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meassociation.org.uk
ME Association
@meassociation.org.uk
750 followers 140 following 1.2K posts
A UK registered charity for people with #MECFS and Long Covid (and Post Covid ME/CFS). We inform, educate, raise awareness, fund medical research and campaign for positive change.

RPs do not necessarily mean endorsement.

https://linktr.ee/meassociation
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meassociation.org.uk
ME Association @meassociation.org.uk · 22d
ME Association’s Rosetta Stone study was featured on BBC Inside Science!

Our largest ever research project, was featured on BBC Radio 4 Inside Science on the 8/1/2026.

Listen or read transcript here: meassociation.org.uk/zttw

#MECFS #Research
ME Association's Rosetta Stone study was featured on BBC Inside Science! - The ME Association
The ME Association's Rosetta Stone study, our largest ever research […]
meassociation.org.uk
meassociation.org.uk
1/2: When you shop online with EasyFundraising, a percentage of your purchase is donated at no extra cost to you. 

It’s a quick, free and easy way to support the ME Association while doing your usual online shopping.

#pwME #MECFS #MyalgicE #MEAssociation #Fundraising
IMAGE DESCRIPTION: Heading - "Raise free donations for the ME Association every time you shop online!" Easy fundraising and ME Association logos at the top. Logos of online retailers below, including Tesco, eBay, John Lewis, M&S and Sky.
January 30, 2026 at 1:30 PM
meassociation.org.uk
APPG on ME announcement

Tessa Munt MP has officially been appointed Chair of the APPG on ME, following the group's Annual General Meeting last week.

Read the full announcement on the blog: https://meassociation.org.uk/wtq6

#pwME #MECFS #MyalgicE
Panoramic image of the Houses of Parliament and Big Ben under a blue sky. Logos for Action for ME, the ME Association and the APPG on Myalgic Encephalomyelitis appear at the top. Text reads: “APPG on ME update: Annual General Meeting and 2026 schedule”.
January 30, 2026 at 11:04 AM
meassociation.org.uk
Nature: Population-scale sequencing resolves determinants of persistent EBV DNA

"This new research... has identified 22 genes that appear to increase the risk of developing several conditions in later life in people who have caught EBV in the past."

More: https://meassociation.org.uk/d78n

#MECFS
Nature: Population-scale sequencing resolves determinants of persistent EBV DNA - The ME Association
A new paper was published in Nature on the 28 […]
meassociation.org.uk
January 30, 2026 at 10:03 AM
meassociation.org.uk
1/2: Belfast Live: Fiona, a woman in her fifties who now has ME/CFS, shares her diagnosis came after a Covid vaccine, and this article also discusses the lack of support available for people who report vaccine injury.

https://tinyurl.com/4rts4ut6

#MECFS
'I was collateral damage' Woman left disabled after Covid vaccine speaks out
“I had no qualms about taking a vaccine, and I still support science-based medication and vaccines. All medications have side effects for some people," she said.
tinyurl.com
January 29, 2026 at 2:03 PM
meassociation.org.uk
Griffith University: Altered brain connection found in people with ME/CFS and Long COVID

“The scans show changes in the brain regions which may contribute to cognitive difficulties such as memory problems, difficulty concentrating, and slower thinking.”

https://tinyurl.com/46npe2zr

#MECFS
IMAGE DESCRIPTION: Photo of someone in an MRI Machine. ME Research UK logo. Heading - Griffith University: Altered brain connection found in people with ME/CFS and Long COVID
January 29, 2026 at 9:50 AM
meassociation.org.uk
Last year, a number of important developments took place for the ME/CFS and Long Covid communities, as outlined in this video.

The ME Association is dedicated to bringing about positive change and are hopeful to see more important developments in 2026. 

#MECFS #pwME #LongCovid #2025InReview
January 28, 2026 at 1:32 PM
meassociation.org.uk
Medical Matters – Nimodipine and ME/CFS 

Q: What is Nimodipine and is there any research supporting it's use in treating ME/CFS?
A: https://meassociation.org.uk/medical-matters/items/can-nimodipine-be-used-to-treat-me-cfs/

#pwME #MECFS #Nimodipine
IMAGE DESCRIPTION: Photo of Dr Charles Shepherd. Wording - What is Nimodipine and is there any research supporting it's use in treating ME/CFS? Please click the link to read the answer in the Medical Matters database
January 28, 2026 at 11:30 AM
meassociation.org.uk
1/3: The ME Association post-mortem research partnership with Manchester Brain Bank (2023)

"The ME Association believes that post-mortem research is a vital part of the research portfolio that we fund through the Ramsay Research Fund.”

#pwME #MECFS #MyalgicEncephalomyelitis #ManchesterBrainBank
IMAGE DESCRIPTION: Manchester Brain Bank post-mortem tissue donations. Commonly asked questions. Wording - What is the Manchester Brain Bank? The MEA funds the Manchester Brain Bank's post-mortem research via their tissue bank for people with ME/CFS. Wording - How does it work? People with ME/CFS can register to become tissue donors upon their passing, helping us to further post-mortem research into ME/CFS. Samples are then stored securely and made available to qualified researchers. Wording - How do I donate? If you would like to register as a donor, you can do so by completing the MEA Statement of Intent and make sure that this is passed along to your next of kin and solicitor (if you have one), and that you have emailed it to the Manchester Brain Bank - see link for more details.
January 28, 2026 at 10:15 AM
meassociation.org.uk
These A6 notelets feature beautiful close-ups of flowers by a photographer with ME/CFS, and come in packs of 8 (2 of each design) with envelopes.

Only £3.50 with free shipping from our online shop: https://meassociation.org.uk/product/mea-notelets-flower-power/

#MECFS #MEAssociation #pwME
IMAGE DESCRIPTION: Photo of a desk, with a notepad, coffee, and plant pot, alongside the 'flower power' notelets. Wording reads 'A6 notelets featuring beautiful photographs by a photographer with ME/CFS' MEA logo.
January 27, 2026 at 11:55 AM
meassociation.org.uk
Call or email ME Connect for free, confidential support, information, and signposting.

0808 801 0484
meconnect@meassociation.org.uk

https://meassociation.org.uk/me-connect/

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #PVFS #LongCovid #Helpline #MEConnect
IMAGE DESCRIPTION; Photo of a young woman sat in bed on her phone. Wording reads: "I was so happy to talk to someone who understands the condition". MEA logo.
January 26, 2026 at 3:11 PM
meassociation.org.uk
The Messenger: Charity event held at Altrincham Hub supports people with ME

https://www.messengernewspapers.co.uk/news/25787753.charity-event-held-altrincham-hub-supports-people/ 

#MEAssociation #MECFS #MyalgicEncephalomyelitis #Trafford
Mayor backs ME charity as Trafford event marks the unseen struggles
A charity event spotlighting ME/CFS was held on Saturday, January 17, at Altrincham Hub in Trafford, hosted by Trafford Mayor Councillor Jane Broph
www.messengernewspapers.co.uk
January 26, 2026 at 2:11 PM
meassociation.org.uk
The Courier: Fife mum’s health struggle reveals alarming lack of specialist care at NHS Fife

"Deborah Donnelly, who suffers from ME, warns she has lacked support since a Fife-based expert died over two years ago."

Read more: https://tinyurl.com/4bk4w382

#pwME #MECFS #MyalgicEncephalomyelitis
Fife mum's health struggle reveals alarming lack of specialist care at NHS Fife
Deborah Donnelly, who suffers from ME, warns she has lacked support since a Fife-based expert died over two years ago.
tinyurl.com
January 26, 2026 at 11:55 AM
meassociation.org.uk
ME Research UK have announced they are funding Prof Chris Ponting at the University of Edinburgh in a new study investigating the use of blood based biomarkers in diagnosing ME/CFS.

Dr Charles Shepherd, MEA Hon. Medical Adviser, comments on the blog: https://meassociation.org.uk/b6qr

#MECFS #pwME
ME Research UK fund Prof Chris Ponting in a new study - The ME Association
ME Research UK have announced they are funding Prof Chris […]
meassociation.org.uk
January 26, 2026 at 11:19 AM
meassociation.org.uk
Medical Matters – Post-Acute Infection Syndrome

Dr Charles Shepherd and the ME Association's other advisers answer questions from members of the MEA.   

Q: Is ME/CFS a post-acute infection syndrome (PAIS)?
A: https://tinyurl.com/2fd5tzv2

#pwME
IMAGE DESCRIPTION: Photo of Dr Charles Shepherd, MEA Hon. Medical Adviser. Wording - Is ME/CFS a post-acute infection syndrome (PAIS)? Please click the link to read the answer in the Medical Matters database.
January 23, 2026 at 3:04 PM
meassociation.org.uk
Research Square: Preprint: ME/CFS and LC Demonstrate Bioenergetic Impairment and Recovery Failure on Two-Day CPET

Read more about it and Dr Charles Shepherd's comments on the blog: https://meassociation.org.uk/83t1

#pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #CPET #Research
Research Square: Preprint: ME/CFS and LC Demonstrate Bioenergetic Impairment and Recovery Failure on Two-Day CPET - The ME Association
AI Summary The preprint for a new paper titled, ‘ME/CFS […]
meassociation.org.uk
January 23, 2026 at 11:31 AM
meassociation.org.uk
1/2 Gordon Family Update: Another Christmas in hospital for Karen & another letter from East Sussex NHS Trust’s solicitors

Karen's family write: "A few days before Christmas we received an email from Karen’s solicitor with an attached letter from ESHT solicitors."

www.change.org/p/save-karen...
Another Christmas in hospital for Karen & another letter from East Sussex NHS Trust’s solicitors
Photo: Karen with Christmas balloons and Snowmen. Hello Everyone Karen has now been in Conquest hospital for 2 years and 1 month. Karen is continuing to have TPN (IV feeding) and IV fluid in hospital....
www.change.org
January 23, 2026 at 10:19 AM
meassociation.org.uk
Mayor of Trafford hosts awareness evening to support the ME Association

The Mayor of Trafford, Cllr Jane Brophy, hosted an evocative ME/CFS awareness evening on Sat 17th Jan at Altrincham Hub to support The ME Association, one of the Mayor’s three charities.

meassociation.org.uk/iiwd
Mayor of Trafford hosts awareness evening to support the ME Association - The ME Association
The Mayor of Trafford, Cllr Jane Brophy, hosted an evocative […]
meassociation.org.uk
January 23, 2026 at 9:38 AM
meassociation.org.uk
1/2: H4ME’s Annual Report has been redesigned into concise, readable, low-effort slides to better support people with ME/CFS and Long Covid who experience visual and sensory sensitivities. 
 
Read the accessible Annual Report slides: https://meassociation.org.uk/3qo9
 
#Healthcare4ME #MECFS
Annual Report - Accessible version. - The ME Association
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a debilitating chronic condition […]
meassociation.org.uk
January 22, 2026 at 1:46 PM
meassociation.org.uk
Updated Booklet: Vitamin D and Deficiency

Dr Charles Shepherd, MEA Hon. Medical Adviser, has updated this booklet where we examine vitamin D, consider if deficiency is likely in ME/CFS and discuss how it can be treated.

Download: https://meassociation.org.uk/jnts

#pwME #MECFS #VitaminD
Updated Booklet: Vitamin D and Deficiency - The ME Association
Dr Charles Shepherd, Honorary Medical Adviser to the ME Association […]
meassociation.org.uk
January 22, 2026 at 11:41 AM
meassociation.org.uk
Show your support with an ME Association pin badge - only £3.80 with free shipping from our online shop: https://meassociation.org.uk/product/mea-round-pin-badges/

#MECFS #pwME #MyalgicEncephalomyelitis #MyalgicE #MyalgicEncephalopathy #MEAssociation #pwLongCovid #LongCovid #PostCovidSyndrome
IMAGE DESCRIPTION: Photo of the dark blue ME Association pin badge on a wooden background. Wording reads: Show your support with an ME Association pin badge. Only £3.80 with free shipping. MEA logo.
January 20, 2026 at 2:11 PM
meassociation.org.uk
Journal of Clinical Medicine: An Overview of Severe Myalgic Encephalomyelitis 

A new article which calls for "dedicated, focused research using advanced medical technologies" to research severe ME, had its processing charges funded by The ME Association.

An Overview of Severe Myalgic Encephalomyelitis
In this article, we have reviewed the literature on severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
www.mdpi.com
January 20, 2026 at 11:11 AM
meassociation.org.uk
1/2: MPs are encouraged to join the All-Party Parliamentary Group on ME at the Annual General Meeting, taking place this week.

Please invite your local MP to join and represent the ME community's voice in Parliament!

📅 21 January
⏰ 3.00–3.45pm
📍 Room R, Portcullis House

#pwME #MECFS #APPG
IMAGE DESCRIPTION: Heading - APPG on ME: Annual General Meeting. Ask your MP to attend! Wed, 21 January, 3:00 - 3:45pm.
January 19, 2026 at 3:04 PM
meassociation.org.uk
Call or email ME Connect for free, confidential support, information, and signposting. 

0808 801 0484 
meconnect@meassociation.org.uk 

Open:
Monday to Friday: 10 am - 6 pm
Thursday: Late night until 9pm
Saturdays: 10 am - 12 noon

#pwME #MECFS #MyalgicEncephalomyelitis #LongCovid
IMAGE DESCRIPTION: Photo of a young woman in bed, with her head in her hands, looking distressed. Next to her is a large mobile phone, and on the screen is a pixelated woman who has her hand outstretched in comfort. The screen also shows that the phone is currently on a call to ME Connect. Wording reads: ME Connect: the support line for people affected by ME/CFS and Long Covid. MEA logo.
January 16, 2026 at 11:10 AM
meassociation.org.uk
Join our online community, ME Connected, & meet over 700 people who understand what you're experiencing as someone affected by ME/CFS & Long Covid - whether you're a pwME, carer, family member, or friend, you are welcome in our supportive & friendly space. 

#pwME #MECFS #LongCovid
IMAGE DESCRIPTION: Graphic of a woman coming out of a phone, comforting another woman who is sat on the floor lookin sad. Wording reads: An online community of 700+ people who understand what you're going through. ME Connected logo. MEA logo.
January 14, 2026 at 3:31 PM
meassociation.org.uk
A free information sheet on Vitamin D deficiency and ME/CFS - particularly why people with ME/CFS may be at an increased risk of developing the deficiency, and how it can be treated. https://meassociation.org.uk/literature/items/vitamin-d-deficiency/

#pwME #MECFS #LongCovid
IMAGE DESCRIPTION: Photo of the MEA information sheet on Vitamin D deficiency and ME/CFS, on top of a photo of a hand holding some supplements in the sun. Wording reads: Information Sheet: Vitamin D Deficiency and ME/CFS. Download now. MEA logo.
January 14, 2026 at 2:31 PM