Fundraise You may think there is little, or even nothing, you can do to help charities like us who are struggling with the impact that COVID left. So many events had to be cancelled - and as a result so much potential income was lost. We are feeling that pinch even years later. But, actually, you can make a world of difference. At home From Bake Sales to Ladies Days to Hill Climbs. Read More At work Payroll Giving, Give As You Earn, Volunteering & Tins. Read More Donate Fundraising or donating? Here's how to support us: Read More Gift Aid Make your donation worth 25% more, at no extra cost to you! Read More Fundraise: At home Yes, fundraising can be challenging, but it’s also highly rewarding - not to mention, a whole lot of fun. Whilst you are invaluably helping us, you will also be meeting like minded people and, by picking an activity you love, you will enjoy yourself at the same time. From bake sales to bingo nights, marathons to mountain climbing, there is no limit to where your imagination can take you. Of course, it's easier to stay committed when you are enjoying what you do - and passion is infectious so you are more likely to attract others on board to help you and us. You might not realise it, but every time you tell people what you’re up to and why, you’re also acting as an ambassador for us, raising awareness of the charity and the conditions it supports. Whether you want to take part in an event or run one yourself, we would love to hear from you and chat through your ideas so we can work together to achieve our goals. Call 01529 469910 (Mon-Fri 9am-3pm) email hello@inflammatoryneuropathies.uk Text Giving Once your campaign idea is agreed on and up and running, we can set you up with your own Text Giving campaign code, so your supporters can donate quickly and easily using their phone. As well as sharing the code across social media and amongst friends and family, you could even have posters and flyers printed to spread the word around your local community. Online donations We can supply you with a sponsorship form and collection box should you choose but, now, most people prefer to use an online platform to collect donations - it’s so much easier. JustGiving is a popular and easy-to-use online fundraising platform, for which we pay a monthly fee plus a (small) percentage of each donation and Gift Aid. In return, JustGiving manage payments, and even collect Gift Aid on our behalf. You can use the link below to start fundraising with your very own JustGiving page, and once you’re set up, you can share it with friends and family via social media. Don’t forget to add in a few words about what you’re doing and why, and post an occasional update to let everyone know how you’re getting on. Please set the expiry date on your fundraising page to within a couple of weeks of the date your event or campaign ends, as we only get notified that we need to contact our fundraisers with the total raised once a page is closed. Visit JustGiving and start fundraising Did you know that you can raise 65% more by telling your story on JustGiving, 17% more by sharing a fundraising goal, 23% more through pictures, and 8% more just by updating? Learn more here You can also raise funds: In memory of a loved one By leaving a gift in your will By playing our lottery or by signing up to the 200 Club Fundraise: At work Do you own a company or business and would like to get involved with a charity? Are you an employee and want to suggest some ideas of charitable work to upper management? Then read on! Payroll Giving Payroll Giving (also known as Give As You Earn) is one of the quickest, easiest and most flexible ways of donating to our charity. The scheme enables employees to make a donation straight from their gross salary tax-free. This means if an employee who pays standard rate tax donates £1 each month, the cost to them is only 78p on the basic tax rate or 60p on the higher tax rate. Payroll or HR departments will be able to provide details if they are running this scheme. There are many benefits: Not only is Payroll Giving a clear benefit for employees, there are many benefits to be found as an employer too. ● A Payroll Giving scheme is very easy to set up. ● Will fit in with your Corporate Social Responsibility policy. ● Can help to increase staff motivation and morale. ● Can boost your image as an employer. Matched giving Many companies will help charities through a matched giving scheme. Some will match pound for pound, and others will even double match donations made to registered charities by its employees. If you are making a gift to Inflammatory Neuropathies UK, please check with your Payroll or HR department whether your company operates a scheme like this as it could make your donation worth even more to us. Gifts in Kind If your company would like to support our work , but is unable to contribute financially, there are plenty of other ways to help. For example, we are always looking for raffle prizes for our events, so if you feel your company could help in this way, we would love to hear from you. We are also keen to extend our volunteering services and there may be ways in which your company can help us with this. Talk to us about this by contacting hello@inflammatoryneuropathies.uk or give us a call on 01529 469912 Collection Boxes Did you know that, as a country, we have £345 million in loose change in our homes, down the back of our sofas and in our cars? Why don’t we put that useless change into good use? Static collecting boxes are amongst the most effective and efficient forms of fundraising and also raise awareness (we can now claim Gift Aid on the contents of all collection boxes up to £5000). Can your business find a home for one of our collecting boxes? If so, please get in touch with hello@inflammatoryneuropathies.uk . How to donate Have you completed your fundraising and are ready to donate the funds? Or perhaps you’re simply looking to make a donation to support our work? Thank you! Your support means everything to us. Your generosity helps us fund vital research, provide emotional support counselling, and support our local groups doing important work in communities across the country. You can support us via: Enthuse Our trusted third party partner at https://inflammatoryneuropathies.enthuse.com/cp/4fcea/fundraiser#!/ Directly via our bank CAF Bank Inflammatory Neuropathies UK Sort code - 405240 Account no. - 00024633 Paying in by post Please make cheques payable to Inflammatory Neuropathies UK and send to: Inflammatory Neuropathies UK 3 Mill House Carre Street Sleaford Lincolnshire NG34 7TW Making an electronic bank transfer JustGiving or similar If you have created your own fundraising page through JustGiving or another online fundraising platform and linked it to Inflammatory Neuropathies UK, donations are automatically forwarded to us. Gift Aid The Government operates a scheme called Gift Aid that allows charities to claim 25p on every pound donated. So if you donated £100 to Inflammatory Neuropathies UK, it means that you’ll actually be giving us £125 at no extra cost to you. You can make your income go even further! Whether you’re hosting an online fundraiser via JustGiving or Enthuse, or you’re using a paper sponsorship form, consider asking your supporters to “tick the box” for Gift Aid. Gift Aid is a UK government scheme that allows charities like us to claim an extra 25p on every £1 donated by UK taxpayers, at no extra cost to you. So if someone donated £100 to you, we could get £125 for our work. That bonus £25 could allow us to fund an additional Peer Support session, or put it towards the cost of an online Get Together. If you're fundraising for an event and have a JustGiving or Enthuse page, then don't worry, those platforms will automatically ask your donors to “Gift Aid It” by presenting them with a check box. If you're using one of our paper sponsor forms, there will be an option to "tick the box", please encourage your donors to tick it - making sure they read the small print first! If you're making a one off or regular donation, please consider Gift Aiding the donation. Again, platforms like Enthuse will automatically ask you - but if you're making a donation via bank transfer, or cheque for example, we may send out a reminder periodically asking if you'd like to Gift Aid past donations. You can also print off, fill, and mail in a paper copy of our Gift Aid form. You can also complete the short form below. Please note - you cannot Gift Aid payments where you receive something in return such as tickets, raffles, entry fees, bake sale goods - these are considered a purchase rather than a donation.

Privacy Policy Privacy Notice (Plain-English) For Website & Service Users Inflammatory Neuropathies UK – Privacy Notice Last updated: 12th August 2025 Who we are We’re Inflammatory Neuropathies UK , the only UK charity dedicated to supporting people impacted by Guillain-Barré Syndrome (GBS), CIDP, MMN , and other Inflammatory Neuropathies . We provide information, support, grants, local groups, online forums, fund research, and advocate and campaign on behalf of the Inflammatory Neuropathies community. Your privacy matters to us We promise to respect your personal information, keep it safe, and not share it with anyone unless it’s necessary and lawful. The personal information we collect Depending on how you interact with us, we may collect: Your contact details (name, address, phone, email) Information about your condition or experience (only if you choose to share this) Records of your donations or fundraising Messages you send to us Details you post in our forums or groups Information for grant applications Your communication preferences Some of this may be sensitive health information, which we only collect with your clear consent. How we use your information We use your information to: Provide support services Run local groups and online forums Send updates you’ve asked for Administer grants and donations (including Gift Aid) Carry out research (with your permission) Improve our services Our legal reasons for using your data We only process your data if: You have given us permission We need to provide a service you’ve asked for We have a legal duty (e.g., Gift Aid records) It’s in our legitimate interest as a charity, and your rights aren’t harmed Keeping your data safe We keep your data secure using encryption, passwords, and restricted access. We train our volunteers and staff to handle your information carefully. How long we keep it We only keep your data for as long as needed for the purpose it was collected and to meet legal requirements. For example, Gift Aid records are kept for 6 years. Your rights You have the right to: See the information we hold about you Ask us to correct it Ask us to delete it Change your contact preferences Withdraw consent (if we’re processing based on consent) Email us at hello@inflammatoryneuropathies.uk if you want to make a request. If you have a concern You can contact our Data Protection Officer at rich@inflammatoryneuropathies.uk or 01529 469910. You can also complain to the Information Commissioner’s Office (ICO) at www.ico.org.uk.

Inflammatory Neuropathies UK fundraising challenge for 2026. Raisng funds for Guillain-Barre Syndrome, GBS, CIDP, and MMN GBS and CIDP Awareness Month Every May, we come together to shine a light on Guillain-Barré syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). These are rare, life-changing conditions that too many people still haven’t heard of until they impact them or someone they love. Awareness Month is about changing that. It’s about making these conditions visible. It’s about helping people get diagnosed faster. And it’s about making sure no one faces Inflammatory Neuropathies alone. Get INvolved This year, we’re inviting you to be part of two simple, but powerful campaigns: IN the Water Take to the water, whether that’s a swim, paddle, dip, or even just getting your feet wet. It’s a moment to reflect, raise awareness, and stand in solidarity with everyone impacted by GBS and CIDP. You can even raise some money for us at the same time. You can find more by clicking on the button below. CLICK HERE TO LEARN MORE Share & Shout Use your voice. Share your story. Start a conversation. Post on social media, talk to your workplace, or simply tell a friend about your condition. The more people who understand these conditions, the more change we can create. If you want to help raise vital funds for us during GBS and CIDP Awareness Month 2026, then we have a dedicated JustGiving page where you can donate, or where you can set up your own fundraising page by clicking here You can also donate via a text message. Just text AWARE to 70460 to donate£10. Texts will cost the donation amount plus one standard network rate message . Be part of something bigger Awareness Month is driven by people like you, our wonderful community of people, families, clinicians, and supporters. However you choose to get involved, you’re helping to build understanding, support, and hope. If you’d like to take part, fundraise, or run your own activity, we’d love to hear from you. 📧 Email us: hello@inflammatoryneuropathies.uk 🌐 Visit: www.inflammatoryneuropathies.uk 📱 Follow and tag us on social media to join the conversation @InflamNeuroUK What’s on We are running a series of events, activities, and opportunities to connect throughout the month. Get Togethers MMN Online Get Together – Tuesday 12th May at 7pm GBS Online Get Together – Thursday 21st May at 2pm CIDP Online Get Together – Thursday 28th May at 2pm Essex Get Together – Saturday 30th May at 11am CLICK HERE TO FIND OUT MORE IN Conversation Facebook Session – Friday 15th May at 12pm CLICK HERE TO FIND THE GROUP Webinars Benefits and Welfare – Tuesday 19th May at 12.30pm CLICK HERE TO REGISTER Advoca App (Onboarding and how to use it) – Wednesday 27th May at 2pm CLICK HERE TO REGISTER

Medically sourced information on Guillain-Barré Syndrome (GBS) Guillain-Barré Syndrome (GBS) Welcome to our Guillain-Barré Syndrome Information Hub Please note: work on this page is IN progress to make it more accessible and readable. To view the static GBS page, visit here. If you've found yourself on this page due to a recent diagnosis of GBS either in yourself, or someone important to you - welcome. We know this is a scary and confusing time. You may never have heard of the condition, and the speed of it has left you reeling. We hope this page brings a little clarity to the situation, and helps explain what is happening with GBS, its cause, how it's diagnosed, treated, and the future. Our information is sourced from our Medical Advisory Board, medical texts, and recognised support providers. Where possible, we've taken steps to make this page as accessible to everyone as possible, giving simple explanations or writing in plain language. If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will do our best to respond or point you to the right place or person. Here are some helpful links that may be useful now, or throughout your experience. Our Peer Support service can link you up with someone with lived experience Our Personal Grants can help with home adaptations or with travel costs If you feel you need support with the emotional impact of this, we have a specialist rare condition support service available. Lived stories from people who have been in a similar position What is Guillain-Barré Syndrome (GBS) and the variants? Read More GBS | Causes Read More GBS | Symptoms Read More GBS | Diagnosis Read More GBS | Treatment Read More GBS | Mechanical Ventilation Read More GBS | ICU Read More GBS | Mental Health, Well Being, and Work following GBS Read More GBS | What's Next? Read More GBS | Residuals Read More GBS | Carers Read More GBS in Children Read More GBS | Vaccinations Read More GBS | Other Acute Inflammatory Neuropathies Read More Anchor 1 What is Guillain-Barré Syndrome (GBS) The basics (bold text in this section has an IN simple terms explainer below) Guillain-Barré (pronounced ghee-yan bar-ray) Syndrome, or GBS for short, is a rare and serious neurological condition known as an Inflammatory Neuropathy that damages the Peripheral Nerves . In GBS, the body's immune system goes into overdrive and produces Antibodies that attack the Peripheral Nerves. The immune attack triggers inflammation around the nerves and damages the protective Myelin coating that helps electrical signals travel smoothly along the Axons. The result of this damage causes messages between the brain and muscles to become slowed, disrupted, or halted in some cases altogether. This causes weakness, tingling, pain, and possible paralysis which can develop rapidly (often within 48 hours from onset) but should improve over time as the inflammation settles via urgent treatment. Most recover, however some sadly do not. Many are left with long-term or lifelong residual effects, which may include ongoing weakness, loss of sensation, chronic pain, and significant impacts on mental and emotional well-being. IN simple terms: Inflammatory Neuropathy Neuro means string, or nerve. Pathy , in the medical world, refers to a disorder or system of medicine. So Neuropathy simply means a condition impacting the nerves. Inflammation is part of the biological defence response of body tissues. The five signs of inflammation are heat, pain, redness, swelling, and loss of function. Therefore, an Inflammatory Neuropathy is when the nerves are damaged or impacted through inflammation. IN simple terms: Peripheral Nerves Your brain and spine are called the Central Nervous System (CNS). T he Peripheral Nervous System (PNS) is the network of nerves carrying messages to and from the CNS to your limbs, organs, and the rest of your body. The PNS consists of sensory, motor, and autonomic nerves, transmitting sensations, controlling muscle movement, and regulating involuntary functions like heart rate and digestion. IN simple terms: Antibodies An antibody is a large protein which is used by the immune system to identify and neutralise antigens (toxins, bacteria, viruses). IN simple terms: Myelin & Axons The Myelin is an insulating layer, or sheath, that surrounds nerve fibres, think of it as the plastic protective casing that surrounds an electrical wire. The electrical wire in this case is an Axon , or simply, the Nerve Fibre's. The wire transports signals between your central nervous system and peripheral nervous system. Demyelination is the name for damage to the Myelin. How many people get GBS? It affects one to two people per 100,000 per year (around 1,300 people each year in the United Kingdom). Who is most likely to develop symptoms? People of all ages can develop GBS, but it is more common in adults, and in men than in women. Is GBS infectious? It is neither hereditary nor infectious, so you can’t pass it on to your children, or transmit it to someone else. It tends to be caused by an infection or illness like food poisoning. See the Causes of GBS section for more. Will I recover from GBS? Is it fatal? Most people will eventually make a good recovery, but it can be life-threatening. Some people will make a complete recovery with full bodily function. Some people are left with long-term problems, from severe fatigue to dexterity and mobility issues. About 2-5% of people with GBS die. Quick diagnosis and rapid access to treatment like IVIg (see GBS treatment section), makes the likelihood of recovery much higher. Will GBS come back? GBS is a one-off condition which usually does not happen again, except in around 3% who may experience GBS more than once, perhaps many years later. The fear of recurrence is very natural, and is felt by many in our community. You're not alone in any worries you feel about GBS returning, but please remember it is a very rare event. How long will recovery from GBS take? GBS worsens for up to four weeks. Unfortunately, recovery usually takes much longer than this. The speed of recovery depends on the type and severity of damage. Demyelination , inflammation and antibodies usually improve within week. If there is damage (degeneration) of the axons , recovery takes many months or up to three years, and is often incomplete. If the muscles have become very thin (wasted) this usually indicates axonal damage and a slower recovery. Axonal degeneration may occur in either AIDP or axonal GBS (see section below on types of GBS ). The distinction between AIDP and axonal GBS does not affect treatment or the speed of recovery. The factors which usually indicate a slower recovery are: more severe weakness older age diarrhoea just before GBS starts In some cases, an initial diagnosis of GBS may later be changed to CIDP, a chronic variant in which nerve inflammation lasts for years. ‘Chronic’ means continuing for a long time. CIDP stands for Chronic Inflammatory Demyelinating Polyradiculoneuropathy. By definition, in CIDP the symptoms continue to worsen more than 8 weeks after onset, usually after improving first. If someone with severe GBS is not improving, this is more likely GBS with axonal damage than CIDP. Is There More Than One Type of GBS? Yes. The word ‘syndrome’ in GBS means it is not a single disease but includes several different diseases which may look similar. AIDP The most common type of GBS is acute inflammatory demyelinating polyneuropathy or AIDP. ‘Acute’ means starting quickly, ‘Inflammatory’ means a reaction of the immune system, for example when your skin is inflamed it looks red and feels uncomfortable. ‘Demyelinating’ means damage to the myelin. ‘Polyneuropathy’ means a disease affecting the nerves. The myelin sheath is made and repaired by cells called Schwann cells. People with AIDP typically have numbness/tingling as well as weakness. In more severe forms of AIDP, both the axon and the myelin may be damaged, giving slower recovery. AMAN and AMSAN The axon is the conducting core of the nerve, equivalent to the copper wire within electrical cables. In AIDP this is usually not damaged. However, in the variants called AMAN (acute motor axonal neuropathy) and AMSAN (acute motor and sensory axonal neuropathy), the axon is damaged too. Recently, variants of axonal GBS have been discovered in which the axon is temporarily blocked by antibodies without much damage, which can therefore recover more quickly. These may be called paranodopathy, acute motor conduction block neuropathy, or reversible conduction failure. Although the commonest (classical) form of GBS causes weakness and sensory loss throughout the whole body, some people with GBS may have one of several variants which look different. Pattern of Symptoms in Variants of GBS These variants include: weakness without sensory loss (pure motor variant, usually AMAN) weakness only in face and cranial nerves (facial palsy with paraesthesias) weak face, tingling in the arms/legs but no weakness in the arm/legs weakness only in arms, neck and throat (pharyngeal–cervical–brachial variant) weakness only in legs (paraparetic variant) Miller Fisher syndrome (MFS) GBS variants are rarely ‘pure’ but often overlap in part with classical GBS. Antibodies to molecules called gangliosides are found in many of these variants, but not usually in classical AIDP. Miller Fisher Syndrome and Variants Miller Fisher syndrome (MFS) is also known as Fisher’s syndrome. MFS typically causes: abnormal coordination (‘ataxia’, such as clumsiness and poor balance as if drunk). paralysis of eye movements (‘ophthalmoplegia’, which may cause difficulty reading or double vision). absent tendon reflexes (‘areflexia’, detectable by a doctor but causes no symptoms). Often there is weakness of the face but many people have no weakness. Variants of Miller Fisher syndrome Some people with MFS also have weakness of the whole body and are then considered to have an overlap of both MFS and GBS. The speed of recovery is largely determined by the severity of the GBS. If GBS causes weakness of eye movements (which it usually doesn’t) this is also an overlap with MFS. Rare milder variants of MFS may have weakness only of eye movements (‘acute ophthalmoparesis’). Bickerstaff’s brainstem encephalitis (BBE) means MFS with additional inflammation of the brainstem. This typically causes drowsiness or reduced consciousness, often with whole-body weakness, and may be shown on MRI scanning or by neurological examination. BBE is the only variant of GBS affecting the brain; otherwise GBS and MFS affect only the peripheral nerves not the brain. Antibodies to ganglioside GQ1b (IgG type) are found in most patients with MFS and its variants (but not other types of GBS), suggesting they are all closely related. What causes Guillain-Barré Syndrome (GBS) Guillain-Barré syndrome is thought to be caused by an over-reaction of the immune system, the body’s natural defence against illness and infection. Normally the immune system attacks any germs that get into the body. A disease in which the immune system attacks its own body is called an autoimmune disease . In people who develop Guillain-Barré syndrome, the immune system experiences a sort of allergic reaction to the infection and it mistakenly attacks the peripheral nerves. The immune reaction in GBS causes the myelin to become inflamed and may also damage the axons . This prevents signals from the brain travelling along the nerve fibres properly, which can cause numbness, weakness and pain in the limbs. Because many nerves are inflamed, GBS is called a ‘polyneuropathy’. Poly means "many" IN simple terms: Myelin & Axons "wait, myelin... axons..?" Don't worry - that's why we are here. The Myelin is an insulating layer, or sheath, that surrounds nerve fibres, think of it as the plastic protective casing that surrounds an electrical wire. The electrical wire in this case is an Axon , or simply, the Nerve Fibre's. The wire transports signals between your central nervous system and peripheral nervous system. Demyelination is the name for damage to the Myelin. Now it is all a little more complicated than that, but this just gives you a quick way to visualise it. GBS is not contagious. You cannot catch it from someone else, you cannot spread it to someone else. So in that case, how does someone develop it? About two thirds of people who develop GBS had an infection within the preceding six weeks. Usually this is a fever, chest infection, or flu-like illness without detecting a specific infecting organism. If a specific infection is found, the most common is Campylobacter bacteria. Campylobacter is the main cause of food poisoning in the UK, and is typically caught from eating raw or under-cooked chicken. Other specific infections that are proven sometimes to trigger GBS include: Influenza Haemophilus influenzae Mycoplasma pneumoniae Hepatitis A Hepatitis E Cytomegalovirus (CMV) Glandular fever (Epstein-Barr virus) Zika Most of these just cause mild flu-like symptoms or a chest infection. Most people who catch these infections don’t develop GBS. GBS only happens rarely if the infection triggers a sort of allergic reaction of the immune system against a person’s nerves. After Campylobacter infection the risk of developing GBS is under 1 in 1,000. GBS is sometimes triggered by major surgery including transplant surgery. Rarely GBS is triggered by certain biological drugs used for treating cancer or other diseases. GBS can also, very rarely, be triggered via certain vaccinations like influenza, at an estimated rate of 1-3 cases per million vaccinations. In some cases, no obvious trigger is apparent. Remember, it is not contagious. In the rare event of a mass incidence such as that as we saw in Pune in 2025, it is usually caused by a water or food supply contaminated with a bacteria like Campylobacter. What are the symptoms of Guillain-Barré Syndrome (GBS) Early Symptoms Symptoms of Guillain-Barré syndrome usually develop rapidly, starting in the feet and legs before spreading to other parts of the body. These symptoms affect both sides of the body at the same time, usually symmetrically. You may experience some or all of these symptoms: numbness pins and needles muscle weakness poor co-ordination problems with balance pain in back and legs Later symptoms The symptoms may continue to get worse over the next few days or weeks, typically reaching the worst point, or nadir, within two weeks and always within four weeks. In the early stages, GBS is often misdiagnosed - we have heard everything from Stress and Anxiety through to a Stroke or MND. If you're experiencing some or all the symptoms above or below, please mention GBS to your health care team. Some people are only mildly affected, but others may have: difficulty walking paralysis difficulty breathing severe pain weak arms problems speaking or swallowing bowel problems or constipation facial weakness and loss of expression The worst degree of weakness is usually reached within two to four weeks. Some people worsen very rapidly to severe paralysis within a few days, but this is uncommon. The person then stays the same (plateau or stabilisation) for a few days or weeks. Many people are so weak that they are unable to get out of bed. However, it is very important that someone keeps all the joints moving to stop them stiffening up* . A physiotherapist may advise relatives and friends on what they can do to help. Community Advice: if it doesn't cause pain, gently massage and manipulate fingers, and toes, wrists and ankles. Rub a rough towel gently across the skin to stimulate the nerves. If the person you're with is paralysed, check via spoken agreement, or blinking, that this is not causing pain due to skin or muscle sensitivity. Other Symptoms You may also experience Cardiac Arrythmia (irregular heartbeat), very high or low blood pressure and constipation may occur if there is inflammation of the autonomic nerve, supplying internal organs. How is Gullain-Barré Syndrome (GBS) Diagnosed GBS can be difficult to diagnose because several other conditions can cause similar symptoms. Your GP will refer you to hospital if they think you might have it or they are not sure what is causing your symptoms. Examination: A GP or specialist may: ask about your symptoms, such as when they started and whether they’re getting worse. examine your hands, feet or limbs to check for weakness or numbness. ask if you’ve recently been ill, as GBS may follow an infection. ask about risk factors or symptoms of other conditions such as toxins, alcohol, tick bites, diabetes, family history, etc. check your reflexes, such as whether your leg twitches when your knee is tapped, as people with GBS usually have absent or reduced reflexes. Nerve Test (EMG, neurophysiology): To measure how your nerves are working, a specialist clinical neurophysiologist usually does these two tests at the same time: nerve conduction studies (NCS): in which mild electric shocks are given through the skin to activate the nerves and measure the signals travelling along your arms and legs. electromyogram (EMG): in which tiny needles are inserted into several muscles to record their electrical activity. This can show if there is damage to the axons. In people with GBS, these tests will usually show that signals are not travelling along the nerves properly. Lumbar Puncture A lumbar puncture is a procedure to remove some fluid from around the spinal cord (the nerves running up the spine), known as cerebro-spinal fluid (CSF). It involves lying on one side and having a needle inserted into the base of the spine under local anaesthetic. The CSF usually has a raised protein level in GBS. The CSF may also show signs of other conditions with similar symptoms to GBS, such as an infection. Occasionally the diagnosis may not be clear even after the tests, or it may take time to arrange the tests. The diagnosis usually becomes more obvious with time. Treatment for GBS GBS is classed as a medical emergency, and you should be admitted to hospital. Once GBS is identified, it's important that treatment is started as soon as possible. Faster treatment tends to lead to a faster recovery and less residuals in many patients. Most people will remain there for a few weeks, to a few months. In some rare cases, this can be shorter or, unfortunately, longer. The main objective is to stop the immune reaction/attack and reduce the inflammation. Please note, if you have the variant known as pure Miller Fisher syndrome (MFS), you may be more mildly impacted and can, in many cases, recover without treatment. You should be closely monitored during this process, and those with the subgroup, GBS-MFS overlap may need treatment if weakness develops. Those with BBE may also experience this. IVIg The most commonly used treatment for Guillain-Barré syndrome is intravenous immunoglobulin (IVIg). Immunoglobulin is made from donated blood that contains healthy antibodies which can help stop the harmful antibodies damaging your nerves. IVIg is given intravenously, which means directly into a vein, usually over a period of five days, and is most effective if given in the first two weeks following onset. IVIg is not a 'cure' for GBS, but is given to stop the attack on your nerves. The sooner it is administered, the less long term damage/impact you should experience. Once the immune reaction has stopped, then the process of recovery can begin. Plasma Exchange Plasma exchange, also called plasmapheresis, is sometimes used instead of IVIg. This involves being attached to a machine that removes blood from a vein and filters out the harmful antibodies that are attacking your nerves before returning the blood to your body. This is also usually delivered over a period of five days, and is considered most effective during the first four weeks following onset. Both IVIg and plasma exchange are considered to be equally effective and on average lead to earlier recovery than if left untreated. Unfortunately these treatments do not work for everyone. There are currently no other treatments with proven efficacy for GBS. I'm pregnant, can I be treated? Either IVIg or plasma exchange may be given during pregnancy if required. IVIg may be preferred. It can be scary being treated with powerful medications while pregnant. It may help to know that our Chair of the Board of Trustees experienced something similar - GBS while pregnant with her son. She shared her story in this podcast episode: Other treatments during GBS While in hospital, you’ll be closely monitored to check for any problems with your lungs, heart or other body functions. You may also be given treatment to relieve your symptoms and reduce the risk of further problems. These treatments may include: A ventilator if you’re having difficulty breathing. We'll cover that in more detail in a future section. A feeding tube through your nose if you have swallowing problems. Painkillers if you’re in pain. Being gently moved around on a regular basis to avoid bed sores and keep your joints healthy. A thin tube called a catheter in your urethra (the tube that carries urine out of the body) if you have difficulty peeing. Laxatives if you have constipation. Injections to prevent blood clots. Physiotherapy to help you learn to move again and build up your strength. Remember, GBS is not one size fits all. You may be given some, or none, of these treatments. If you're worried about anything that is happening, please ask your doctor or nurse to walk you through the process. Mechanical Ventilation and Guillain-Barré Syndrome (GBS) Mechanical Ventilation and Tracheostomy Around 20% of people with GBS develop weakness of the breathing muscles and need Mechanical Ventilation. Your care team will walk you through every step of this process. The type of Mechanical Ventilation in GBS cases is typically known as Invasive. This means the tools used penetrate the body as opposed to Non-Invasive like Bag Masks that sit on the face/mouth/nose. However, in some cases your care team may find Non-Invasive is suitable for you. An Orotracheal Intubation (OTI) may be used in the short term. This is when a tube is passed through the mouth and into the trachea (the tube that carries air to and from your lungs). This can be uncomfortable, however medication/sedation can be given to lessen the sensation. If you or your loved one is expected to be on Mechanical Ventilation for a long time, then a Tracheostomy may be performed. A Tracheostomy is when an opening in the neck is surgically created to allow for the tubes to be directly inserted into the trachea. This has the benefit of vastly improving comfort for the patient opposed to oral intubation, it requires less sedation, allows for easier clearing of secretions, may allow for the patient to speak/verbalise, and helps patients breathe independently faster. It can be frightening being put on Mechanical Ventilation, and in some cases uncomfortable though your team will do their best to minimise discomfort. It can also be upsetting seeing someone you care about hooked up to wires and cables, breathing for them. Although difficult, please try to keep in mind that this is the best way to get the body breathing independently again. If you have questions about how Mechanical Ventilation feels, and the experience. We can link you with someone who has gone through it via our Peer Support service. Get in touch and we'll get you in touch as quickly as possible: Peer Support Zoe received a tracheostomy during her experience, and is now getting back to playing rugby: GBS and ICU Intensive Care Intensive care is a unit within hospitals, staffed by medical support personnel who are specially trained in the high levels of care required. This is also known as ITU (Intensive Therapy Unit). Patients are constantly monitored, day and night, and everything is done to ensure that they receive the highest level of care possible. Admission to ICU is particularly recommended for patients who are experiencing problems with their breathing, swallowing or coughing muscles. Around 20% of GBS patients are admitted to ICU. The amount of equipment may seem a bit daunting at first, but you will soon become familiar with all the machinery. It can help to know how each item helps recovery, here's a small list of what you may see. If in doubt, simply ask a doctor or nurse to explain what something does. Equipment that may be used on an ICU includes: Ventilator A machine that helps with breathing by pumping air in and out while they are temporarily unable to breath unaided. Breathing tube Placed in the mouth, nose, or through a small cut in the throat (tracheostomy) which makes it more comfortable if ventilation is likely to be needed for longer than a week. This cut will heal up when the person can breathe again for themselves. The inflatable cuff around the bottom of this tube stops fluid and secretions from slipping down the throat into the lung and causing infection. Monitoring equipment Used to measure important bodily functions, such as heart rate (ECG), blood pressure and the level of oxygen in the blood. IV lines and pumps Tubes inserted into a vein (intravenously, iv) to provide fluids, nutrition and medication Feeding tube Placed through the nose down into the stomach (nasogastric tube, NGT) or sometimes through a small cut made in the tummy (gastrostomy, PEG) if a person is unable to eat normally Catheter A tube to drain urine from the bladder Drain Tube used to remove any build-up of blood or fluid from the body Family and Loved Ones This next section is useful for family, partners, and loved ones. Your job is to offer love, comfort and reassurance during this difficult period. Try to remain calm and positive and give lots of encouragement on progress. Keep yourself well informed by the medical staff. Writing a few lines each day in a journal will help you keep a perspective on progress. You can share this over the coming weeks to show how far they’ve come since those early days. For close family, this period of the illness can be an exhausting time of stress, uncertainty and disruption, as you struggle to maintain other commitments alongside frequent hospital visits, so don’t forget to look after yourself and stay well. Remember to eat and drink regularly. When days revolve around hospital visits, it’s easy to put yourself last, but your wellbeing matters too. Taking a moment to nourish yourself helps you stay strong for the long haul. Intensive Care | What to Expect? Intensive Care Comfort The little things you can do will mean a lot. Do they need a hair wash or a shave? Do nails need manicuring? Can you help by massaging their hands or feet? Eating and drinking while you’re visiting might have a negative impact. Picture it from their point of view, they're on a ventilator or being fed through a tube, and you're enjoying their favourite drink. Try to eat and drink before you go in, or stash a bottle of juice in your bag to have the hall to stay hydrated! If the patient feels ill, strong smells may not help. This includes food (above), or strong perfumes/aftershaves/body sprays. Try to wear something neutral if you can. Some patients have pain in the acute stage, others as recovery kicks in, and some have no pain at all. Try to understand what pain they have, if any, and the frequency and type of medication being given to alleviate it. GBS patients tire easily, may be on sedative drugs and may nap quite frequently. They might not want visitors over and above one or two close family members, especially in the early stages following diagnosis and the start of recovery. At the end of your visit, make sure you leave them in the best possible frame of mind. Turn off any device that might cause irritation or disturbance and make sure they have what they need or can attract attention if required. Communication Communication with Staff Understand as much as you can about this condition. If you are the person visiting most frequently, introduce yourself to the doctor in charge of the case and don’t be afraid to ask questions. Some doctors are better than others at explaining things, so let them know if you don’t understand. Get to know the regular nursing staff and ask for a daily update on progress. Physiotherapy can start while the patient is still paralysed. Get to know the physio and keep yourself updated on procedure and progress. They can tell you how you can help with exercises between physio sessions. The more knowledge you have about the condition, the more you can support, and the less anxious you will hopefully feel. Communication with Patient Talk to the speech therapist about communication aids. If facial muscles aren’t paralysed, then lip reading could help. Some people retain finger movement and can write letters in the air or on the palm of the hand. A common method of communication with a patient whose movements are restricted to the eyes and eyelids, is to use a question and answer technique with the patient answering with one blink for ‘yes’ and two for ‘no’. Pointing to the letters on an alphabet board and asking ‘Is it on this line? Is this the letter?’, will help. If the patient is strong enough, they may be able to point at an alphabet board with a finger or pointer attached to a headband. A hospital communication book contains lots of words and images useful in a hospital setting and can pre-empt many questions or comments a ventilated patient is likely to make. Inflammatory Neuropathies UK will send you a free copy on request, that you can leave at the bedside for staff and visitors to use. Another useful tool is an app developed by David Muir, who was ventilated due to muscular dystrophy and became non-verbal as a result. The app is called Passy Muir Trachtools and is free to download in your app store for Apple and android devices. If it is not available on your device, similar apps exist on Android and iPhone such as Look to Speak which relies on eye-movements. The charity, Scope, has some excellent app recommendations for communicating, though may require the use of hands. Some of these are locked behind pricey paywalls, but we found this free option to be excellent: https://theopenvoicefactory.org/ When you find a communication method that works, make sure you share this with staff and other visitors so they can adopt the same practice. Financial Worries Financial concerns may be a cause of extra anxiety, especially if the patient is the main wage-earner. Get in touch with the Social Worker at the hospital who will advise on benefits. Alternatively, Citizens’ Advice offers free expert advice which you access online, or by phoning your local office. Stay in regular contact with employers and make sure you understand the absence and returning to work processes. We discuss returning to work (phased returns, adjustments etc) later in the Info Hub. Inflammatory Neuropathies UK may be able to help through our Personal Grants Scheme with travel costs for frequent journeys visiting a family member in hospital, and for home adaptations should they be necessary. Hallucinations Hallucinations, unusually vivid daydreams or nightmares are not uncommon for GBS patients when very weak. They may be worsened by sedative or painkilling drugs but can also arise in patients without any drug effects. They are not necessarily frightening, but hallucinations can seem very real, and they may be convinced that these are actual events. Talk to them calmly, using their name, and ask them what is happening, and whether they feel afraid or confused. Explain that they are having a hallucination and that you don’t see or hear what they do, but acknowledge their feelings. Tell them you are there, and everything is ok. Gentle patting may help bring them back, and you could try to turn their attention to something they enjoy, by talking about favourite music or a TV programme they like to watch. Locked-In and Feeling Vulnerable Many GBS patients are alert and acutely aware of what is going on. They feel vulnerable, isolated, and locked-up inside their own body. They are likely to feel anxious and frustrated and may exhibit irrational or uncharacteristic behaviour. It will be difficult to come to terms with what has happened, so do not be surprised if they are tearful, bad tempered or panicky. Mentally and emotionally, loss of movement and inability to speak makes a person feel fragile and vulnerable, so be sympathetic and caring whenever you are with them. We have a Peer Support service you may wish to utilise, or look through the stories section on our website. Use these resources to reassure them that this is temporary, and though scary, will pass. Mental Stimulation Hospital stays can be boring, particularly for those with complex needs who may be isolated in a private, or lower capacity room. They may feel socially isolated and frustrated, particularly if they're not able to pick up a book, their phone, or change the channel on the TV. When visiting a loved one, keep them informed. Tell them what day it is as it can be easy to lose track of time which can add to confusion. Talk to them about what's happening in the outside world, and what's in the news (try to keep it light where possible!). Friends and family Encourage friends and family to send cards, texts, and emails with what they're up to. Sit and read them aloud. Check in with the person impacted by GBS about other visitors. Some people are perfectly happy receiving any and all visitors, while others might feel vulnerable or even embarrassed to be seen while unwell. Don't talk over them - include them. Even if they can't respond verbally, include them in the conversation. Try not to start or continue outside conversations that they are not caught up on or involved with. Make use of tech Download films, favourite TV shows, podcasts, audiobooks, and music onto their device or your own and watch or listen together if you can. Old favourite shows, YouTube documentaries, or game streaming on Twitch, can be quite popular as there's less need to follow a plot, and instead they can zone in and out as the mood strikes. Ask the doctors and nurses about leaving tablets, laptops, or phones with media running. Remember though - ask every so often if they want media left running. They may wish everything turned off and to be left in peace. Remember to charge! When visiting, try to remember to plug in their devices, including headphones where applicable, to power them up. Pain Pain is unfortunately common in GBS and may be experienced to a greater or lesser degree at various sites around the body. Medication can and will be provided by the staff in the hospital. As above, pain levels must always be considered when moving the patient and care taken to ensure that all movements are gentle. Pain can and will vary from day-to-day, so hospital staff will monitor and assess needs. Between those times, if you're visiting someone, ask a clear question about pain levels that can be answered with a yes or no signal. Be it verbal, or if they're paralysed/ventilated - with a blink, eye movement, finger movement, or whatever mechanic of movement they have available. Paralysis, movement, and early physio GBS is a paralysing condition. The paralysis is temporary but may be extensive, which can be frightening and hard for the patient to accept. Because of the lack of movement, there may be muscle wasting, possibly leading to weight loss. Gentle physiotherapy, even at the early stages, will help to minimise stiffness of joints and muscles. The nurses will regularly turn the patient to prevent bed sores. Our community has found - as long as it is not painful to the recipient - that gently massaging and manipulating the fingers, toes, wrists, and ankles can be beneficial to recovery. Similarly, stroking hands and feet with a rough towel can stimulate nerves - but should only be done if it does not cause pain. Senses | What are they like? They may have reduced or absent sense of taste and smell, and some patients experience visual disturbance. Hearing is unlikely to be affected, and GBS does not affect the brain, so the patient is usually aware of what is going on around them. However, this may be dampened by sedative or painkilling drugs which are often used to make GBS patients more comfortable. They may find bright lights annoying/painful so you may like to dim the lights, or have a set of sunglasses by the bed. Some patients do experience an increase in skin sensitivity so although contact is important, be aware that rarely even a light touch may cause severe pain which the patient cannot easily communicate to you. If a patient isn't able to verbally communicate, always look to their eyes for visual cues on pain/comfort levels. During the severe phase of the illness, GBS patients can feel very hot or cold and might frequently request a fan to be turned on and off. Some find a damp or cool cloth across their forehead, under their armpits, between their legs also helps - talk to the health care team about this first to ensure no equipment is impacted. Ventilation | how do they feel? Some patients in ICU are fully awake, others are awake but partially sedated with medication to help them relax, and others are kept asleep. If awake, they may be alarmed at the new situation and surroundings, so talk to them calmly and explain what is going on. It may be useful to have a doctor or nurse help explain what is happening. They should not feel sick or nauseas due to the tubes. If they do, a nurse or doctor can give appropriate medications. You may feel upset or scared seeing your loved one affixed to these wires and machines. This is only natural. Please remember this is the fastest, and safest, way to get your loved one breathing independently again. We have a section about Mechanical Breathing you can read as part of this Information Hub. Ventilation | coming off and what's next? As things improve, they will be taken off the ventilator, often starting with just a few minutes and building up gradually. Patients can get quite panicky at the beginning of this procedure as they have become reliant on the ventilator and might not believe that they can breathe again without it. Reassure them that their natural ability to breathe is returning and that this is the start of getting well. Once off the ventilator, it is likely that they will soon be transferred to a general ward for a time before moving into a rehab unit or being discharged home. Moving out of ICU, where patients are monitored continuously, can be stressful in itself, but it’s all part of recovery, and no one will be moved until the medical team is satisfied that they are ready. Mental Health, Well-Being, and Work following GBS This section will provide useful links and sources to help support your mental health after, or during GBS. If you’re a carer or have experienced a loved one going through an illness it can also be a traumatic time, and these links may also help you. We also discuss getting back to work and how to communicate with your employer. Click one of the headers below to access the information directly: Mental Health & Wellbeing Sexual Relationships Getting Back To Work Back To Work: After a Long Absence Back To Work: Making Reasonable Adjustments Back To Work: Phased Return Back To Work: Pay During A Phased Return To Work Click here to return to the main GBS topic hub . Mental Health & Wellbeing With all the changes in your health it is not uncommon to feel anxious or angry. An acute stress reaction is recognised as being a normal part of the process of adjusting to a life change, and it can often help to talk things through with a partner or close friend. However, please seek advice and help from your GP if you are finding it difficult to cope or to sleep, or if you are feeling overwhelmed emotionally. The impact of being severely affected by a sudden, frightening and potentially life-changing condition such as GBS can leave people with symptoms of PTSD (post-traumatic stress disorder). It can develop immediately, or many months or even years after a traumatic event. If you are concerned about low mood, irritability, panic attacks, anxiety, flashbacks, physical sensations such as trembling or sweating, poor concentration or sleeping problems, please talk to your GP about getting some counselling. Sexual Relationships GBS, CIDP and associated inflammatory neuropathies can bring on problems in any relationship, and sexual relationships are not excluded. Dealing with a long-term illness or disability can put a great strain on a relationship, particularly when one partner is partially or totally dependent on the other. Even without the actual physical disability, the emotional upheaval can interfere with a couple’s sex life and this can be difficult to talk about. This can mean that the once close, intimate relationship can become distant and stressful for both partners. Help is available so speak to your GP or a relationship counsellor. Relate https://www.relate.org.uk/ Getting Back To Work When someone is ready to return to work after an absence, the employer should have a procedure they follow, or an Occupational Health service. You can check your workplace’s absence policy for this. Your workplace might have a policy for meeting with employees after absences. Back To Work: After a Long Absence If there’s been a long absence or the employee has an ongoing health condition, it’s a good idea for the employer and employee to meet and: Make sure the employee is ready to return to work. Talk about any work updates that happened while they were off. Look at any recommendations from the employee’s doctor. See if they need any support. If the employee has a disability, see if changes are needed in the workplace to remove or reduce any disadvantages (‘reasonable adjustments’). Consider a referral to a medical service such as occupational health. Discuss an employee assistance programme (EAP) if it’s available. Agree on a plan that suits you both, for example a phased return to work. Back To Work: Making Reasonable Adjustments If an employee has a disability, by law their employer must consider making ‘reasonable adjustments’ if needed to help them return to work. Reasonable adjustments could include making changes to the employee’s: Workstation or working equipment. Working hours. Duties or tasks. For the best course of action, the employer should take advice from: The employee themself. The employee’s doctor. Their Occupational Health adviser. This can help get people back to work quicker prevent any further problems. Back To Work: Phased Return A ‘phased return to work’ is when someone who’s been absent might need to come back to work on: Reduced hours. Lighter duties. Different duties. For example, after a: Long-term illness. Serious injury. Bereavement. The employer or their HR manager and the employee should agree on a plan for how long this will be for. For example, they could agree to review how things are going after a month and then decide to increase the working hours or duties, or they might decide they need to stay reduced for longer. The employer or HR manager should continue to regularly review the employee’s health and wellbeing in the workplace and make new adjustments if necessary. Back To Work: Pay During A Phased Return To Work If the employee returns to their normal duties but on reduced hours, they should get their normal rate of pay for those hours they work. For the time they’re not able to work, they should get sick pay if they’re entitled to it. If the employee is doing lighter duties, it’s up to the employer and employee to agree on a rate of pay. It’s a good idea to make sure this agreement is put in writing. This information is provided by ACAS (the Advisory, Conciliation and Arbitration Service). Further information regarding absence and returning to work is available on the ACAS website: https://www.acas.org.uk/absence-from-work MentalH Sexual Relationships Getting Back to Work After Long Absence Reasonable Adjustments Phased Return Pay Phased Return What happens after GBS? What happens after Guillain-Barré Syndrome (GBS)? What happens next? That’s a big question for a lot of people upon leaving hospital. This section covers everything from rehab to hygiene to pain management. To skip to the information directly, just hit a header below: Support and Rehabilitation Going Home Assessment & Care Plan Residual Symptoms Preventative Measures Hospital Follow Up Physiotherapy and Discharge Hygiene, Cleanliness and Teeth Diet Your Immune System Exercise and Rest Pain Support and Rehabilitation 60-80% of GBS patients can walk independently at 6 months, and the vast majority recover within a year. Of these, some will be discharged straight home without spending time in a rehabilitation unit, but if you need it, support is available to help you recover and adapt to any long-term issues. Specialists who might support you through rehab: Physiotherapist: will help you with movement issues, re-building muscle, and learning to walk Occupational Therapist (OT): will identify potential problem areas and work out some solutions Speech and Language Therapist: will help with communication and swallowing problems Counsellor or Psychologist: someone you can discuss your problems with and help you find ways to cope emotionally Going Home Leaving hospital or a rehabilitation centre and heading home can be daunting and takes a while to arrange. You may need equipment to help with everyday tasks, your home may need adaptations, or you may need a care package in place. There are many people and organisations that can help with this, starting with the occupational therapist and your care team. Your family can also be a great help in getting the information together and speaking to organisations that have in-depth knowledge of what help is available. Assessment & Care Plan If you are likely to have ongoing health and social care needs you should have an assessment carried out by a multidisciplinary team of health or social care professionals such as a social worker, physiotherapist, occupational therapist, psychologist or dietician. You, and a family member if appropriate should be involved in this process. A care plan should include details of: The treatment and support you will get. Who will provide the support. When and how often. Monitoring and review. A named co-ordinator. Who and how to contact. The type of support that might be in a care plan: Community care services. NHS continuing services. NHS funded nursing care. Rehabilitation. Equipment. Support from voluntary agencies. Residual Symptoms It is normal to experience persistent symptoms over the weeks and months after discharge from hospital following GBS. These symptoms vary from patient to patient and include weakness, tingling, aching in the limbs, nerve pain, cramps and extreme tiredness. We have a longer section on Residual Symptoms here . Preventative Measures Nothing can be done to alter the very small risk of a recurrence of GBS. Since GBS can be triggered by an infection, you might think it desirable to avoid all possible exposure to infections. As observed during the COVID-19 lockdown in 2020, this may be possible, but involves sacrificing normal life to a degree that is neither practical nor desirable. Having had GBS does not increase the probability that you will get it again. Hospital Follow Up There is a wide range of different practice regarding hospital follow-up visits. Unless you are taking medicines for other conditions, or unless you are being prescribed medicines for pain or complications, it is unlikely you will need to attend hospital as an outpatient following discharge. The person you are likely to need to see is a community physiotherapist, rather than a neurologist. Some neurologists may ask you back for a follow-up appointment to see how your recovery is going, but most do not, because you no longer have an ongoing neurological condition and their role in your treatment has come to an end. Physiotherapy and Discharge If you have difficulty accessing physiotherapy, but feel it would benefit you, or if you find yourself on a lengthy waiting list, please contact the office at Inflammatory Neuroapthies UK. Hygiene, Cleanliness and Teeth Personal cleanliness for those who cannot care for themselves fully can be a problem. Many returning home from hospital may have reduced use of their hands, usually temporarily, but sometimes permanently. Many will be unable to wash themselves, brush their hair, use the lavatory, wipe their bottoms, brush their teeth, cut their nails etc. It is important for both hygiene and self-esteem that these matters are attended to by a carer. Through no fault of their own, many people’s teeth are neglected during periods of serious illness. Once you have returned home, arrange an appointment with your dentist as soon as possible. If you have difficulty attending a dental practice, enquire about community dental services. Using an electric toothbrush can be helpful if you have residual weakness in your hands. More advice can be found on the British Society for Disability and Oral Health website . Diet During illness, nutritional needs are at their peak, but it is not unusual for patients to lose their appetites or taste for food. Worry and fear often accompany illness and can also contribute to loss of appetite. Good nutrition can be a powerful ally in the process of recovery, so if you need advice, ask to speak to a nutritionist. If taste has been affected, this will usually improve with time. Plastic utensils can be used if bitter or metallic tastes are experienced whilst eating. Sometimes taste changes can be related to medications, but drugs should not be discontinued without first consulting your GP. Try to eat a healthy, balanced diet and keep consumption of sugary and processed foods, and drinks that are high in caffeine or alcohol to a minimum. There is some excellent advice on nutrition on the NHS website. Some in our community enjoy an anti-inflammatory diet, finding it helps with residual nerve pain or weakness. Some choose to avoid, or cut back on, alcohol as they find it can make residual symptoms feel stronger. Your Immune System Although caused by your immune system malfunctioning, GBS does not weaken or damage your immune system, and having had GBS does not mean that your immune system is compromised. However, many people feel a bit rundown when they’re recovering from a lengthy illness, and you may be more prone to pick up colds and other bugs until you’re back to full fitness. Regular exercise and maintaining a healthy diet and sleep regime will all help during recovery. There is anecdotal evidence, and lots of hype surrounding supplements and alternative remedies, but very few are known to have real benefits. Most people are able to get the vitamins they need from their diet, but if you wish to take dietary supplements, please talk to your doctor first as they will not only be able to advise you on anything that may help you during recovery, but can warn you against any that may negatively impact you. Exercise and Rest During the recovery stages, physiotherapy, occupational therapy (OT) and speech and language therapy play a vital role in the rehabilitation process as well as maximizing functional ability. At some point during rehabilitation the rate of recovery will plateau, and it is often at this point that patients will be discharged from all the support services on which they may have relied. It is also possible that patients may be placed ‘on review’. This means that you may be followed up at regular intervals and can telephone for advice in-between but don’t attend the clinic as often as you did before. The role of exercise in the ongoing rehabilitation for patients with GBS is still to some extent unclear and clinical trials are being carried out to improve our understanding. However, there is evidence that where weakness and fatigue are problems, participation in regular graded exercise can be beneficial. Exercise can help to improve your muscle strength and reduce your overall sense of fatigue. It can also aid sleep and support mood through the production of endorphins. Other benefits include helping your heart and lungs remain healthy and making you feel more positive about yourself. However, it may take weeks or even months before you feel some of the benefits, so it is important to pace yourself. You will find lots of exercises online, including seated exercises, or you could ask your GP or physiotherapist about how to start regular exercise and what exercises might be right for you. Recovery from GBS is not a race, and you also need to get plenty of rest, but try to avoid napping and develop instead a regular sleep pattern. Visit the NHS website for advice on exercise: https://www.nhs.uk/live-well/exercise/ and also for advice on sleep: https://www.nhs.uk/live-well/sleep-and-tiredness/ Pain Some people do not experience pain, but even if they had none during the active phase of the syndrome, it may occur during the recovery phase. The problem tends to resolve as recovery proceeds, but it can become an ongoing issue. Being in pain naturally impacts on mood and the ability to cope with everyday situations. Your family and friends might expect you to be ‘back to normal’ once you are discharged from hospital, not realising that in many cases, there is still a very long way to go in terms of recovery. It is important to talk to your family and friends about this, so that they understand what you are going through and why you might be irritable and difficult to live with at times. Other Sources of Support: Pain Concern https://painconcern.org.uk/ British Pain Society https://www.britishpainsociety.org/ Pain Association Scotland https://painassociation.co.uk/ Welsh Pain Society https://www.welshpainsociety.org.uk/ Pain Relief Foundation https://painrelieffoundation.org.uk/ Pain Relief Ireland https://painreliefireland.ie/ Support and Rehab Going Hom Assessment and Care Plan Residual Symptoms Preventative Measures Hospital Follow Up Physio Hygiene Diet Immune Exercise Pain Residual Symptoms and GBS It is normal to experience persistent symptoms over the weeks and months after discharge from hospital following GBS. These symptoms vary from patient to patient but are often felt particularly strongly in the hands and feet. Below we have a list of residual symptoms we find are frequently mentioned. This is not an exhaustive list, you may experience other residual symptoms not listed. Nor should you expect to experience each symptom (if any) on the list. Aching in limbs Clawing of hands/toes Cramp Fatigue Foot drop Loss of balance Nerve Pain Numb/Loss of Feeling Tingling/Pins-and-Needles Weakness It is normal for these symptoms to fluctuate a bit, being worse when you are particularly tired, stressed or affected by illness, such as a cold, sore throat or flu. Timeline For most people, these side effects gradually decrease over time. There is no fixed or standard timeline for recovery. It can help to keep a diary of your residual symptoms - noting date, symptom, and severity. This way, if your recovery is slow, you can still see visual improvement. During this time, you may also experience some of the above sensations returning/strengthening. Fluctuation is natural, and is very unlikely to be a recurrence of GBS, however, if you are concerned please consult a doctor for peace of mind. I haven't fully recovered Unfortunately, around 15% of people will not make a full or 'good' recovery, and will experience permanent or long term mobility and dexterity problems. If this happens, there may be a need for a wheelchair or another mobility aid. Persistent pain and fatigue may also be a long term issue that needs to be managed. If you find you have a residual symptom that is not improving, and is causing a significant negative impact in your life (particularly pain, or mobility), please consult your GP or Consultant to ask about management strategies. You can also join our online Zoom support calls to talk with others with experience of residuals, or arrange 1-to-1 Peer Support with someone we can match you with. If residuals are impacting your mood negatively, we also have an Emotional Support service you may wish to access. Gullain-Barré Syndrome Advice for Carers Hospital discharge can bring mixed emotions. Of course you’re glad to have your family member home, but it is quite normal to feel a bit daunted by what lies ahead, especially if you are now the main carer. On this page we have some practical suggestion that can help you in this new role, and some help contact details and/or resources you may wish to access. Quick Fact: Informal/Unpaid Carer The Department of Health and Social Care has described an informal/unpaid carer as: “… someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction” Ask for a needs assessment for the person you’re caring for You need this before the council can recommend services such as equipment, home adaptations, help from a paid carer, etc. Get a carer's assessment This can be requested at the same time as a needs assessment, via social services at your local council. Don’t be afraid to ask for help Ask family and friends (shopping, respite, etc), and contact carers’ organisations or Citizens Advice for benefits advice and other support. Look after yourself Eat a healthy diet, maintain a regular sleep pattern and make time for exercise, preferably in the fresh air or at your local gym or pool, away from the care setting. Remember to rest Put some activities on hold. Take some time for yourself by arranging respite care from a friend or relative, or through social services. Recognise limitations Both those of the person you’re caring for and your own. Let them try to do things for themselves if they are able, but bear in mind their safety and yours. Look after your mental health Talk to each other about your experiences and frustrations during illness and recovery. Talk to your GP if either of you is struggling. Be mindful of risks Be aware of temperature (cooker, iron, hot bath water, hot drinks), risk of falls due to poor balance, and dropping or spilling things due to weakness. Diet and exercise If appetite and taste are affected, ask about vitamin supplements to help maintain dietary needs. Ask the community physio about exercises to do between visits. Don't lose sight of your relationship Whatever your relationship is to the person you’re caring for, make time for it. Do things together that you both enjoy and that feel ‘normal’. Get in touch with Inflammatory Neuropathies UK We provide information and support, organise peer support via phone or video link, virtual group chats, and run an active and supportive Facebook group. Hospital discharge can bring mixed emotions. Of course you’re glad to have your family member home, but it is quite normal to feel a bit daunted by what lies ahead, especially if you are now the main carer. On this page we have some practical suggestion that can help you in this new role, and some help contact details and/or resources you may wish to access. IN simple terms: Informal/Unpaid Carer The Department of Health and Social Care has described an informal/unpaid carer as: “… someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction” Other sources of support Looking after someone you love doesn’t have to mean struggling alone. There are organisations out there who offer advice and practical support to carers, so reach out and see what help is available to you. NHS advice Carers UK Carers Scotland Carers Wales Carers Northern Ireland Family Carers Ireland Carers Trust Help for young carers Citizens Advice UK Citizens Information RoI Find your local social services England Scotland Wales Northern Ireland Republic of Ireland My child has been diagnosed with GBS My Child has been Diagnosed with Guillain-Barré Syndrome (GBS), what do I do? Although more common in adults, Guillain-Barré syndrome can affect anyone of any age. The encouraging news is that children tend to be less severely affected than adults, and in most cases make a very good recovery. Even so, it is distressing for any parent to see their child debilitated by illness, and we hope that knowing a little bit about what to expect may help, especially in the early stages following diagnosis. Don’t forget your child needs to be told what is happening and will be reassured by familiar faces and voices. If you would like to talk to another parent of a child affected by GBS, please contact Inflammatory Neuropathies UK, and we will arrange contact with one of our support volunteers. The following information has been adapted from TheSchoolRun : an online resource for parents of children at primary school More detailed information is published online by Contact a Family. If you want to access a specific topic in this section immediately, click the headings below, or click here to return to the main GBS topic hub . How is Your Child’s Condition Managed? What is Paediatric Intensive Care? Things You Can Do To Help Rehabilitation & Outcome Going Home Back to School BTS Catching Up With Work BTS Fitting In BTS Individual Healthcare Plan How is your Child's Condition Managed? Diagnosis, treatment and recovery will follow a similar path for children as for adults, and are covered elsewhere in this booklet. Paediatric services tend to be very self-contained, and you will have access to support that you would not experience in an adult setting. The following information is specific to differences between adult and paediatric services. It is important your child is treated in a centre familiar with GBS and with intensive care facilities should they be required, so they may be moved to a hospital you do not routinely use. Most of your child’s care will be ‘supportive’ for breathing, feeding, bowel or bladder functions. Physiotherapy is needed to ensure good joint mobility and to keep the chest clear. People likely to be involved in your child’s care: you, your child and your family paediatric nurses and nurse practitioners, doctors and neurologists paediatric intensive care nurses and doctors neurophysiologist, who does the nerve conduction study physiotherapists, to help with movement and breathing speech therapist, to help with feeding and communication occupational therapist, to help maximise recovery clinical psychologist Other staff you may meet could include dietician, health care assistants, family liaison nurses, play specialists, chaplains and interpreters. What is Paediatric Intensive Care? Around 10% of children with GBS will become so weak that they cannot breathe without the support of a ventilator. Understandably this can be a frightening situation for a child who is still fully aware of everything going on around him or her. Parents and carers must provide the child with all the positive support needed to avoid unnecessary trauma. Things You Can Do To Help Even if they can’t respond verbally, your child will be conscious (unless placed in an induced coma for a time to reduce stress and anxiety) and can hear what is being said. Talk about things that matter to your child (a pet, the football results, family events, messages from friends, etc). Bring a favourite soft toy for them to cuddle. Your child may become extremely frustrated especially if he or she cannot speak. Try to work out ways of communicating, such as picture cards that they can respond to by touch, blinking or pointing with their eyes or pointer on a headband. Ask the paediatric team for support in communicating with your child if they are non-verbal. Rehabiliation and Outcome The majority of children make a full recovery from Guillain-Barré syndrome without any lasting signs of having had the condition, but a small number may have some persisting problems, such as weakness of the hand and foot muscles. Most recovery is seen in the first six to twelve months, but gradual improvements can continue for five years and beyond. Keep in touch with school, and once your child is on the road to recovery, ask their teachers for any resources they can access to help them catch up with what they would have been doing at school. Going Home Although recovery can be a long and drawn-out process, there are ways of helping children to cope. Doctors can prescribe medication to counter pain. Rest, relaxation, massage and physiotherapy are all helpful. Occupational therapists will discuss the suitability of the home environment and tell you how to access any specialised equipment that might be needed. Hydrotherapy and swimming can be very beneficial, as the water is weight-bearing allowing freer movement. Consider going for a family bike ride once your child is strong enough, and even look at an activity such as horse-riding, as this can help with balance as well as the psychological benefits associated with being around animals (contact ‘Riding for the Disabled’, https://www.rda.org.uk/ ). Exercise is much easier when children are engaged, so it helps a lot if it is something fun and enjoyable. Since children are usually very active and move around without thinking, observing what they do naturally is a good indicator of their capabilities. Your child may feel the cold and get tired more easily, or they may lose their appetite or complain of things tasting different. The trauma of GBS may also have an effect on their mood or behaviour. They may become frustrated, angry and upset at not being able to do everything that their friends can, and that they could do before. All of this is normal. It is important to listen to them, understand what they are feeling, and try to find things that will help. Be patient. These problems are temporary and will improve with time, but talk to your GP if you are concerned and feel further support is needed. Back to School Thousands of children live with health issues that involve long periods of absence from school. At some stage, these children will face the unenviable task of going back to school and reintegrating into their former class and its usual daily routines. Catching up with work and friendships can often be difficult, but a good school will do all it can to ease your child’s passage back into school life. Returning to School: Catching Up With Work When your child is ready to return to school, the thought of catching up on weeks of missed work can be daunting. But, says Lesley Black, special educational needs (SEN) advisor at the charity Contact a Family, ‘no school will want to overwhelm a child who has been unwell or dealing with difficult circumstances by expecting them to do extra homework or catch up on work during playtimes.’ Schools may prioritise catching up with work in maths and English – the core subjects – over other subjects. It’s quite common for schools to have small groups of children who need support with numeracy or literacy, and children who’ve been away from school will often slot into one of these. They may be given extra one-to-one help by a teaching assistant (TA) to help them catch up. If you want to give your child a boost at home, speak to their teacher about how you can best help, such as games-based learning activities online that consolidate maths and English skills, or practical things you can do like reading aloud and cooking together. However, be aware that if your child has been ill they might find the school day very tiring, and may not be up to doing much homework. Returning to School: Fitting In Despite the fact that schools are under increasing pressure to ensure children achieve, your child’s school is likely to be far more concerned about their wellbeing as they return to school. Your school should help your child to keep in touch with their classmates while they’re absent, for example through visits, emails, letters or video calls. They also have a duty to help your child reintegrate once they’re well enough for school. Your child may feel awkward if they’re bombarded with questions about why they’ve been away. Sometimes, they’re so reluctant to draw attention to themselves that they put up with discomfort or distress rather than asking a teacher for help. Some children, however, are happier with everything out in the open and even like to stand up in front of the class to explain what’s been happening. If your child has a specialist nurse or a social worker, they may be happy to visit the class, either with or without your child, to answer their classmates’ questions. ‘It’s important that schools are sensitive about your child’s needs when they’re considering what information to share with their classmates and the wider school community, and that they make sure your child has someone they can ask for help,’ Lesley says. ‘This could be a school counsellor or the special educational needs co-ordinator (SENCO) rather than their class teacher.’ Returning to School: The Individual Healthcare Plan A key part of your child’s return to school after illness may be the creation of an Individual Healthcare Plan . This is a formal document that sets out things like: What their condition is. What medication they take. Who, in the school community, can administer their medication. What to do in an emergency. Arrangements that need to be made to enable your child to attend school, such as a quiet rest area . ‘You and your child should be central in drawing up the individual healthcare plan,’ says Lesley. Other people involved in your child’s care may also be involved, such as their GP, paediatrician or specialist nurse. The plan will identify if anyone needs to be given special training to administer medication or otherwise help care for your child at school. If so, someone from your child’s medical team is likely to arrange this. The plan should be reviewed regularly, and at least once a year. Depending on the level of recovery or any residual disability, it may be necessary for your child to return to school in a wheelchair, and school facilities should be checked to make they are suitable for your child’s needs. A welfare officer from the local education authority (LEA) can visit to arrange adaptations, and can sometimes provide equipment for use in schools. Like any other institution, the ability of the school to cope depends on the willingness of those involved, as much as the building’s design and facilities. Before your child returns to school, arrange a consultation with headteacher and SENCO to explain what if any limitations they have. How is your Child's Condition Managed What is Paediatric IC Things You Can Do To Help - Child Child Rehab Child Going Home Back to School What is the Advice on GBS and Vaccinations? What is the advice surrounding vaccinations and Guillain-Barré Syndrome (GBS)? Professor Michael Lunn MA MBBS FRCP PhD, Consultant Neurologist and Professor of Clinical Neurology, National Hospital for Neurology and Neurosurgery, Queen Square, London advises: “One vaccine is not the same as another. The only reason that one advises against flu vaccine in someone with GBS is if they actually had GBS in the 6 week window after a flu vaccine and then only out of an abundance of caution which is not based on any real science. The rate of GBS after flu vaccine in all assessed years after 1976 has been about 1 per million and no study has linked vaccination to recurrence of GBS or CIDP. COVID vaccine is nothing like flu vaccine. Although there have been a small number of people who have developed GBS for the first time following the COVID vaccine, the risk of serious illness and complications from COVID are greater.” Most vaccinations do not cause GBS. The influenza (‘flu) vaccine changes every year. In some years this has caused a few cases of GBS, most notably in 1976. The risk remains extremely small. For every one million people who receive an influenza vaccine, only about one case of GBS is caused. In most years, influenza vaccine does not cause GBS at all. Although some neurologists advise people to avoid vaccinations for 6-12 months after onset of GBS, this is purely precautionary. Several scientific studies have shown very little or no causal link between vaccinations and GBS, concluding that vaccinations do not trigger a recurrence and are as safe for people who have had GBS as for anyone else. GBS is a one-off condition that is unlikely to happen again. After recovering from GBS, the risk of ever developing GBS again (many years later) is about 1 in 30 (2 – 5%). The risk of triggering GBS from the annual seasonal flu vaccine is far lower than the risk from flu infection. Most people don’t need a flu jab. However, if you are in an at-risk group, or you live or work closely with people for whom flu might be severe or life-threatening, then you should be vaccinated, to protect yourself and others. Public Health England states in The national influenza immunisation programme 2020 to 2021 that: ‘Previous GBS is not a contraindication to influenza vaccination. A UK study found no association between GBS and influenza vaccines although there was a strong association between GBS and influenza-like illness. A causal relationship between immunisation with influenza vaccine and GBS has not been established.’ This is further supported by the Medicines & Healthcare products Regulatory Agency (MHRA) which states: ‘The balance of epidemiological evidence is not sufficient to confirm that currently used influenza vaccines are causally associated with the development of GBS. As GBS also occurs naturally in the vaccinated population, and particularly because flu-like illness is a known risk factor for GBS, a number of cases are reported each year in temporal association with vaccination. This does not mean the vaccine was the cause. Recent data supports the findings made in previous studies that an influenza vaccination may trigger GBS in fewer than 1 in 1,000,000 people vaccinated. There were approximately 14,000,000 people vaccinated in the UK during 2019/20 and there were 11 reports submitted through the yellow card scheme for the same period. These may be true side-effects, or they may be due to concurrent diagnosed or undiagnosed illness, other medicines or they may be purely co-incidental events that would have occurred anyway in the absence of therapy. Based on current evidence, the MHRA findings are that these reports do not indicate a causal relationship between influenza vaccine and GBS.’ Inflammatory Neuropathies UK adds that this is supported by independent research showing colds and flu-like illnesses are triggers for GBS. The seasonal flu vaccination is a very low risk trigger, with approximately 1 case of GBS triggered per 1,000,000 vaccinations compared with 1 case of GBS per 60,000 cases of flu(1) . A large retrospective study(2) entitled Vaccines and the risk of Guillain-Barré syndrome was published in 2020. In comparing 1,056 cases of GBS with 4,312 controls, Chen et al found no increased risk of GBS or its recurrence among either children or adults within 180 days following vaccinations of any kind, including influenza vaccination. Therefore, previous case reports of GBS shortly after receiving several other vaccines were probably merely coincidental. On vaccinations in general, our Medical Advisory Board advises: DON’T have unnecessary vaccines for travel but DO have all travel vaccines that are recommended for the particular area you are travelling to. DO have all vaccines that are ‘necessary’. This includes the flu vaccine (if you are in an at risk group), MMR, DTP, HIF, COVID-19, etc. There are monitoring programmes ongoing so a link would be picked up if it occurred. COVID-19 is a more serious disease than influenza and more easily caught. Most people with GBS or CIDP should receive any of the COVID-19 vaccines, except perhaps people with a history of severe allergy. Vaccines currently in use are amongst the safest medicines available. However, there is no simple ‘yes or no’ answer, and each person must weigh up the risks of not having a vaccination against the very small possible risk from having it. Having relatively mild side effects such as numbness and tingling is quite common following a vaccination, and is almost certainly nothing to be concerned about. If you have had GBS in the past, or if you have an associated chronic neuropathy such as CIDP, a vaccination might cause a slight ‘flare-up’ of symptoms due to your immune system being stimulated. Most will only last a few days, but if they last longer than this, or if symptoms get worse or start spreading, then I would suggest contacting your GP. Anyone can report side effects of medication or vaccines, regardless of severity, and if you would like to do so, please follow this link: https://coronavirus-yellowcard.mhra.gov.uk/ (1) Jeffrey C. Kwong, Priya P. Vasa, Michael A. Campitelli, Steven Hawken, Kumanan Wilson, Laura C. Rosella, Therese A. Stukel, Natasha S. Crowcroft, Allison J. McGeer, Lorne Zinman and Shelley L. Deeks The risk of Guillain-Barré Syndrome following seasonal influenza vaccination and influenza healthcare encounters, a self-controlled study. The Lancet Infectious Diseases, Vol. 13, No. 9, p730–731 Published: June 28, 2013 (2) Chen, Y., Zhang, J., Chu, X. et al. Vaccines and the risk of Guillain-Barré syndrome. Eur J Epidemiol 35, 363–370 (2020). Other Acute Inflammatory Neuropathies These are not variants of GBS but different diseases. We include them here because they are ‘acute’, meaning starting rapidly within weeks, and caused by nerve inflammation. Brachial Neuritis Brachial neuritis, also known as neuralgic amyotrophy or Parsonage-Turner syndrome, is a localised severe form of peripheral nerve inflammation causing pain then weakness in one shoulder, arm or hand. It affects 1-2 people per 100,000 per year and occurs unexpectedly. Typically it starts suddenly with sharp, severe pain in one shoulder or arm. The pain improves after a few weeks leaving weakness (and perhaps numbness) in the same place. The muscles become thin. It affects nerves in the brachial plexus, which is a bundle of nerves in the shoulder travelling between neck and arm. It usually affects just one side, but sometimes affects both arms, or the diaphragm (a breathing muscle) and almost never the legs. The cause is unknown except sometimes it is genetic. It typically improves slowly over 1-2 years but may leave some permanent weakness. It usually never happens again. How is Brachial Neuritis diagnosed? Brachial neuritis is difficult to diagnose early because the pain is often thought to be a shoulder joint injury or nerve compression. It is diagnosed by neurological examination, usually supported by an EMG test. An MRI may be needed to rule out other conditions. Your GP may refer you to a hospital specialist. Treatment There is no proven treatment. Painkillers are usually needed. Corticosteroids may be given if it is diagnosed early, but probably don’t help after the pain has gone. Physiotherapy often helps. Over time, brachial neuritis will improve on its own. Vascultic Neuropathy Vasculitis is a disease causing inflammation of blood vessels. This may block the flow of blood which carries oxygen, leading to damage. It can affect any organ in the body often the kidneys, lungs, heart, bowel, skin, and sometimes the peripheral nerves, called Vasculitic Neuropathy. This may happen with or without vasculitis in other organs. What are the symptoms of Vasculitic Neuropathy? Vasculitic Neuropathy develops more slowly than GBS and is usually less severe. Classically there is pain, numbness and weakness in one hand or foot, which starts suddenly and persists. Then over the next few weeks or months a similar problem happens in other parts of the body, known as ‘mononeuritis multiplex’. These areas can merge so it affects both feet and hands. It may cause a floppy foot (‘footdrop’). Symptoms are variable but often include: Unlike many of the other peripheral neuropathies, vasculitic neuropathy can be very asymmetric and affect one limb more than the rest. How is Vasculitic Neuropathy Diagnosed? Blood tests usually show markers of inflammation or antibodies. Vasculitis may be diagnosed in another part of the body. Nerve conduction tests (EMG) can show neuropathy. Some people need a biopsy of nerve or muscle. Treatment The inflammation is usually suppressed by a combination of corticosteroids and strong immunosuppressive treatment. Treatment may be led by a rheumatologist, or kidney specialist. Nerve pain can be treated with a number of medications, some of which were originally developed for treating depression or epilepsy. Sources of support For more information about this condition contact one of the following charities: Vasculitis UK: www.vasculitis.org.uk Versus Arthritis: www.versusarthritis.org British Lung Foundation: www.blf.org

Newsletters One of the most important things we do as a charity is make sure we’re really connecting with you — our community. Every day, you put your trust in us. You open up about your worries, lean on us for support, share your stories, and generously give to our cause. That means the world to us, and as you're so open with us, it’s only right that we keep you fully in the loop about our activities and actions. With that in mind, we’ve got two newsletters we send out regularly to keep you posted on everything happening in the Inflammatory Neuropathies UK world. First up is our monthly IN brief - a quick, four-page snapshot that keeps you in the know about what we’re working on and what’s coming up. Then there’s our quarterly Lowdown - this is roughly twenty pages packed with updates, personal stories from our incredible supporters, and a real behind-the-scenes look at what’s been going on across the charity. If something’s happening at Inflammatory Neuropathies UK, you’ll hear about it there. You can find an archive of our older Updates and Lowdown's over on our previous GAIN website, and scroll down for the latest from Inflammatory Neuropathies UK. Newsletter Archive (GAIN) Previous editions: IN brief | June 25 | #1 IN brief | July 25 | #2 IN brief | August 25 | #3 IN brief | October 25 | #4 IN brief | November 25 #5 IN brief | January 26 | #6 IN brief | February 26 | #7 IN brief | April 26 | #8 IN brief | May 26 | #9 INdepth | May 25 | #1 INdepth | September 25 | #2 INdepth | December 25 | #3 INdepth | March 26 | #4 INdepth | June 26 | #5 Our latest newsletter can be enjoyed below, or downloaded by clicking here

Downloads Factsheets Read More Information Guides Read More Awareness Read More Factsheets We want to provide information that is easy to understand, and accessible for everyone. That is why we have created a series of one page fact sheets. They are designed to give you a quick introduction into GBS, CIDP, MMN, Autoimmune Conditions, and Inflammatory Neuropathies. GBS CIDP MMN Autoimmune Conditions Inflammatory Neuropathies About Us If you want more in depth information then you can explore the detailed descriptions in our Information Hub over on the old GAIN website. Don't worry, a more robust and in-depth Information Hub is on its way here. These factsheets are ideal for sharing with friends and family to help explain conditions, or to act as an introduction to Inflammatory Neuropathies UK and what we do. We would love to hear your feedback on these. Let us know your thoughts by emailling hello@inflammatoryneuropathies.uk Information Guides Guillain-Barré syndrome, CIDP and other associated inflammatory neuropathies can have a devastating effect on those diagnosed and their family and friends, they can also be complex and difficult things to understand. Whether you've been diagnosed with an inflammatory neuropathy, you're supporting a loved one (or you're a carer), or you simply want to learn more about these conditions, we have created these information packs to help explain what is happening. Please feel free to download our information free of charge. (Downloads are currently only in English) GBS Information Book CIDP Information Book Quick Guide Awareness Posters One of the difficult parts of living with an Inflammatory Neuropathy is explaining to your friends, family, colleagues, and other peers what is happening to you. Despite being rare conditions, Inflammatory Neuropathies as a whole impact 1000s of people annually. Yet these conditions remain unknown to many in the general public. Events like the annual May Awareness Month are the perfect time to help educate the public. We have created some handy resources you may like to use on your social media, or download and print. Materials Some of materials include:

AGM Material To access the pre-read material for the 2025 Annual General Meeting, please click the headers below. If you have any questions or issues with these documents, please reach out to hello@inflammatoryneuropathies.uk . We look forward to seeing you in person or online on October 4th. Constitution Changes Information Accounts 2025 Trustee Pen Pictures

Health Emotional Support Read More Physio (coming soon) Read More Diet Read More Emotional Health Support There is no question that our physical health and our mental health are inextricably linked. Therefore, it follows that anyone with an Inflammatory Neuropathy is probably going through emotional challenges as well - and these can affect work, relationships, our sense of who we are and our wellbeing. In conjunction with Rareminds, we offer a free emotional support service which is available to anyone who is over 18 and has been impacted by an Inflammatory Neuropathy. The service provides a safe and confidential space to talk through issues such as anxiety, low mood, isolation, unpredictable symptoms, or adjusting to life with a chronic condition. Up to 12 confidential sessions may be taken up, by video or phone, with both daytime and evening appointments available. The service is led by Dr. Stephanie Yin, a psychotherapist and psychologist with professional and lived experience of rare conditions, along with other members of the Rareminds team who have undertaken additional training on Counselling for Rare Diseases. To arrange an initial consultation, email stephanie@rareminds.org , using the subject line “The Inflammatory Neuropathies UK Counselling Service.” We know talking about mental health can be difficult and, for some, acknowledging that you could do with a chat can be a big step. But, as this is a confidential service, we do not have access to your details. Your time and conversations with Stephanie or Poppy are entirely private. If you feel you, or someone you know, could use counselling around living with an Inflammatory Neuropathy, get in touch with Stephanie. Physio After announcing our Emotional Support service to support mental health, Inflammatory Neuropathies UK's next goal is to support physical health. Please check back for more information on our future physio services. Diet A great place to start learning about what to eat is through the NHS Eatwell Guide . It shows how much of what we eat should come from each food group to achieve a healthy, balanced diet. Importantly, it applies to most of us regardless of dietary preferences, weights, ages, and ethnic origins. Please note, if you’re someone with special dietary requirements or medical needs, you may wish to chat with a registered dietitian to ensure the guide fits your needs. Two things to keep in mind though. Don’t let perfect be the enemy of good. We know recovering from GBS or living with a chronic condition can bring mental challenges along with physical symptoms. While we encourage you to cut down on sugar and eat your five fruits and vegetables a day, remember to allow a treat here and there. Don’t beat yourself up if you don’t get the nutritional balance right with every meal, just try and balance it out through the week. Don’t be afraid or embarrassed to ask for help. The cost of living has impacted all of us, and for those living with conditions that can impact their ability to work, this can cause significant strain. Citizens Advice have produced some helpful pages that cover accessing foodbanks, along with crisis grants and benefits, and more. Click the link closest to your region to learn more. England Scotland Wales Northern Ireland The EatWell Guide The guide Try to eat your 5 fruits and vegetables a day but remember fruit juice should be limited to 150ml (about 5.07 oz) a day to avoid too much sugar. Sugar is not needed in our diet, so should be eaten less often and in smaller amounts. A sweet treat is still allowed though! Remember to drink 6-8 glasses of fluid a day. Water, low-fat milks, low-sugar/sugar free drinks, along with tea and coffee all count. Starchy, fibrous food should make up over a third of what we eat – think high fibre or wholegrain varieties of pasta and bread. Add protein to your diet through fish (aim at least two portions of fish a week, one of which being an oily fish such as salmon, sardines or mackerel – you’ll get a lot of Omega 3 from these which helps reduce inflammation) or lean cuts of meat and mince while cutting down on red and processed meat. Don’t eat meat? No problem, think pules such as beans, peas, and lentils. They’re low in fat and help your fibre goals. Another great source of protein is dairy, or dairy alternatives such as soya. Milk, cheese, yogurt and fromage frais provide protein and are a strong source of calcium. Cook with vegetable, rapeseed, olive, and sunflower oils, these are unsaturated fats and therefore healthier. Though they should still be eaten in small amounts as they are high in energy (calories). Speaking of calories, women should have around 2,000 calories a day, and men should have around 2,500. However, this varies from person to person and can depend on how active you are. Apps like MyFitnessPal can help you track calories through the day and can serve as a food diary. When you’re not feeling great, you may find yourself more sensitive to certain foods. Being able to identify what does not agree with you through a diary may be beneficial for you.

INsight Information Hub We know that a diagnosis of GBS, CIDP or another associated inflammatory neuropathy can be an incredibly complex time, and it can be hard to understand what is happening to you or a loved one. This information hub can point you to resources at all levels, from easy to read blogs to more complex and robust fact sheets. The information has been prepared by our Medical Advisory Board, and can also be read in booklet form via our Downloads page. If it’s all a bit much and you need some advice or have any questions you can’t find here, please get in touch with the team. Contact Us It may also help to talk to someone who has lived experience of what you’re going through. Visit our Peer Support area to learn more. Peer Support GBS Info Hub Information on Guillain-Barré Read More CIDP Info Hub Information on CIDP Read More MMN Info Hub Information on MMN Read More Downloads Fact sheets, information booklets, posters, and flyers. Read More Podcasts Some of the best ways to share our stories are through live conversation. Read More Driving and Travel Need to know the next steps for independent travel? Visit here. Read More

Volunteer We are a small charity and, as such, really depend on the incredible help we get from our volunteers. This amazing team of people work with us so we can better raise awareness, reach and support more people and, ultimately, realise our goals. Most of our volunteers have lived experience of GBS, CIDP, MMN or a related condition, but, in order to do more, we need more people to help. Could that be you? If you feel you can help then please get in touch - there are a myriad of ways volunteers can contribute to our work; a few of which are listed below. Providing Peer Support Connecting with people impacted by GBS, CIDP, and other Inflammatory Neuropathies. Using your lived experience to provide information, advice, and guidance. Facilitating and Supporting a Local Get Together Organise a space where people can come together and mutually support each other over a cup of tea. Being a Local Champion Be our representative in your local area, You can do this by linking into local clinical facilities and community groups and supporting local people impacted by any of the Inflammatory Neuropathies. Being an Online Champion Be our representative online. Support those impacted by GBS, CIDP, or other conditions in online forums and meetings. Raising Awareness Word of mouth speaks volumes. Support us by raising awareness about Inflammatory Neuropathies - and us. The more people know, the more they too can help. Research Support Data is king. And we need your help in tasks like data collection. As you can see our needs are very varied. Just choose what you feel you would enjoy the most. We will do all we can to help by being super flexible regarding time commitments and also helping you by providing the following: Induction and training Ongoing support and supervision An annual appraisal Regular volunteers meetings and updates Resources and materials Access to our team when you need them We hope you will join us. If you are interested, simply fill in the form below.

Frequently asked questions Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum CIDP IvIg Double Vision Diagnosis CIDP & AIDP Question 3 Question 4 Question 5 etc CIDP Ivig Double Vision One of our members with CIDP has been struggling with double vision for the last few days following his latest treatment of IvIg. He has been referred by his optician to an ophthalmologist, but unfortunately, has to wait two weeks before he can be seen. He has been receiving IvIg for two years, and this is the first time the problem has occurred. He has emailed his neurologist but hasn’t had a response yet, and in the meantime was wondering if it was something we were familiar with, as he is quite concerned. Is double vision a recognised symptom of CIDP / treatment with IvIg, and if so, is it likely to be long term or something that should pass relatively quickly? Is it something that spectacles could help correct or is he stuck with it for as long as it lasts? Answer: He does need to be seen. It could be a viscosity problem with the ivig. It may well settle. Sometimes prism glasses help but a diagnosis is needed. Diagnosis CIDP & AIDP We have come across two people this week who have been diagnosed with CIDP and AIDP concurrently. Is this something you’ve encountered? Answer: A few patients get recurrent attacks of GBS with recovery in between. I suspect this is all one disease not two but It is what you call it is tricky. Question 3 Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Answer: Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum Question 4 Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Answer: Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum Question 5 Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Answer: Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum

Medically sourced information on Chronic Inflammatory Demyelinating Polyradiculoneuroapthy (CIDP) CIDP Welcome to our Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) Information Hub Here we breakdown what is happening to you or a loved in simple but proper terms. Our information is sourced from our Medical Advisory Board, medical texts, and recognised support providers. If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will strive to point you in the right direction. If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will strive to point you in the right direction. What is Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP?) We discuss the basics of CIDP – what it is, some of the symptoms you may experience, different types, and share some simple language explanations. Read More How is CIDP Diagnosed? We cover examinations, nerve tests such as (EMG and neurophysiology), and lumbar punctures. Read More Treatment for CIDP inc. Hospital Containing information on various treatments for CIDP, and discusses the concept of a 'cure'. We also cover how you can help someone with CIDP should a longer stay in hospital be required. Read More My child has been diagnosed with CIDP, what do I do? Contains information on condition management, paediatric intensive care, how you can help, rehab, going home, and an indepth look at return to school. Read More CIDP - Advice for Carers Entering a new role as carer for a family member can be daunting. We cover some pratical suggestions, and have some useful carer support links and resources for you to access. Read More Mental Health, Well Being, and Work following CIDP Diagnosis Contains information on how to care for your mental health whether you’re living with CIDP or a loved one had a diagnosis. We discuss sexual relationships, before a section on returning to work – how to approach and talk to your employer after an absence. Read More What happens next? We cover support and rehab, prognosis, physio, and pain management, hygiene, and finances Read More What is the advice surrounding vaccinations and CIDP? Containing information on vaccinations via our Medical Advisory Board and sourced journals. Read More Other Chronic Inflammatory Neuropathies Covering MMN, Lewis-Sumner, and POEMS Read More Anchor 1 What is Chronic Inflammatory Demyelinating Polyradiculoneuropathy This section will introduce you to Chronic Inflammatory Demyelinating Polyradiculoneuropathy, known more commonly as CIDP. What is CIDP? What are the Symptoms of CIDP? Acute Onset CIDP (A-CIDP) What is CIDP? Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called Chronic Relapsing Polyneuropathy , is caused by damage to the myelin sheath of the peripheral nerves. You need to have had symptoms for at least 8 weeks for CIDP to be considered. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. IN simple terms: Polyneuropathy Neuro means "string", or "nerve". Pathy , in the medical world, refers to a disorder or system of medicine. So Neuropathy simply means a condition impacting the nerves. Poly is a prefix meaning "many", so a Polyneuropathy is a condition impacting multiple nerves. IN simple terms: Peripheral Nerves Your brain and spine are called the Central Nervous System (CNS). T he Peripheral Nervous System (PNS) is the network of nerves carrying messages to and from the CNS across the body. They work together as the Nervous System. For example, if you see flames and smell smoke, these messages are passed along the PNS to the CNS. Your brain processes this information, and, realising there is danger, sends messages back along the PNS to your muscles, commanding you to walk, or wheel, to safety. IN simple terms: Myelin & Axons The Myelin is an insulating layer, or sheath, that surrounds nerve fibres, think of it as the plastic protective casing that surrounds an electrical wire. The electrical wire in this case is an Axon , or simply, the Nerve Fibre's. They allow signals to travel between your PNS and CNS (see quick fact on your nervous system). Demyelination is the name for damage to the Myelin. Now it is all a little more complicated than that, but this just gives you a quick way to visualise it. The course of CIDP varies widely among individuals. Some may have a bout of CIDP followed by spontaneous recovery, while others may have many bouts with partial recovery in between relapses. The disease is a treatable cause of acquired neuropathy and initiation of early treatment to prevent loss of nerve Axons is recommended. However, some individuals are left with some residual numbness or weakness, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease. What are the Symptoms of CIDP? Symptoms of CIDP usually develop slowly starting in the feet and legs before progressing to other parts of the body. The symptoms experienced vary considerably between patients and may be vague and confusing to both the patient and the doctor. Subjective symptoms such as fatigue and sensory disturbance are difficult to communicate. These symptoms may remain mild and result in only minor disruption of the patent’s normal life. Alternatively, they may become progressive and gradually worse over a period of several weeks, months or even years — sometimes but very rarely, to the extent that the patient is bed bound with profound weakness of the arms. Look for: numbness pins and needles muscle weakness fatigue loss of deep tendon reflexes Acute Onset CIDP (A-CIDP) Due to similarity in the early stages up to 16% of patients will be misdiagnosed with GBS (AIDP), meaning patients may not receive the best treatment for their condition or understand the long-term outcomes. Patients with A-CIDP are less likely to have autonomic nervous system involvement, facial weakness, a preceding infectious illness, or the need for mechanical ventilation. Around 8%-16% of GBS patients may relapse shortly after improvement or stabilization following initial immunological therapy. This is an important clinical issue because maintenance treatment is often required in CIDP. The diagnosis of A-CIDP should be considered when the condition of a patient with GBS deteriorates after nine weeks from onset, or when deterioration occurs three times or more. What is CIDP? Symptoms of CIDP A-CIDP What Causes CIDP and How is it Diagnosed? Although sometimes a trigger is apparent, and in contrast to GBS, most patients with CIDP cannot identify a preceding viral or bacterial infection. GBS normally progresses over 2-4 weeks, then plateaus, improves over several months and does not usually recur. CIDP has ongoing symptoms for over 8 weeks and usually does not improve unless ongoing treatment is given. How is CIDP Diagnosed? CIDP can be difficult to diagnose as there is no single, conclusive diagnostic test for it. The symptoms are often vague and can be produced by a number of different conditions. Therefore, a long period of time may elapse before a diagnosis of CIDP is made. A diagnosis of CIDP requires the following: Weakness of at least two limbs Complete or partial loss of tendon reflexes Progression or relapse eight weeks or more after initial disease onset Evidence of myelin damage in the peripheral nerves from nerve conduction studies A diagnosis of CIDP is usually made on clinical grounds but with evidence from: Nerve conduction studies Lumbar puncture MRI scan Nerve biopsy Ruling out other diseases that can cause demyelinating neuropathy Family history to completely rule out an inherited neuropathy Contact with possible toxins or drugs that could cause neuropathy Other conditions – diabetes, alcohol dependency, arthritis or hepatitis Nerve Test (EMG, neurophysiology) To measure how your nerves are working, a specialist clinical neurophysiologist usually does these two tests at the same time. nerve conduction studies (NCS) – mild electric shocks are given through the skin to activate the nerves and measure the signals travelling along your arms and legs. electromyogram (EMG) – tiny needles are inserted into several muscles to record their electrical activity. This can show if there is damage to the axons. In people with GBS or CIDP, these tests will usually show that signals are not travelling along the nerves properly. Lumbar Puncture A lumbar puncture is a procedure to remove some fluid from around the spinal cord (the nerves running up the spine), known as cerebro-spinal fluid (CSF). It involves lying on one side and having a needle inserted into the base of the spine under local anaesthetic. The sample of fluid will be checked for signs of problems that can cause similar symptoms such as an infection. Occasionally the diagnosis can be delayed for a few days while they are checking the results, and your doctor may start the treatment just to be on the safe side. Treatment for CIDP & Hospital Advice The treatments with clinically proven efficacy in CIDP are immunoglobulin, steroids, and plasma exchange, all of which have been shown to be superior to placebo in clinical trials. In other studies, they have been shown to be equivalent to one another in efficacy: between 50 and 80% of patients respond to each of the treatments. Failure to respond to one treatment does not mean that the other treatments won’t work either (unless the diagnosis if wrong). 15% of patients do not respond to any of the three treatments. Sometimes it may be necessary for someone diagnosed with CIDP to enter hospital for a longer stay while awaiting initial treatment/being treated. Not everyone with CIDP will require a stay in hospital, but if CIDP comes on very rapidly, presenting more like GBS, it may be necessary to be admitted to ICU for a time. This won’t apply to them majority of people diagnosed with CIDP. Intravenous Immunoglobulin Plasma Exchange (Plasmapheresis) Corticosteroids Is there a Cure? Hospital ICU Support and Rehabilitation General Prognosis What Family & Friends can do to Help Communication Mental Stimulation Financial Worries Comfort Coming off the Ventilator Stay Positive Intravenous Immunoglobulin The most commonly used treatment, particularly for motor dominant CIDP, is intravenous immunoglobulin (IVIg). Immunoglobulin is made from donated blood that contains healthy antibodies which can help stop the harmful antibodies damaging your nerves. If it works there will be a quick response in a matter of weeks, with improvement in strength and function. Some patients (15-30%) only need a single course. IVIg is given in hospital and if it needs to be given long term by regular infusion typically every 6 weeks. This can have an impact on the patient’s work, travel plans, or ability to look after family members, as their infusions need to be fitted around these factors. In some parts of the country it is possible to receive subcutaneous immunoglobulin (also known as SCIg or SubCut) at home which is more convenient for patients. With SCIg, immunoglobulin is delivered by a needle into the fatty tissues under the skin, where it enters the circulation slowly over a few days. There isn’t much room under the skin, so the dose of immunoglobulin given is smaller than with IVIg. For this reason, SCIg is usually given every week. Nearly everybody on SCIg learns how to have treatment at home, with each session lasting up to about two hours. As with all treatments, side effects can occur with IVIg, although usually these are minimal and do not require the treatment to be stopped. It is helpful if you drink plenty of fluid whilst you are receiving IVIg. Transient side effects, which often respond to changes in the rate of administration of the infusion, include headache and low blood pressure and occasionally, a rash can develop. Severe complications from IVIg use are very rare. IVIg thickens the blood slightly so particular consideration of its use is given to patients with kidney failure, previous heart disease, stroke or blood clots. Plasma Exchange (Plasmapheresis) Plasma exchange, also called plasmapheresis, is sometimes used instead of IVIg. This involves being attached to a machine that removes blood from a vein and filters out the harmful antibodies that are attacking your Plasma exchange involves having the patient attached to a machine to remove some of their blood and replace with other blood product (eg human albumin), over 5 days. PE should be considered in preference to IVIg in cases of non-motor dominant CIDP. Corticosteroids Corticosteroids should also be considered in preference to IVIg in cases of non-motor dominant CIDP. Corticosteroids are easy to administer either as daily or alternate daily treatments, or monthly oral or intravenous regimes. In older patients, there are often competing medical conditions which mean that they need to be used with caution or avoided altogether e.g. if a patient has poorly controlled diabetes or osteoporosis, or if they have recurrent chest infections and immunosuppression might put them at risk of overwhelming infection. A younger patient may have fewer comorbidities but would also potentially be facing longer term treatment. If a patient needs very frequent IVIg infusions then a neurologist might consider adding in a steroid or another immunosuppressant agent, and if IVIg does not offer clear benefits, then steroids are the obvious next treatment option. There is a difference in cost between the treatment options, with both IVIg and plasma exchange costing thousands of pounds per course whilst steroids are relatively cheap, but this is not a deciding factor in which treatment is provided. Is there a Cure? It depends how you define ‘cure’, but in CIDP literature this has been defined as ‘remission of over 5 years off treatment’, which has been reported in about 25% of patients treated with steroids for less than one year. Neurologists would more usually use the term ‘remission’ in CIDP (i.e. stability without treatment). Shorter term remission is more common than ‘cure’: there is evidence from studies that up to 40% of patients with CIDP may be in remission after one year of treatment with either steroids or IVIg. It is for this reason that it is advised that the need for treatment is reviewed on an annual basis if patients are no longer showing any or little fluctuation in their clinical symptoms. Although many people remain free of symptoms following remission, there is no guarantee that there will be no further relapse in the future. 15% of patients do not respond to any of the three treatments. Hospital If you do require a stay in hospital, you’ll be closely monitored to check for any problems with your lungs, heart or other body functions. You’ll also be given treatment to relieve your symptoms and reduce the risk of further problems. This may include: A ventilator if you’re having difficulty breathing A feeding tube if you have swallowing problems Painkillers if you’re in pain Being gently moved around on a regular basis to avoid bed sores and keep your joints healthy A thin tube called a catheter in your urethra (the tube that carries urine out of the body) if you have difficulty peeing Laxatives if you have constipation Medicine and/or special leg stockings to prevent blood clots Once you start to improve, you may also need extra support to aid your recovery. Depending on the severity of symptoms, and how well they respond to treatment, you may need help with everyday tasks, your home may need adaptations, or you may need a care package in place. Support and Rehabilitation If you do need time in hospital, you may require some form of rehabilitation before returning home, to help you regain strength, dexterity and mobility. This could be within a rehabilitation unit in the hospital, or you may be transferred to a specialist rehab unit elsewhere. You may also be offered psychological support, as a potentially life-changing illness such as CIDP or another chronic inflammatory neuropathy can also severely impact your mental wellbeing. General Prognosis Treatment of CIDP is usually very effective with about 80% of new cases having a dramatic response to therapy. Although some patients go into a long-term remission after a short course of treatment, many require long term treatment of one form or another. Drug treatments are generally thought to work by suppressing the autoimmune response, which in turn reduces the disabling symptoms of the disease. What Family & Friends Can Do To Help (WFFCDTH) If someone is hospitalised, especially in ICU, here is how you can help. WFFCDTH | Communication Understand as much as you can about this condition. If you are the person visiting most frequently, introduce yourself to the doctor in charge of the case and don’t be afraid to ask questions. Some doctors are better than others at explaining things, so let them know if you don’t understand. Get to know the regular nursing staff and ask for a daily update on progress. Physiotherapy can start while the patient is still paralysed. Get to know the physio and keep yourself updated on procedure and progress. They can tell you how you can help with exercises between physio sessions. Talk to the speech therapist about communication aids. If facial muscles aren’t paralysed, then lip reading could help. Some people retain finger movement and can write letters in the air or on the palm of the hand. A common method of communication with a patient whose movements are restricted to the eyes and eyelids, is to use a question and answer technique with the patient answering with one blink for ‘yes’ and two for ‘no’. Pointing to the letters on an alphabet board and asking ‘Is it on this line? Is this the letter?’, will help. If the patient is strong enough, they may be able to point at an alphabet board with a finger or pointer attached to a headband. A hospital communication book contains lots of words and images useful in a hospital setting and can pre-empt many questions or comments a ventilated patient is likely to make. Inflammatory Neuropathies UK will send you a free copy on request, that you can leave at the bedside for staff and visitors to use. Another useful tool is an app developed by David Muir, who was ventilated due to muscular dystrophy and became non-verbal as a result. The app is called Passy Muir Trachtools and is free to download in your app store for Apple and android devices. It has several pre-recorded phrases, and allows you to record your own customized words and messages. When you find a communication method that works, make sure you share this with staff and other visitors so they can adopt the same practice. WFFCDTH | Mental Stimulation Remember they are socially isolated and will need to be stimulated. Tell them what day it is and talk about what is happening in the outside world. Read extracts from the news and encourage friends and family to send cards and texts about what they are up to. Remember to include them in all conversations, even if they can’t respond verbally. Make use of your tech! Read to them or offer to play an audio book on their smartphone or tablet. Download films, favourite TV shows and music onto their device and watch or listen together if you can, with one earbud each. WFFCDTH | Financial Worries Financial concerns may be causing anxiety, especially if the patient is the main wage-earner. Get in touch with the Social Worker at the hospital who will advise on benefits. Alternatively, Citizens’ Advice offers free expert advice which you access online, or by phoning your local office. Stay in regular contact with employers and make sure you understand the absence and returning to work processes. There is more information about returning to work later in the booklet. Inflammatory Neuropathies UK may be able to help through our Personal Grants Scheme with travel costs for frequent journeys visiting a family member in hospital. WFFCDTH | Comfort The little things you can do will mean a lot. Do they need a hair wash or a shave? Do nails need manicuring? Can you help by massaging their hands or feet? Eating and drinking while you’re visiting might have a negative impact, if they are unable to swallow anything, so make sure you have something before you arrive. Some patients have pain in the acute stage, others as recovery kicks in, and some have no pain at all. Try to understand what pain they have, if any, and the frequency and type of medication being given to alleviate it. CIDP patients may tire easily, may be on sedative drugs and may nap quite frequently. They might not want visitors over and above one or two close family members, especially in the early stages following diagnosis and the start of recovery. At the end of your visit, make sure you leave them in the best possible frame of mind. Turn off any device that might cause irritation or disturbance and make sure they have what they need or can attract attention if required. WFFCDTH | Coming off the Ventilator As things improve, they will be taken off the ventilator, often starting with just a few minutes and building up gradually. Patients can get quite panicky at the beginning of this procedure as they have become reliant on the ventilator and might not believe that they can breathe again without it. Reassure them that their natural ability to breathe is returning and that this is the start of getting well. Once off the ventilator, it is likely that they will soon be transferred to a general ward for a time before moving into a rehab unit or being discharged home. Moving out of ICU, where patients are monitored continuously, can be stressful in itself, but it’s all part of recovery, and no one will be moved until the medical team is satisfied that they are ready. WFFCDTH | Stay Positive Your role is to offer love, comfort and reassurance during this difficult period. Try to remain calm and positive and give lots of encouragement on progress. Keep yourself well informed by the medical staff. Writing a few lines each day in a journal will help you keep a perspective on progress. You can share this over the coming weeks to show how far they’ve come since those early days. For close family, this period of the illness can be an exhausting time of stress, uncertainty and disruption, as you struggle to maintain other commitments alongside frequent hospital visits, so don’t forget to look after yourself and stay well. If it is difficult for you to visit as frequently as you would like, we might be able to help you keep in touch with a smart tablet. Contact Inflammatory Neuropathies UK for further details. IG Plasma Corticosteroids Cure FriendsFamily Hospital My child has been diagnosed with CIDP My Child has been Diagnosed with Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP), what do I do? Although more common in adults, CIDP can affect anyone of any age. It is distressing for any parent to see their child debilitated by illness, and we hope that knowing a little bit about what to expect may help, especially in the early stages following diagnosis. Don’t forget your child needs to be told what is happening and will be reassured by familiar faces and voices. If you would like to talk to another parent of a child affected by CIDP, please contact Inflammatory Neuropathies UK, and we will arrange contact with one of our support volunteers. The following information has been adapted from TheSchoolRun : an online resource for parents of children at primary school More detailed information is published online by Contact a Family. How is Your Child’s Condition Managed? What is Paediatric Intensive Care? Things You Can Do To Help Going Home Back to School BTS Catching Up With Work BTS Fitting In BTS Individual Healthcare Plan How is your Child's Condition Managed? Diagnosis, treatment and recovery will follow a similar path for children as for adults. Paediatric services tend to be very self-contained, and you will have access to support that you would not experience in an adult setting. The following information is specific to differences between adult and paediatric services. It is important your child is treated in a centre familiar with CIDP and with intensive care facilities should they be required, so they may be moved to a hospital you do not routinely use. Most of your child’s care will be ‘supportive’ for breathing, feeding, bowel or bladder functions. Physiotherapy is needed to ensure good joint mobility and to keep the chest clear. People likely to be involved in your child’s care: You, your child and your family Paediatric Nurses and Nurse Practitioners, Doctors and Neurologists Paediatric Intensive Care Nurses and Doctors Neurophysiologist, who does the nerve conduction study Physiotherapists, to help with movement and breathing Speech Therapist, to help with feeding and communication Occupational Therapist, to help maximise recovery Clinical Psychologist Other staff you may meet could include Dieticians, Health Care Assistants, Family Liaison Nurses, Play Specialists, Chaplains and Interpreters. What is Paediatric Intensive Care? A small amount of children with CIDP will initially become so weak that they cannot breathe without the support of a ventilator. This may require a stay in Paediatric Intensive Care, it's similar to adult Intensive Care, but the staff (many of whom are listed above) specialise in working with young people. Understandably this can be a frightening situation for a child who is still fully aware of everything going on around him or her. Parents and carers must provide the child with all the positive support needed to avoid unnecessary trauma. Things You Can Do To Help Even if they can’t respond verbally, your child will be conscious (unless placed in an induced coma for a time to reduce stress and anxiety) and can hear what is being said. Talk about things that matter to your child (a pet, the football results, family events, messages from friends, etc). Bring a favourite soft toy for them to cuddle. Your child may become extremely frustrated especially if he or she cannot speak. Try to work out ways of communicating, such as picture cards that they can respond to by touch, blinking or pointing with their eyes or pointer on a headband. Ask the paediatric team for support in communicating with your child if they are non-verbal. Going Home There are ways of helping children to cope and adjust to what is happening to them. Doctors can prescribe medication to counter pain. Rest, relaxation, massage and physiotherapy are all helpful. Occupational therapists will discuss the suitability of the home environment and tell you how to access any specialised equipment that might be needed. Hydrotherapy and swimming can be very beneficial, as the water is weight-bearing allowing freer movement. Consider going for a family bike ride once your child is strong enough, and even look at an activity such as horse-riding, as this can help with balance as well as the psychological benefits associated with being around animals (contact ‘Riding for the Disabled’, https://www.rda.org.uk/ ). Exercise is much easier when children are engaged, so it helps a lot if it is something fun and enjoyable. Since children are usually very active and move around without thinking, observing what they do naturally is a good indicator of their capabilities. Your child may feel the cold and get tired more easily, or they may lose their appetite or complain of things tasting different. The trauma of GBS may also have an effect on their mood or behaviour. They may become frustrated, angry and upset at not being able to do everything that their friends can, and that they could do before. All of this is normal. It is important to listen to them, understand what they are feeling, and try to find things that will help. Be patient. These problems are temporary and will improve with time, but talk to your GP if you are concerned and feel further support is needed. Back to School Thousands of children live with health issues that involve long periods of absence from school. At some stage, these children will face the unenviable task of going back to school and reintegrating into their former class and its usual daily routines. Catching up with work and friendships can often be difficult, but a good school will do all it can to ease your child’s passage back into school life. Returning to School: Catching Up With Work When your child is ready to return to school, the thought of catching up on weeks of missed work can be daunting. But, says Lesley Black, special educational needs (SEN) advisor at the charity Contact a Family, ‘no school will want to overwhelm a child who has been unwell or dealing with difficult circumstances by expecting them to do extra homework or catch up on work during playtimes.’ Schools may prioritise catching up with work in maths and English – the core subjects – over other subjects. It’s quite common for schools to have small groups of children who need support with numeracy or literacy, and children who’ve been away from school will often slot into one of these. They may be given extra one-to-one help by a teaching assistant (TA) to help them catch up. If you want to give your child a boost at home, speak to their teacher about how you can best help, such as games-based learning activities online that consolidate maths and English skills, or practical things you can do like reading aloud and cooking together. However, be aware that if your child has been ill they might find the school day very tiring, and may not be up to doing much homework. Returning to School: Fitting In Despite the fact that schools are under increasing pressure to ensure children achieve, your child’s school is likely to be far more concerned about their wellbeing as they return to school. Your school should help your child to keep in touch with their classmates while they’re absent, for example through visits, emails, letters or video calls. They also have a duty to help your child reintegrate once they’re well enough for school. Your child may feel awkward if they’re bombarded with questions about why they’ve been away. Sometimes, they’re so reluctant to draw attention to themselves that they put up with discomfort or distress rather than asking a teacher for help. Some children, however, are happier with everything out in the open and even like to stand up in front of the class to explain what’s been happening. If your child has a specialist nurse or a social worker, they may be happy to visit the class, either with or without your child, to answer their classmates’ questions. ‘It’s important that schools are sensitive about your child’s needs when they’re considering what information to share with their classmates and the wider school community, and that they make sure your child has someone they can ask for help,’ Lesley says. ‘This could be a school counsellor or the special educational needs co-ordinator (SENCO) rather than their class teacher.’ Returning to School: The Individual Healthcare Plan A key part of your child’s return to school after illness may be the creation of an Individual Healthcare Plan . This is a formal document that sets out things like: What their condition is. What medication they take. Who, in the school community, can administer their medication. What to do in an emergency. Arrangements that need to be made to enable your child to attend school, such as a quiet rest area . ‘You and your child should be central in drawing up the individual healthcare plan,’ says Lesley. Other people involved in your child’s care may also be involved, such as their GP, paediatrician or specialist nurse. The plan will identify if anyone needs to be given special training to administer medication or otherwise help care for your child at school. If so, someone from your child’s medical team is likely to arrange this. The plan should be reviewed regularly, and at least once a year. Depending on the level of recovery or any residual disability, it may be necessary for your child to return to school in a wheelchair, and school facilities should be checked to make they are suitable for your child’s needs. A welfare officer from the local education authority (LEA) can visit to arrange adaptations, and can sometimes provide equipment for use in schools. Like any other institution, the ability of the school to cope depends on the willingness of those involved, as much as the building’s design and facilities. Before your child returns to school, arrange a consultation with headteacher and SENCO to explain what if any limitations they have. How is your Child's Condition Managed What is Paediatric IC Things You Can Do To Help - Child Child Going Home Back to School CIDP Advice for Carers Hospital discharge can bring mixed emotions. Of course you’re glad to have your family member home, but it is quite normal to feel a bit daunted by what lies ahead, especially if you are now the main carer. On this page we have some practical suggestion that can help you in this new role, and some help contact details and/or resources you may wish to access. Quick Fact: Informal/Unpaid Carer The Department of Health and Social Care has described an informal/unpaid carer as: “… someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction” Ask for a needs assessment for the person you’re caring for You need this before the council can recommend services such as equipment, home adaptations, help from a paid carer, etc. Get a carer's assessment This can be requested at the same time as a needs assessment, via social services at your local council. Don’t be afraid to ask for help Ask family and friends (shopping, respite, etc), and contact carers’ organisations or Citizens Advice for benefits advice and other support. Look after yourself Eat a healthy diet, maintain a regular sleep pattern and make time for exercise, preferably in the fresh air or at your local gym or pool, away from the care setting. Remember to rest Put some activities on hold. Take some time for yourself by arranging respite care from a friend or relative, or through social services. Recognise limitations Both those of the person you’re caring for and your own. Let them try to do things for themselves if they are able, but bear in mind their safety and yours. Look after your mental health Talk to each other about your experiences and frustrations during illness and recovery. Talk to your GP if either of you is struggling. Be mindful of risks Be aware of temperature (cooker, iron, hot bath water, hot drinks), risk of falls due to poor balance, and dropping or spilling things due to weakness. Diet and exercise If appetite and taste are affected, ask about vitamin supplements to help maintain dietary needs. Ask the community physio about exercises to do between visits. Don't lose sight of your relationship Whatever your relationship is to the person you’re caring for, make time for it. Do things together that you both enjoy and that feel ‘normal’. Get in touch with Inflammatory Neuropathies UK We provide information and support, organise peer support via phone or video link, virtual group chats, and run an active and supportive Facebook group. Hospital discharge can bring mixed emotions. Of course you’re glad to have your family member home, but it is quite normal to feel a bit daunted by what lies ahead, especially if you are now the main carer. On this page we have some practical suggestion that can help you in this new role, and some help contact details and/or resources you may wish to access. Quick Fact: Informal/Unpaid Carer The Department of Health and Social Care has described an informal/unpaid carer as: “… someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction” Other sources of support Looking after someone you love doesn’t have to mean struggling alone. There are organisations out there who offer advice and practical support to carers, so reach out and see what help is available to you. NHS advice Carers UK Carers Scotland Carers Wales Carers Northern Ireland Family Carers Ireland Carers Trust Help for young carers Citizens Advice UK Citizens Information RoI Find your local social services England Scotland Wales Northern Ireland Republic of Ireland Mental Health, Well-Being, and Work following CIDP diagnosis This section will provide useful links and sources to help support your mental health during CIDP. If you’re a carer or have experienced a loved one going through an illness it can also be a traumatic time, and these links may also help you. We also discuss getting back to work and how to communicate with your employer. Click one of the headers below to access the information directly: Mental Health & Wellbeing Sexual Relationships Getting Back To Work Back To Work: After a Long Absence Back To Work: Making Reasonable Adjustments Back To Work: Phased Return Back To Work: Pay During A Phased Return To Work Mental Health & Wellbeing With all the changes in your health it is not uncommon to feel anxious or angry, and this can even be helpful to a degree in providing the mental and physical energy that is needed to anticipate and tackle problems. An acute stress reaction is recognised as being a normal part of the process of adjusting to a life change, and it can often help to talk things through with a partner or close friend. However, please seek advice and help from your GP if you are finding it difficult to cope or to sleep, or if you are feeling overwhelmed emotionally. The impact of being severely affected by a sudden, frightening and potentially life-changing condition such as CIDP can leave people with symptoms of PTSD (post-traumatic stress disorder). It can develop immediately, or many months or even years after a traumatic event. If you are concerned about low mood, irritability, panic attacks, anxiety, flashbacks, physical sensations such as trembling or sweating, poor concentration or sleeping problems, please talk to your GP about getting some counselling. We may be able to provide access to counselling - please click here for more Some other sources of support are shown below. 5 steps to mental wellbeing Mindfulness Post-Traumatic Stress Disorder Mental health and wellbeing MIND Young Minds Sexual Relationships CIDP and other chronic neuropathies can bring on problems in any relationship, and sexual relationships are not excluded. Dealing with a long-term illness or disability can put a great strain on a relationship, particularly when one partner is partially or totally dependent on the other. As well as coming to terms with a physical disability, the emotional upheaval can interfere with a couple’s sex life and this can be difficult to talk about. This can mean that the once close, intimate relationship can become distant and stressful for both partners. Help is available so speak to your GP or a relationship counsellor. Relate https://www.relate.org.uk/ Getting Back To Work When someone is ready to return to work after an absence, the employer should have a procedure they follow, or an Occupational Health service. You can check your workplace’s absence policy for this. Your workplace might have a policy for meeting with employees after absences. Back To Work: After a Long Absence If there’s been a long absence or the employee has an ongoing health condition, it’s a good idea for the employer and employee to meet and: Make sure the employee is ready to return to work. Talk about any work updates that happened while they were off. Look at any recommendations from the employee’s doctor. See if they need any support. If the employee has a disability, see if changes are needed in the workplace to remove or reduce any disadvantages (‘reasonable adjustments’). Consider a referral to a medical service such as occupational health. Discuss an employee assistance programme (EAP) if it’s available. Agree on a plan that suits you both, for example a phased return to work. Back To Work: Making Reasonable Adjustments If an employee has a disability, by law their employer must consider making ‘reasonable adjustments’ if needed to help them return to work. Reasonable adjustments could include making changes to the employee’s: Workstation or working equipment. Working hours. Duties or tasks. For the best course of action, the employer should take advice from: The employee themself. The employee’s doctor. Their Occupational Health adviser. This can help get people back to work quicker prevent any further problems. Back To Work: Phased Return A ‘phased return to work’ is when someone who’s been absent might need to come back to work on: Reduced hours. Lighter duties. Different duties. For example, after a: Long-term illness. Serious injury. Bereavement. The employer or their HR manager and the employee should agree on a plan for how long this will be for. For example, they could agree to review how things are going after a month and then decide to increase the working hours or duties, or they might decide they need to stay reduced for longer. The employer or HR manager should continue to regularly review the employee’s health and wellbeing in the workplace and make new adjustments if necessary. Back To Work: Pay During A Phased Return To Work If the employee returns to their normal duties but on reduced hours, they should get their normal rate of pay for those hours they work. For the time they’re not able to work, they should get sick pay if they’re entitled to it. If the employee is doing lighter duties, it’s up to the employer and employee to agree on a rate of pay. It’s a good idea to make sure this agreement is put in writing. This information is provided by ACAS (the Advisory, Conciliation and Arbitration Service). Further information regarding absence and returning to work is available on the ACAS website: https://www.acas.org.uk/absence-from-work MentalH Sexual Relationships Getting Back to Work After Long Absence Reasonable Adjustments Phased Return Pay Phased Return What happens after CIDP? CIDP - So what happens next? What happens next? That’s a big question for a lot of people after diagnosis and/or leaving hospital. This section covers everything from rehab to hygiene to pain management. To skip to the information directly, just hit a header below: Support and Rehabilitation Financial Help General Prognosis Pregnancy Physiotherapy Hygiene, Cleanliness and Teeth Diet Your Immune System Exercise and Rest Pain Support and Rehabilitation If you do need time in hospital, you may require some form of rehabilitation before returning home, to help you regain strength, dexterity and mobility. This could be within a rehabilitation unit in the hospital, or you may be transferred to a specialist rehab unit elsewhere. You may also be offered psychological support, as a potentially life-changing illness such as CIDP or another chronic inflammatory neuropathy can also severely impact your mental wellbeing. Specialists who might support you through rehab: Physiotherapist: will help you with movement issues, re-building muscle, and learning to walk Occupational Therapist (OT): will identify potential problem areas and work out some solutions Speech and Language Therapist: will help with communication and swallowing problems Counsellor or Psychologist: someone you can discuss your problems with and help you find ways to cope emotionally Financial Help Financial concerns may be causing anxiety, especially if you are the main wage-earner and unable to work. If you are employed, stay in regular contact with employers and make sure you understand the absence and returning to work processes. Inflammatory Neuropathies UK may be able to help with the cost of frequent journeys to visit a family member in hospital. Get in touch and ask about our Personal Grants Scheme . Once you leave hospital, or if you are already receiving treatment as an outpatient, you could be entitled to benefits to help you support yourself and your family. The benefits system is complex and subject to change, but Citizens Advice has up-to-date information on their website, and they can even help you make an application for benefits such as Personal Independence Payment (PIP) or Universal Credit: www.citizensadvice.org.uk Further information on benefits can be found at: www.gov.uk/browse/benefits If adaptations to your home are needed, such as installing a ramp or downstairs bathroom for example, it is worth contacting your local council to see if you are entitled to help via a Disabled Facilities Grant: England and Wales Scotland Northern Ireland Republic of Ireland If you are on a low income, or someone in your household is severely and permanently disabled, you may be entitled to a reduction in Council Tax. Further information is available an Carers UK. General Prognosis Treatment of CIDP is usually very effective with about 80% of new cases having a dramatic response to therapy. Although some patients go into a long-term remission after a short course of treatment, many require long term treatment as described earlier. Pregnancy Neither IVIg nor plasma exchange is contraindicated during pregnancy. However, as plasma exchange requires additional considerations and monitoring, IVIg might be preferred. Physiotherapy If you have difficulty accessing physiotherapy, but feel it would benefit you, or if you find yourself on a lengthy waiting list, please contact the office at Inflammatory Neuropathies UK. Hygiene, Cleanliness and Teeth Personal cleanliness for those who cannot care for themselves fully can be a problem. Many returning home from hospital may have reduced use of their hands, usually temporarily, but sometimes permanently. Many will be unable to wash themselves, brush their hair, use the lavatory, wipe their bottoms, brush their teeth, cut their nails etc. It is important for both hygiene and self-esteem that these matters are attended to by a carer. Through no fault of their own, many people’s teeth are neglected during periods of serious illness. Once you have returned home, arrange an appointment with your dentist as soon as possible. If you have difficulty attending a dental practice, enquire about community dental services. Using an electric toothbrush can be helpful if you have residual weakness in your hands. More advice can be found on the British Society for Disability and Oral Health website . Diet During illness, nutritional needs are at their peak, but it is not unusual for patients to lose their appetites or taste for food. Worry and fear often accompany illness and can also contribute to loss of appetite. Good nutrition can be a powerful ally in the process of recovery, so if you need advice, ask to speak to a nutritionist. If taste has been affected, this will usually improve with time. Plastic utensils can be used if bitter or metallic tastes are experienced whilst eating. Sometimes taste changes can be related to medications, but drugs should not be discontinued without first consulting your GP. Try to eat a healthy, balanced diet and keep consumption of sugary and processed foods, and drinks that are high in caffeine or alcohol to a minimum. There is some excellent advice on nutrition on the NHS website : Your Immune System Although caused by your immune system malfunctioning, CIDP does not weaken or damage your immune system, and having CIDP does not mean that your immune system is compromised, unless you are being treated with steroids. Regular exercise and maintaining a healthy diet and sleep regime will all help during recovery. There is anecdotal evidence, and lots of hype surrounding supplements and alternative remedies, but very few are known to have real benefits. Most people are able to get the vitamins they need from their diet, but if you wish to take dietary supplements, your doctor (rather than Google!) will be able to advise you on anything that may help you during recovery. Exercise and Rest Physiotherapy, occupational therapy (OT) and speech and language therapy play a vital role in maximizing functional ability. Exercise can help to improve your muscle strength and reduce your overall sense of fatigue. It can also aid sleep and support mood through the production of endorphins. Other benefits include helping your heart and lungs remain healthy and making you feel more positive about yourself. However, it may take weeks or even months before you feel some of the benefits, so it is important to pace yourself. You will find lots of exercises online, including seated exercises, or you could ask your GP or physiotherapist about how to start regular exercise and what exercises might be right for you. Visit the NHS website for advice on exercise: https://www.nhs.uk/live-well/exercise/ and also for advice on sleep: https://www.nhs.uk/live-well/sleep-and-tiredness/ Pain Being in pain naturally impacts on mood and the ability to cope with everyday situations. If you are experiencing pain, it is important to talk to your family and friends about this, so that they understand what you are going through and why you might be irritable and difficult to live with at times. Other Sources of Support: Pain Concern https://painconcern.org.uk/ British Pain Society https://www.britishpainsociety.org/ Pain Association Scotland https://painassociation.co.uk/ Welsh Pain Society https://www.welshpainsociety.org.uk/ Pain Relief Foundation https://painrelieffoundation.org.uk/ Pain Relief Ireland https://painreliefireland.ie/ Support and Rehab Financial Help General Prognosis Pregnancy Physio Hygiene Diet Immune Exercise Pain What is the advice on CIDP and vaccinations What is the advice surrounding vaccinations and Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP)? Professor Michael Lunn MA MBBS FRCP PhD, Consultant Neurologist and Professor of Clinical Neurology, National Hospital for Neurology and Neurosurgery, Queen Square, London advises: “One vaccine is not the same as another. The only reason that one advises against flu vaccine in someone with GBS is if they actually had GBS in the 6 week window after a flu vaccine and then only out of an abundance of caution which is not based on any real science. The rate of GBS after flu vaccine in all assessed years after 1976 has been about 1 per million and no study has linked vaccination to recurrence of GBS or CIDP. COVID vaccine is nothing like flu vaccine. Although there have been a small number of people who have developed GBS for the first time following the COVID vaccine, the risk of serious illness and complications from COVID are greater.” Live attenuated vaccines should be avoided by anyone whose immune system is suppressed, due to taking corticosteroids to treat CIDP for example. IN simple terms: Live Attenuated Live attenuated vaccines use a weakened (attenuated ) version of a pathogen (bacteria or virus) to stimulate an immune response without causing illness in healthy individuals. Most people don’t need a flu jab. However, if you are in an at-risk group, or you live or work closely with people for whom flu might be severe or life-threatening, then you should be vaccinated, to protect yourself and others. On vaccinations in general, our Medical Advisory Board advises: DON’T have unnecessary vaccines for travel but DO have all travel vaccines that are recommended for the particular area you are travelling to. DO have all vaccines that are ‘necessary’. This includes the flu vaccine (if you are in an at risk group), MMR, DTP, HIF, COVID-19, etc. There are monitoring programmes ongoing so a link would be picked up if it occurred. COVID-19 is a more serious disease than influenza and more easily caught. Most people with GBS or CIDP should receive any of the COVID-19 vaccines, except perhaps people with a history of severe allergy. Vaccines currently in use are amongst the safest medicines available. However, there is no simple ‘yes or no’ answer, and each person must weigh up the risks of not having a vaccination against the very small possible risk from having it. Having relatively mild side effects such as numbness and tingling is quite common following a vaccination, and is almost certainly nothing to be concerned about. If you have had GBS in the past, or if you have an associated chronic neuropathy such as CIDP, a vaccination might cause a slight ‘flare-up’ of symptoms due to your immune system being stimulated. Most will only last a few days, but if they last longer than this, or if symptoms get worse or start spreading, then I would suggest contacting your GP. Anyone can report side effects of medication or vaccines, regardless of severity, and if you would like to do so, please follow this link: https://coronavirus-yellowcard.mhra.gov.uk/ Other Chronic Inflammatory Neuropathies CIDP sounds like a very focussed ailment, but much like GBS and MMN, there are a host of variants that can cause confusion, in both diagnosis and awareness. Let’s have a look at some of these. Paraproteinaemic Demyelinating Neuropathy (PDN) Multifocal Motor Neuropathy (MMN) or MMN with Conduction Block (MMNCB) MADSAM also known as Lewis-Sumner syndrome Chronic Idiopathic Axonal Neuropathy Sensory Neuropathy POEMS Syndrome Paraproteinaemic Demyelinating Neuropathy (PDN) Some doctors regard the clinical, electrophysiological and pathological features of the demyelinating paraproteinaemic neuropathies and of CIDP as closely similar and almost indistinguishable. Sometimes described as: Chronic Demyelinating Neuropathy associated with a benign paraprotein CIDP associated with paraprotein CIDP with paraproteinaemia Antibody-producing bone marrow cells go out of control and produce large numbers of the same antibody. The antibody (or immunoglobulin) sometimes damages nerve fibres causing a peripheral neuropathy. Some doctors regard the clinical, electrophysiological and pathological features of the demyelinating paraproteinaemic neuropathies and of CIDP as closely similar and almost indistinguishable. These neuropathies are usually late-onset in terms of age and are mixed motor and sensory, although the severity of sensory loss tends to be greater compared with CIDP. There is usually more pain but less severe weakness and impairment. Most patients respond to corticosteroids, cytotoxic drugs, or plasma exchange. Multifocal Motor Neuropathy (MMN) or MMN with Conduction Block (MMNCB) Sometimes thought of as a rare variant of CIDP. However, there are differences that are more prominent than the similarities. MMN patients commonly have asymmetric weakness of the distal (far) muscles, while in CIDP, proximal (near) symmetric weakness is more common. The remitting and relapsing course that may occur in CIDP is uncommon in MMN. Patients with MMN rarely have significant sensory symptoms, unlike CIDP. Increased protein level in the cerebrospinal fluid of MMN patients is rare. Treatment with IVIg is usually effective. MADSAM also known as Lewis-Sumner syndrome Multifocal acquired demyelinating sensory and motor neuropathy is a chronic condition with similarities to multifocal motor neuropathy but with enough differences, especially in treatment, to have acquired its own definition. Some report it to be an asymmetrical variant of CIDP. MMN and MADSAM respond to IVIg. Chronic axonal neuropathies are common, particularly as a result of diabetes or alcoholism. However, the medical literature does report cases of immune-mediated chronic axonal neuropathy though there are suggestions that this is a secondary result of myelin damage that ultimately appears to be the primary cause of the condition. Sub-acute Inflammatory Demyelinating Poly(radiculo)neuropathy (SIDP) GBS is defined when the nadir (worst point) occurs within four weeks of first symptoms, and CIDP is defined when the nadir comes after at least eight weeks. An illness peaking after four weeks but before eight weeks may be called subacute and will be treated as CIDP or GBS depending on which it best resembles. Chronic Idiopathic Axonal Neuropathy If no cause for the peripheral neuropathy can be discovered, doctors call it ‘idiopathic’ that means ‘of its own cause’. This label probably covers a number of different causes which future research may uncover. With rare exceptions, chronic idiopathic axonal neuropathy occurs in older people, only worsens very slowly (and sometimes remains stationary), and does not become disabling. It is most commonly a sensory neuropathy causing numbness, tingling and discomfort in the feet that may gradually spread up the shins. People may become slightly unsteady, and weakness of the ankles may develop. The amount of pain is variable. Some people have very little pain but more weakness. Others have little weakness but more pain. Sensory Neuropathy Also known as sensory ganglionopathy, dorsal root ganglionopathy or sensory ganglionopathy, this is a rare subgroup of peripheral nervous system diseases with specific characteristics, such as the primary and selective destruction of the dorsal root ganglia (DRG) neuron in the spinal cord and the trigeminal ganglia neuron in the skull. It has a typical clinical presentation, with sensory deficits that are not dependent on length and patients often report a lack of coordination of muscle movements. There are several proposed mechanisms for the pathophysiology of the condition. The diagnosis is guided by the presenting symptoms and confirmed with diagnostic tests to differentiate from other related conditions. Treatment of sensory ganglionopathy is often difficult and patients often stabilize but fail to improve significantly. There are reports of improvement in immune-mediated and paraneoplastic sensory ganglionopathy following treatment with intravenous immunoglobulin. Quickly treating the underlying cause, such as the underlying neoplasia, may also be helpful. People that suffer from sensory neuronopathy are more likely to be affected by other autoimmune diseases. A differential diagnosis is important to distinguish sensory neuronopathy from other related conditions, such as sensory and ataxic neuropathy. These conditions may include Sjögren’s Syndrome, autoimmune hepatitis and celiac disease. POEMS Syndrome POEMS is a rare condition caused by the body producing abnormal plasma cells (a type of blood cell which produces antibodies to fight off infections). This blood disorder affects multiple organs in the body. It is named after the five common features of the syndrome described below. P olyneuropathy nerve damage leading to weakness, numbness and pain in the arms and legs O rganomegaly an enlarged spleen and/or liver E ndocrinopathy hormonal problems M -protein or Monoclonal plasma cell disorder an overproduction of abnormal plasma cells which lead to other multi system effects S kin changes darkening to skin, red spots on the body, hair growth Paraprot MMN Madsam CIAN sensory neuropathy POEMS