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ME Association

@meassociation.org.uk
928 followers 143 following 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. linktr.ee/meassociation

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ME Association @meassociation.org.uk · 02/10/2026
An article looking at conditions such as "fibromyalgia, long COVID, endometriosis, chronic fatigue syndrome, and autoimmune disorders, [which] put patients at high risk of experiencing “medical gaslighting”"
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ME Association @meassociation.org.uk · 02/10/2026
The American Psychological Association: The hidden harms of medical gaslighting   Read more: www.apa.org/monitor/2026/10/harms-m…  #pwME #MECFS #LongCovid #Fibromyalgia #Endometriosis #MedicalGaslighting
IMAGE DESCRIPTION: Photo of a woman sat in bed, with her head in her hands. 
Wording reads: The American Psychological Association: The hidden harm of medical gaslighting. 
MEA logo.
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ME Association @meassociation.org.uk · 02/10/2026
The Guardian Letters: Specialist services are vital to help people with ME/CFS  "Readers respond to George Monbiot’s article about how those with myalgic encephalomyelitis, or chronic fatigue syndrome, have been failed by the health system"  Read: tinyurl.com/4vryfy2m  #pwME #MECFS
IMAGE DESCRIPTION: Photo of a hand writing a letter. 
Wording reads: The Guardian Letters: Specialist services are vital to help people with ME/CFS. 
MEA logo.
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ME Association @meassociation.org.uk · 30/09/2026
ME Association Christmas cards have arrived!  Choose from 3 lovely designs and get your 2026 Christmas cards today - £4.50 for a pack of 10, with free UK delivery! meassociation.org.uk/product/christ…  #pwME #MECFS #MEAssociation #ChristmasCards #CharityChristmasCards
IMAGE DESCRIPTION: Photo of a Christmas card featuring 3 wise men following a star.IMAGE DESCRIPTION: Photo of a Christmas card featuring a village scene and a Christmas tree.IMAGE DESCRIPTION: Photo of a Christmas card featuring a deer with mistletoe in its antlers and robins flying around.
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ME Association @meassociation.org.uk · 30/09/2026
A review of the current situation regarding gastrointestinal symptoms in Long Covid – especially in relation to factors involved in the causation of persistent diarrhoea & the management options that are available.
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ME Association @meassociation.org.uk · 30/09/2026
Post-COVID Gastrointestinal Symptoms and Disorders of Gut-Brain Interaction: A Focus on Persistent Diarrhea Read more, and Dr Shepherd's comments: meassociation.org.uk/glbn  #LongCovid #PostCovid
IMAGE DESCRIPTION: Photo of a man sat on the toilet, holding his stomach in pain, and a roll of toilet paper. 
MEA logo. 
Wording reads: Post-COVID Gastrointestinal Symptoms and Disorders of Gut-Brain Interaction: A Focus on Persistent Diarrhea
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ME Association @meassociation.org.uk · 30/09/2026
The UK ME/CFS Biobank have shared updates about their latest work in their newsletter: us7.campaign-archive.com/?u=d5cd5b5… #MECFS #pwME #MyalgicE #MECFSBiobank
IMAGE DESCRIPTION: Photo of blood samples. Heading: UK ME/CFS Biobank Newsletter Update. Logos: ME Association, London School of Hygiene and Tropical Medicine, Cure ME.
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ME Association @meassociation.org.uk · 30/09/2026
2/2: PLEASE NOTE: In the interview, Dr S does not refer to CFS when talking to journalists and always refers to ME/CFS or ME. He was not given the opportunity to check the copy here before it was published.
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ME Association @meassociation.org.uk · 30/09/2026
1/2: Daily Mail Online: The cause of your chronic and severe fatigue: Scientists studied the make-up of people with the illness... and now think they've found the genetic traits to blame [PAYWALLED] Full article: tinyurl.com/2vkvhrvv #MECFS #pwME #MyalgicE #Research
IMAGE DESCRIPTION: Photo of a scientist looking through a microscope. Photo of Dr Charles Shepherd. 
Heading: "Daily Mail Online share article about recent ME/CFS Research, with comment from Dr Charles Shepherd"
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ME Association @meassociation.org.uk · 29/09/2026
Bioengineer: Lupus Patients With Stubborn Symptoms May Resemble ME/CFS, New Framework Suggests Read more: meassociation.org.uk/q03z #MECFS
meassociation.org.uk
Bioengineer: Lupus Patients With Stubborn Symptoms May Resemble ME/CFS, New Framework Suggests - The ME Association
A new research paper proposes a subtype of Lupus patients with ME/CFS like characteristics. Dr Charles Shepherd provides comment.
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ME Association @meassociation.org.uk · 29/09/2026
Live in Wales? Want to know what new Welsh Gov-funded ME & Long Covid services offer locally? Join ME Voices Wales’ webinar, Fri 2 Oct, 12.30–1.30pm. Swansea Bay UHB’s team will present and answer questions. All Wales welcome! Register: tinyurl.com/2rz2cupc @wamesmecfs.bsky.social #pwME
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ME Association @meassociation.org.uk · 28/09/2026
Search the free information database Medical Matters here:      
meassociation.org.uk
Medical Matters - The ME Association
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ME Association @meassociation.org.uk · 28/09/2026
Medical Matters: Sleep Apnoea Q: What are the symptoms of Sleep Apnoea, does it have any similarities to ME/CFS, and how might it be treated? A: meassociation.org.uk/medical-matter… #pwME #MECFS #Sleep
IMAGE DESCRIPTION: Photo of Dr Charles Shepherd with the following text: "What are the symptoms of Sleep Apnoea, does it have any similarities to ME/CFS, and how might it be treated? Please click the link to read the answer in the Medical Matters database"
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ME Association @meassociation.org.uk · 28/09/2026
British Psychological Society ME/CFS Guidelines: September 2026 Update "We have been carrying out further analysis of the responses to our survey about what people with ME/CFS want psychologists to know..." Read the full update: meassociation.org.uk/t2tu #MECFS
meassociation.org.uk
British Psychological Society ME/CFS Guidelines: September 2026 Update - The ME Association
Read the September 2026 update on the British Psychological Society (BPS) ME/CFS Guidelines
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ME Association @meassociation.org.uk · 28/09/2026
📢 Help shape the future of care for ME/CFS and Long Covid! The HERITAGE study is looking for people with lived experience of ME/CFS and Long Covid to take part in our study! Get involved:  🔗 heritage.leeds.ac.uk/join #MECFS #LongCOVID #Research #PatientVoice #HealthcareResearch
Poster for the HERITAGE Study with the following text:
HERITAGE:
Health Effects from Infection Sequelae: Tailoring serves and Advancing Guidance
Why is HERITAGE needed?
Care for Long COVID and ME/CFS varies across the NHS.
HERITAGE will explore:
What services are provided. 
What people experience. 
What works.
What needs to change.
Your experiences can help inform the future of Long COVID and ME/CFS care.
Join the HERITAGE study
https://heritage.leeds.ac.uk/join/

QR Code: Right
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ME Association @meassociation.org.uk · 26/09/2026
Background - The Guardian: Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed: www.theguardian.com/commentisfree/2…  #MyalgicEncephalomyelitis #GeorgeMonbiot
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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ME Association @meassociation.org.uk · 26/09/2026
#NatashaDevon shared on social media that she'll cover The Guardian article ME/CFS on the LBC radio programme on Saturday evening (6pm-9pm) and will be joined by the author George Monbiot. Listen here: www.globalplayer.com/catchup/lbc/uk… #MECFS #LBCRadio
IMAGE DESCRIPTION: An image of a radio studio with a microphone and a circular image of George Monbiot. Title: Natasha Devon set to interview George Monbiot on LBC radio this evening. With the ME Association logo.
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ME Association @meassociation.org.uk · 25/09/2026
Research Update: MEA Clinical Assessment Toolkit (MEA‑CAT) – Stage II The MEA‑CAT was originally developed for clinicians working in specialist ME/CFS services, helping them assess and monitor patients more effectively. meassociation.org.uk/yyze
meassociation.org.uk
Research Update: MEA Clinical Assessment Toolkit (MEA‑CAT) – Stage II - The ME Association
Explore the MEA-CAT, a co-produced ME/CFS assessment toolkit with the ME Association. Learn more about stage II of the project.
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ME Association @meassociation.org.uk · 24/09/2026
A massive thank you to all those who ran for us in The Great North Run and raised a whopping £11,155 so far! This will make a big difference in the lives of people with ME/CFS.  #ThankYouThursday #ThankYou #GreatNorthRun #pwME #MECFS
IMAGE DESCRIPTION: Photos of the people who ran on behalf of the ME Association at The Great North Run. Wording reads: Thank you so much!
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ME Association @meassociation.org.uk · 24/09/2026
We would like to thank George Monbiot for writing this piece & highlighting the issues affecting millions in the UK with ME/CFS. George Monbiot will be discussing the article on Natasha Devon's radio show on Saturday:
bsky.app
Natasha Devon (@natashadevon.bsky.social)
George will be coming on my show this weekend to discuss this very important article. [contains quote post or other embedded content]
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ME Association @meassociation.org.uk · 24/09/2026
The Guardian: Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed "Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors" tinyurl.com/mr3p63ve
IMAGE DESCRIPTION: Photo of a woman lying in bed in a dark room, wearing an eye mask. Wording reads: The Guardian: Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed.
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ME Association @meassociation.org.uk · 24/09/2026
Research: Spotlight on Aleyna: The PhD Researcher Using Cutting‑Edge Technology to Uncover New Clues in ME/CFS Dr Katrina Pears, MEA Research Coordinator has interviewed Aleyna Lumsden, PhD researcher jointly based at Rosalind Franklin Institute & University of Oxford. meassociation.org.uk/ryww
meassociation.org.uk
Research: Spotlight on Aleyna: The PhD Researcher Using Cutting‑Edge Technology to Uncover New Clues in ME/CFS - The ME Association
Metabolomics research is looking to uncover new clues into ME/CFS. Watch Dr Katrina Pears interview PhD researcher Aleyna Lumsden on YouTube.
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ME Association @meassociation.org.uk · 24/09/2026
Research: DISCOVER-ME BBC Radio Norfolk speaks to Prof Simon Carding about DISCOVER-ME – a new multi site European ME/CFS research project. The UK ME/CFS Biobank, which is funded by the MEA Ramsay Research Fund, will be supplying blood samples for this research … meassociation.org.uk/chxj
IMAGE DESCRIPTION: A circular image of samples. With the UK ME/CFS Biobank and ME Association Logos
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ME Association @meassociation.org.uk · 23/09/2026
2/2: The next round of volunteer training will take place week beginning the 5th October, so please apply by the end of this week (27th September), interviews taking place next week. Find out more on our website: tinyurl.com/5bt8afap Or by emailing: katharine.leat@meassociation.org.uk
tinyurl.com
ME Connect Support - The ME Association
Support and information for people with ME, CFS or Long COVID, and their families and carers. Contact us by phoneline, email or Discord.
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ME Association @meassociation.org.uk · 23/09/2026
1/2: Final call for this round of new volunteers - apply by 27th September! ME Connect is our frontline support service, offering support to people with ME/CFS over the phone and via email. If you have empathy and understanding for those living with ME/CFS, we would love to hear from you. #MECFS
IMAGE DESCRIPTION: Photo of two people holding hands in support. Heading: "Could you volunteer with our ME Connect Support Line?"
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ME Association @meassociation.org.uk · 22/09/2026
2/2: The ME Association have supported this open letter by signing separately as an organisation, and we are also a member of Forward ME.
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ME Association @meassociation.org.uk · 22/09/2026
1/2: The Overlapping Illness Alliance has written to The Telegraph in response to their article, How having a disability became cool, published on 5 September 2026. Read the letter: www.overlappingillnessalliance.org.… #MECFS
overlappingillnessalliance.org.uk
Resources
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ME Association @meassociation.org.uk · 22/09/2026
Ready for a challenge? Take on the London Landmarks Half Marathon, Sunday 4th April 2027, and raise vital funds to support people with ME/CFS! Email fundraising@meassociation.org.uk for more information and for your chance to join team MEA! #MECFS #Fundraising #LLHM2027
IMAGE DESCRIPTION: Photo of people running. Wording: "Ready for a challenge? Take on the London Landmarks Half Marathon for the MEA in 2027!" 
Logos: ME Association, LLHM logos
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ME Association @meassociation.org.uk · 21/09/2026
Not sure whether you need a Will, or whether the one you wrote years ago still fits your life?  Our partners at Octopus Legacy have a free one-minute quiz to help you work out how prepared you are and what, if anything, you might need to do next.  Quiz: meassociation.org.uk/2hd8 #MECFS
IMAGE DESCRIPTION: "Change starts with a will. A gift in your Will supports people with ME today and funds research that could transform lives for generations to come. Write or update your will for free today."
Logos: ME Association, Octopus Legacies.
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Reposted by ME Association
George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.
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ME Association @meassociation.org.uk · 21/09/2026
ME Connect is open as usual, more info here:
meassociation.org.uk
ME Connect Support - The ME Association
Support and information for people with ME, CFS or Long COVID, and their families and carers. Contact us by phoneline, email or Discord.
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ME Association @meassociation.org.uk · 21/09/2026
Notice: Please note, due to unforeseen circumstances, our Head Office is temporarily understaffed. If your call is non-urgent we would appreciate you waiting to call till the end of the week. #MEAssociation #Membership #MEConnect #MECFS
IMAGE DESCRIPTION: Graphic of come papers pinned up, with the following notice on them: "Head Office is short-handed. Our MEA Head Office is temporarily understaffed, so if your call is non-urgent we would appreciate you waiting to call till the end of the week.

ME Connect is open as usual."
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ME Association @meassociation.org.uk · 18/09/2026
2/2 Did you know you can see the MEA's latest Facebook and Instagram posts without needing a social media account, via the live Social Media Wall on our website: meassociation.org.uk/smww #MECFS #LongCovid #MEAssociation
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ME Association @meassociation.org.uk · 18/09/2026
1/2 Please follow us on socials Following our social media channels is the easiest way to keep up-to-date with all the latest ME/CFS and Long Covid news, research announcements and charity updates Click here to find all our social URLs: linktr.ee/measocials
IMAGE DESCRIPTION: A follow us on social media image with the ME Association's logo and icons of socials.
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ME Association @meassociation.org.uk · 18/09/2026
When you shop online with @easyfundraising.bsky.social a percentage of your purchase is donated to The ME Association at no extra cost to you. If you are already signed up, thank you! And if you'd like to support the MEA, you can sign up here: meassociation.org.uk/easyf
easyfundraising.org.uk
You shop. Your cause gets money. For free.
Join 2.4m people raising free donations via 8,000+ shops & sites.
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ME Association @meassociation.org.uk · 17/09/2026
3/3 Search the free information database Medical Matters here: meassociation.org.uk/medm #MECFS #Hypergraphia #CognitiveDysfunction
meassociation.org.uk
Medical Matters - The ME Association
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ME Association @meassociation.org.uk · 17/09/2026
2/3 A: meassociation.org.uk/medical-matt... N.B. Hypergraphia = increased use of words when writing letters/emails etc
meassociation.org.uk
Hypergraphia/increased use of words when writing letters and emails - The ME Association
That’s a very interesting question because it’s something that I […]
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ME Association @meassociation.org.uk · 17/09/2026
1/3 Medical Matters: Hypergraphia Dr Charles Shepherd and the ME Association's other advisers answer questions from members of the MEA. Q: Do you know if people with ME/CFS are more likely to experience Hypergraphia?
IMAGE DESCRIPTION: A graphic with the medical matters question: 'Do you know if people with ME/CFS are more likely to experience Hypergraphia?' and an image of Dr Charles Shepherd, MEA Hon. Medical Adviser. With the MEA Medical Matters logo.
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ME Association @meassociation.org.uk · 17/09/2026
3/3 Also, we now offer read online copies for healthcare professionals outside the UK (choosing the overseas option) via the same link. meassociation.org.uk/hcpr N.B. The NHS modules poster is available as a free download on our website: meassociation.org.uk/6k05
meassociation.org.uk
NHS e-Learning Modules Poster - The ME Association
NHS e-Learning Hub now has CPD modules on ME/CFS. This […]
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ME Association @meassociation.org.uk · 17/09/2026
2/3 If you'd like to nominate your GP to be added to the mailing list to receive the ME Association's ME Medical magazine, please complete the form via the link below. Or if you are a healthcare professional (HCP), please do feel free to add your name to the list: meassociation.org.uk/hcpr
meassociation.org.uk
Healthcare 4 ME: ME Medical - The ME Association
Sign up below to receive ME Medical, the free quarterly […]
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ME Association @meassociation.org.uk · 17/09/2026
1/3 ME Medical - The Autumn 2026 Edition has been sent out to healthcare professionals & GP surgeries on our current mailing list In this edition, we've included the NHS eLearning Poster on the back cover to point healthcare professionals towards this resource.
IMAGE DESCRIPTION: An image of a stethoscope with the ME Medical front cover and to the side the NHS Modules Poster. The ME Association Logo (bottom right)
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ME Association @meassociation.org.uk · 16/09/2026
A new research paper, published in Elsevir, has identified changes to cerebral (brain) blood flow in patients with Long Covid. Dr Charles Shepherd, MEA Hon. Medical Adviser, provides comments on the blog: meassociation.org.uk/jo9c #MECFS #pwME #LongCovid #PostCovid #Research
meassociation.org.uk
Research finds changes to cerebral blood flow in people with Long Covid - The ME Association
A new research paper, published in Elsevir has identified changes to cerebral (brain) blood flow in patients with Long Covid.
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ME Association @meassociation.org.uk · 16/09/2026
Last Friday, MEA Associate Trustee, Nicki Strong, attended a private viewing event at the Royal Opera House for the I Would Be There If I Could arts project. Find out more about the event: meassociation.org.uk/bp30 #MECFS #pwME #MyalgicE #LongCovid #IWouldBeThereIfICould #Mirrorbox
IMAGE DESCRIPTION: Photo of Nicki Strong, MEA Associate Trustee, stood in front of the Mirrorbox in the Royal Opera House foyer. Heading: "I Would Be Here If I Could: ME Association Trustee attends The Mirrorbox Journey event at the Royal Opera House"
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ME Association @meassociation.org.uk · 15/09/2026
3/3: The AGM will include:  - Voting on any resolutions to be considered  - Charity updates If you are a member of the ME Association and wish to attend, please use the link below to register by November 29th 11:59pm.
meassociation.org.uk
MEMBERS ONLY - Notice of Annual General Meeting of The ME Association and Registration - The ME Association
Find the details for how members can sign up to attend the ME Association's 2026 AGM here.
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ME Association @meassociation.org.uk · 15/09/2026
2/3: The AGM is open to all members of the ME Association, who may attend either online via ZOOM or in person at our office: 7 Apollo Office Court, Radclive Road, Gawcott, Buckinghamshire, MK18 4DF.
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ME Association @meassociation.org.uk · 15/09/2026
1/3: MEMBERS ONLY – Notice of Annual General Meeting of The ME Association and Registration The next Annual General Meeting (AGM) of The ME Association will be held on December 8th 2026, 2pm – 3pm.  meassociation.org.uk/AGM2026 #MECFS
IMAGE DESCRIPTION: Photo of wooden blocks spelling out AGM. Heading: "MEMBERS ONLY – Notice of Annual General Meeting of The ME Association and Registration"
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ME Association @meassociation.org.uk · 15/09/2026
Research: MedRXiv Preprint: Seven replicated genomic associations of ME/CFS This genome wide association study involved 1268 people with ME/CFS and healthy controls who were obtained from the UK Biobank. Read more: meassociation.org.uk/7a28 #MECFS #pwME #MyalgicE #Research
meassociation.org.uk
Research: MedRXiv Preprint: Seven replicated genomic associations of ME/CFS - The ME Association
On the 14th of September, MedRXiv published a new preprint paper. This genome wide association study involved 1268 people with ME/CFS and healthy controls who were obtained from the UK Biobank.
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ME Association @meassociation.org.uk · 14/09/2026
Attention MEA Members: The Autumn 2026 edition of the ME Essential Magazine is on its way to you! This edition also includes a copy of the NHS ME/CFS Learning Modules poster, which you can cut out & give to your local Healthcare Providers to promote medical education on ME/CFS.
IMAGE DESCRIPTION: Photo of the cover of the Autumn 2026 edition of the ME Essential magazine, and the NHS learning hub ME/CFS modules poster, surrounded by autumn leaves. 
Wording reads: ME Essential Autumn 2026 edition - coming soon...
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ME Association @meassociation.org.uk · 14/09/2026
@wamesmecfs.bsky.social (The Welsh Association for ME/CFS Support) are hosting a webinar in which Swansea Bay Health Board’s Adferiad Service will be talking about how their service can support people with ME/CFS to self-manage. Register online here: tinyurl.com/4ejcpra4
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ME Association @meassociation.org.uk · 14/09/2026
The MEA had the privilege of attending a reception for the B12 consortium at Parliament at the invite of the Pernicious Anaemia Society. Read more: meassociation.org.uk/rw9p #MECFS #pwME #LongCovid #B12
meassociation.org.uk
The MEA attended Parliament for the B12 consortium reception - The ME Association
The ME Association attended the B12 Consortium reception at Parliament.
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