ME Association

1/3 Rosetta Stone Study - Summary: Three month update The #RosettaStone Study, led by Professor Danny Altmann and Professor Rosemary Boyton at @imperialcollege London, is a £1.2 million #MEAssociation –funded project investigating shared and distinct biological mechanisms in #MECFS and #LongCovid

With ME/CFS, a person may ‘look fine’, but the disease is often hidden from family and friends. Many symptoms are invisible, even when daily life is deeply affected. Please don’t assume someone is OK because they ‘look OK’. A small act of support can make a huge difference. #MECFS

@NeuroAlScotland @NeuroWales @NINCA_NI Around 1 in 6 people in the UK live with at least one neurological condition, with an estimated 600,000 new diagnoses each year. Neurological conditions are now the leading cause of ill health worldwide. They can affect anyone, at any age, at any time. #BAW2026

This year we are joining @NeuroAlScotland, @NeuroWales, and @NINCA_NI to raise awareness of how neurological illness affects mental wellbeing—especially for children and young people. #BrainAwarenessWeek

Dr Charles Shepherd Interviewed on BBC Radio 4 – listen in! Dr Charles Shepherd, MEA Hon. Medial Adviser, was interviewed on BBC Radio 4 yesterday (19th March 2026) following on from their ME/CFS feature on BBC Inside Health. Listen in: meassociation.org.uk/28cf #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

Free information sheet: Neurological – Is ME/CFS a Neurological Disease? This week is Brain Awareness Week, raising awareness of neurological conditions, including ME/CFS. But why is ME/CFS classed as a neurological condition? And what evidence is there that ME/CFS affects the brain, spinal cord, or peripheral nerves?  Find out more, here: meassociation.org.uk/bv59  #MECFS #pwME #MyalgicEncephalopathy #MyalgicEncephalomyelitis #NeurologicalIllness #BAW2026 #BrainAwarenessWeek

The Timms Review of Personal Independent Payments (PIP) has now opened to the public to submit their evidence towards the consultation. Submissions will close at 11:59pm on the 28th May 2026. Find out more on our blog: meassociation.org.uk/9cbc #MECFS #PIP #WelfareCuts #TakingThePIP

This year, we are joining @NeuroAlScotland, @NINCA_NI, & @NeuroWales in raising awareness of the understandable effect a neurological illness has on a person's mental well-being - especially related to children and young people Many people with neurological conditions often face unpredictable changes: health flareups, hospital stays, reduced social life, loss of career, finances and independence amongst a wide range of other life-altering aspects. These changes can feel overwhelming especially as the disease can cause changes in the family dynamics. It affects the person's ability to maintain a role of grandparent, parent, guardian, brother, sister, or whatever the relationship.   One of the most upsetting aspect of ME/CFS is having to accept the disease can cause a poorer quality of life, and the impact this has on life's goals. This can affect ability to undertake common occasions like graduation, living independently, marriage, having children, and other milestones, as this disease can first present for people in their 20s, 30s, 40s (although it also affects children and those in an older age bracket). Please consider helping to raise awareness of this life-changing disease #MECFS #MyalgicEncephalomyelitis #BrainAwarenessWeek #BAW2026 #MEAwareness

EDIT 18.03.26 The new version of the 3rd NHS Module appears to be available to anyone, however you do need to log-in. learninghub.nhs.uk/Resource/79376… It looks like it is a case of a completing a registration form to view the module. Do send us your feedback either in the comments OR via email: feedback@meassociation.org.uk

Think Global Health: England Closes Several Long COVID Clinics, Deserting Patients  "The closures mark a funding reversal by the National Health Service and come even as Long COVID's prevalence remains steady" The ME Association helped provide a lot of background information for this article, and would like to thank the journalist, Emma Smith. Read more: thinkglobalhealth.org/article/englan…  #LongCovid #PostCovidSyndrome #LongCovidClinics #MEAssociation

2/2: This new version as with the original version continues to be accessible to healthcare professionals only. Dr Charles Shepherd, MEA Hon. Medical Adviser, is going to check with the DHSC as to whether this new version of the e-learning module on severe ME/CFS can be made available to anyone who wants to see it.

1/2: Sharing for information only: The NHS has launched a new version of their online module, Supporting people with severe ME/CFS.  "This has been created based on feedback from learners, DHSC and internally at NHS with consideration to patient safety and how we can best help improve patient outcomes" #catalogue-details" target="_blank" rel="nofollow noopener">learninghub.nhs.uk/catalogue/mecf… #pwME #MECFS #MyalgicE #SevereME #NHS

The Telegraph: Chronic fatigue [syndrome] left me bed-bound. TMS therapy was a lifeline The Telegraph has published an opinion piece about a personal experience with using transcranial magnetic stimulation (TMS) for the treatment of ME/CFS. Read Dr Charles Shepherd, MEA Hon. Medical Adviser's response on the blog: meassociation.org.uk/or2b #MECFS #pwME #MyalgicE #TMS

WEBSITE SURVEY ON GABAPENTIN: Feedback required on medication (gabapentin) for pain in ME/CFS. Gabapentin/Neurontin as a management option for moderate or severe pain in ME/CFS. This is a prescription-only drug that is sometimes used to treat more severe or persistent pain, especially neve/neuropathic pain – which has a shooting or burning quality. Gabapentin does, however, have a number of side effects – including fatigue, muscle pain and weakness, dizziness, memory loss – which can obviously cause problems when used in ME/CFS. So the feedback from people with ME/CFS that we have obtained over the years has been very mixed. Some people report gaining benefit and without any significant problems with side-effects. However, a significant proportion of people have been unable to tolerate this drug due to the side-effects. The aim of this survey is to obtain some up to date patient evidence from people who have been, or are currently using gabapentin Thanks for your assistance! Please can you complete the survey question in this blog: meassociation.org.uk/gfan #MECFS #MyalgicEncephalomyelitis #Pain #ChronicPain #Medication #Gabapentin

Research: Does ME/CFS involve low level inflammation in the brain and nervous system? Dr Charles Shepherd, MEA Hon. Medical Adviser, comments, "There is no firm evidence to indicate that ME/CFS involves widespread inflammation in the brain and spinal cord (ie encephalitis - the 'E' in ME). However, a number of neuroimaging (brain scan) research studies have reported evidence that is consistent with low level inflammation (ie neuroinflammation) - possibly caused by an over active immune system response to an infection that triggered ME/CFS. This new research from Australia adds further support to the presence of low level neuroinflammation." meassociation.org.uk/ykrj #MECFS #pwME #MyalgicEncephalomyelitis #Research #NeurologicalIllness

Want to get involved? You can sign up for your own challenge on our website: meassociation.org.uk/get-involved/e… Or email us at fundraising@meassociation.org.uk

In April, Warren and Sam are taking part in London Landmarks Half Marathon 2026 for the MEA ‘Sadly we have personal experience of needing help from this charity. We both want to give something back to the charity and help them to continue to support people through all stages of their illness’  You can find more about Warren and Sam’s challenge or donate to support them here: justgiving.com/page/warrenand…  #MECFS #pwME #Fundraising #LondonLandmarksHalfMarathon2026

More info here: longcovidkids.org/post/invisible…

Dorset Echo: New Long Covid Kids campaign calls on MPs to take action "More than 1,000 people across the UK have written to MPs calling for greater recognition of the condition in children and young people, as part of a national campaign led by Dorset-based charity Long Covid Kids." Read more: dorsetecho.co.uk/news/25933330.…  #LongCovid #PostCovidSyndrome #LongCovidKids

Manchester Evening News: 'I was in a dark room 24/7 for 18 months': The mystery illness that left a 25-year-old man bedbound Nick Benton, from Stockport, discusses his ME/CFS and the serious crash that left him bedbound for 18 months: "I was just in a dark, silent room 24/7 with a black eye mask on and ear defenders," he told the Manchester Evening News. "I couldn't do anything - use my phone or watch TV. At times I had to be spoon-fed. I was extremely ill." Read more: manchestereveningnews.co.uk/news/greater-m…  #pwME #MECFS #SevereME #MyalgicEncephalomyelitis #MyalgicEncephalopathy

Search the free information database Medical Matters here:    meassociation.org.uk/medm

Medical Matters – ME/CFS Diagnosis Dr Charles Shepherd and the ME Association's other advisers answer questions from members of the MEA.    Q: Why are some local ME/CFS services unable to provide a diagnosis of ME/CFS?  A: meassociation.org.uk/medical-matter… #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #Diagnosis #NHS