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ME Association

@MEAssociation

We raise funds for medical research into ME/CFS and provide support, information & campaign for people in the UK. RPs do not necessarily mean endorsement.

 Gawcott, Bucks, for all UK
linktr.ee/meassociation
Joined December 2009
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Now Recruiting: The Rosetta Stone study at Imperial College, London! The team, led by Professor Danny Altmann and Professor Rosemary Boyton, are hoping to uncover biomarkers, mechanisms, diagnostic tools, and future therapeutic pathways, and are now recruiting participants among people with ME/CFS, Long Covid and Healthy Controls. If you are interested in taking part, please read the full blog for the eligibility criteria and to express your interest: meassociation.org.uk/9be1 #MECFS #LongCovid #pwME
IMAGE DESCRIPTION: Photo of Professor Danny Altmann stood in front of a purple MEA banner. Heading: "Now Recruiting: The Rosetta Stone study at Imperial College, London!" Logos: Ramsay Research Fund, ME Association, Rosetta Stone

ALT IMAGE DESCRIPTION: Photo of Professor Danny Altmann stood in front of a purple MEA banner. Heading: "Now Recruiting: The Rosetta Stone study at Imperial College, London!" Logos: Ramsay Research Fund, ME Association, Rosetta Stone

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A Canadian clinical trial, funded in part by the MEA Ramsay Research Fund, has found that low-dose naltrexone (LDN) was safe and generally well tolerated but did not work better than placebo for people with post-Covid fatigue syndrome.   In this study, post-Covid fatigue syndrome was defined by the 2015 Institute of Medicine ME/CFS criteria, but with symptoms lasting for at least three months after a Covid-19 infection.  Read more: meassociation.org.uk/5aga #MECFS #pwME #LongCovid #Research #LDN #RamsayResearchFund
IMAGE DESCRIPTION: Photo of Dr Luis Nacul, photo of medications on a table. Graphics: ME Association logo, Ramsay Research Fund logo

ALT IMAGE DESCRIPTION: Photo of Dr Luis Nacul, photo of medications on a table. Graphics: ME Association logo, Ramsay Research Fund logo

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Olympic sprinter, Beth Dobbin, who now has severe ME post a Covid infection and glandular fever (mono) wrote to the Prime Minister, Andy Burnham, to highlight issues surrounding this disease and call for more research to be funded. ForwardME and @ThereForME_UK have put together a template letter which you can use to write to your MP, asking them to support @BethDobbin's call for greater research funding. Template letter: docs.google.com/document/d/1… Find your local MPs contact details by searching here: members.parliament.uk/member… N.B. The MEA are a part of ForwardME #MECFS #MyalgicEncephalomyelitis #BethDobbin #AndyBurnham #PrimeMinister
IMAGE DESCRIPTION: Photo of the Houses of Parliament. Graphic of a megaphone, with the heading "Write to your MP!" Wording: "Ask them to support Beth Dobbin's call for greater funding for ME/CFS research!" Logos: ME Association

ALT IMAGE DESCRIPTION: Photo of the Houses of Parliament. Graphic of a megaphone, with the heading "Write to your MP!" Wording: "Ask them to support Beth Dobbin's call for greater funding for ME/CFS research!" Logos: ME Association

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Over the past six months, the @mecfsbiobank  has distributed more than 1,300 biological samples to research groups across the world, supporting a diverse range of studies aimed at improving our understanding of ME/CFS.  Find out where these samples have ended up on the blog: meassociation.org.uk/9olc #MECFS
IMAGE DESCRIPTION: Graphic with a map showing the different places samples have been sent to, including UK, Australia, Amsterdam, America, and more. Heading: "UK ME/CFS biobank is sending over 1300 samples around the world" Logos: CureME and ME Association

ALT IMAGE DESCRIPTION: Graphic with a map showing the different places samples have been sent to, including UK, Australia, Amsterdam, America, and more. Heading: "UK ME/CFS biobank is sending over 1300 samples around the world" Logos: CureME and ME Association

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ME Association retweeted
Carers UK (@CarersUK) profile picture
Carers UK@CarersUKOct 27
6 in 10 carers who faced issues working while claiming Carer’s Allowance said it affected their ability to work. 4 in 10 said they’d left work because of it. Removing the earnings limit cliff edge is a major breakthrough after years of campaigning. carersuk.pulse.ly/fthpzqix1u
An image with a solid bright red background featuring white text. At the top, the words "BREAKING NEWS" are written in a bold, spaced-out sans-serif font. Below this, in a larger, bold font, is the headline: "Earnings cliff edge in Carer's Allowance to be scrapped". In the bottom right corner is the white logo for "carers uk", which includes an icon of three stylized, interlocking figures.

ALT An image with a solid bright red background featuring white text. At the top, the words "BREAKING NEWS" are written in a bold, spaced-out sans-serif font. Below this, in a larger, bold font, is the headline: "Earnings cliff edge in Carer's Allowance to be scrapped". In the bottom right corner is the white logo for "carers uk", which includes an icon of three stylized, interlocking figures.

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Buy your ME Association Christmas Cards today (Free UK Delivery) Choose from 3 lovely designs - £4.50 for a pack of 10 The wording inside the card reads: ‘Season’s Greetings and Best Wishes for the New Year’. 6 inches x 6 inches (15cm x 15cm) meassociation.org.uk/product…  #MECFS #LongCovid #MEAssociation #ChristmasCards #CharityChristmasCards
IMAGE DESCRIPTION: Graphic with three christmas cards, one of the three wise men, one of a reindeer, and one of a christmas village. Heading: "Get you ME Association Christmas Cards 2026!" ME Association logo

ALT IMAGE DESCRIPTION: Graphic with three christmas cards, one of the three wise men, one of a reindeer, and one of a christmas village. Heading: "Get you ME Association Christmas Cards 2026!" ME Association logo

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Update: ME Association investment in @mecfsbiobank exceeds £1M Read the latest updates and minutes from the UK ME/CFS Biobank Steering Group's September meeting, chaired by Dr Charles Shepherd, MEA Hon Medical Adviser. meassociation.org.uk/1r3l #MECFS
Update: ME Association investment in UK ME/CFS Biobank exceeds £1M - The ME Association

Update: ME Association investment in UK ME/CFS Biobank exceeds £1M - The ME Association

Read the latest updates from the UK ME/CFS Biobank Steering Group meeting, September 2026.

meassociation.org.uk
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Reminder - Clocks change tonight! British Summer Time (BST), also known as Daylight Saving Time (DST), will come to an end this weekend as the clocks go back an hour.  This change will happen on Sunday 25 October at 02:00 BST, and will mean everyone gains an extra hour. "Sunset will move forward an hour as well and initially you may notice the sun coming up earlier too." Read more: bbc.co.uk/weather/articles/c… #MECFS #pwME #LongCovid
IMAGE DESCRIPTION: Photo of a small alarm clock with the headline: "Reminder: Clocks go backwards on Sunday 25th October"

ALT IMAGE DESCRIPTION: Photo of a small alarm clock with the headline: "Reminder: Clocks go backwards on Sunday 25th October"

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1/3 October is Dysautonomia Awareness Month. In 2025, we shared an A to Z of common symptoms, experiences, and comorbidities of ME/CFS. P is for Postural Orthostatic Tachycardia Syndrome (PoTS).
IMAGE DESCRIPTION: P is for Postural Orthostatic Tachycardia Syndrome (PoTS). With the ME Association logo.

ALT IMAGE DESCRIPTION: P is for Postural Orthostatic Tachycardia Syndrome (PoTS). With the ME Association logo.

IMAGE DESCRIPTION: P is for Postural Orthostatic Tachycardia Syndrome (PoTS). PoTS is a fairly common comorbidity of ME/CFS, especially in younger age groups.The key symptom is a significant rise in heart rate (tachycardia) upon sitting or standing from a reclined position. With the ME Association Logo

ALT IMAGE DESCRIPTION: P is for Postural Orthostatic Tachycardia Syndrome (PoTS). PoTS is a fairly common comorbidity of ME/CFS, especially in younger age groups.The key symptom is a significant rise in heart rate (tachycardia) upon sitting or standing from a reclined position. With the ME Association Logo

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2/3 PoTS is a fairly common comorbidity of ME/CFS, especially in younger age groups. The key symptom is a significant rise in heart rate (tachycardia) upon sitting or standing from a reclined position. To understand more about PoTS, download our free booklet: meassociation.org.uk/snck
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3/3 For those who may have missed the full A to Z of ME/CFS, all links can be found here: meassociation.org.uk/a2zME #MECFS #LongCovid #PoTS #DysautonomiaAwarenessMonth
MEA.AtoZ | Linktree

MEA.AtoZ | Linktree

An A-Z of common symptoms, experiences, and comorbidities of ME/CFS

linktr.ee
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ME Association retweeted
Beth Dobbin (@BethDobbin) profile picture
Beth Dobbin
@BethDobbinOct 23
BBC Sport approached @number10gov for a response to my letter to @andyburnham . The @DHSCgovuk responded and unfortunately this statement isn’t anything we didn’t already know. There are also fundamental inaccuracies within it. Please also bear with me; I’ve had an extremely large amount of messages and I’m operating with a very limited capacity. @Ed_Miliband @tessamunt @JoPlattLeigh @KatieFalkingham @BBCSport @BBCNews @UKLabour @ThereForME_UK @YvetteCooperMP
Image from Beth Dobbin (@BethDobbin)
Image from Beth Dobbin (@BethDobbin)
Image from Beth Dobbin (@BethDobbin)
Image from Beth Dobbin (@BethDobbin)
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Research: The controversial microclot theory and the use of anticoagulant medication to treat Long Covid Dr Charles Shepherd comments: "This is an important new research study from Oxford which casts further doubt on the idea that small blood clots – microclots – are involved in the causation of Long Covid..." Read more on the blog: meassociation.org.uk/dszo #LongCovid
Research: The controversial microclot theory and the use of anticoagulant medication to treat Long...

Research: The controversial microclot theory and the use of anticoagulant medication to treat Long...

Research finds no evidence supporting the microclot theory of Long Covid or the use of blood thinners. Read more here

meassociation.org.uk
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Yvette and Andrew Jackson were interviewed at their farm by ITV Border News, where they talked about the impact ME/CFS has had on their lives, and Yvettes new appointment joining the UK ME/CFS Biobank. Their segment aired on the 22nd of October, and included an interview with Dr Charles Shepherd, MEA Hon Medical Adviser. Watch the segment on the blog! Timestamp 05:30 – 09:30. meassociation.org.uk/c17b #MECFS #pwME #MyalgicE #MECFSBiobank #CureME
IMAGE DESCRIPTION: Photo of Yvette and Andrew in a sunny holiday photo. Heading: "Yvette and Andrew Jackson interviewed about new ME/CFS Biobank appointment on ITV Border News" Logos: ME Association, Cure ME

ALT IMAGE DESCRIPTION: Photo of Yvette and Andrew in a sunny holiday photo. Heading: "Yvette and Andrew Jackson interviewed about new ME/CFS Biobank appointment on ITV Border News" Logos: ME Association, Cure ME

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Dr Charles Shepherd was interviewed as part of a Daily Mail article, and we share on the blog some notes on the key points Dr Shepherd made during the interviewabout the supplement Oxaloacetate which you may find useful. Read more: meassociation.org.uk/uzne #MECFS
IMAGE DESCRIPTION: Photo of a handful of supplements, and a photo of Dr Charles Shepherd. Heading: "The Daily Mail interviews Dr Charles Shepherd about supplement for brain fog and fatigue" ME Association logo

ALT IMAGE DESCRIPTION: Photo of a handful of supplements, and a photo of Dr Charles Shepherd. Heading: "The Daily Mail interviews Dr Charles Shepherd about supplement for brain fog and fatigue" ME Association logo

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Daily Mail article (PAYWALLED): dailymail.com/health/article…
The 'chemo brain' supplement that could beat brain fog and fatigue

The 'chemo brain' supplement that could beat brain fog and fatigue

It's the problem that cripples focus, memory and speech - and makes its sufferers feel like they're awash with fatigue. Around one in three Britons are said to experience brain fog.

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1/2 PRIME Symposium: Professor Danny Altmann Q&A Professor Danny Altmann discusses the latest Long Covid research, why scientists must “do better”, and why ME/CFS and Long Covid should be studied together. He also explains the importance of the Rosetta Stone study, backed by the ME Association’s largest-ever grant of £1.175M to Imperial College.
IMAGE DESCRIPTION: A group of people watching a presentation. Wording: PRIME symposium: Professor Danny Altmann Q&A. With the ME Association Logo (bottom right)

ALT IMAGE DESCRIPTION: A group of people watching a presentation. Wording: PRIME symposium: Professor Danny Altmann Q&A. With the ME Association Logo (bottom right)

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2/2 An update on recruitment, ethical approval and Public Advisory Group opportunities is coming before the end of the year. Watch on YouTube: youtube.com/watch?v=PmJ-Lkm-… More info: meassociation.org.uk/vzfy/ #MECFS #MyalgicEncephalomyelitis #LongCovid #RamsayResearchFund #RosettaStone
Day 2 – Danny Altmann – Rosetta Stone

Day 2 – Danny Altmann – Rosetta Stone

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

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65 days until Christmas! Buy your ME Association Christmas Cards today (Free UK Delivery) Choose from 3 lovely designs - £4.50 for a pack of 10 The wording inside the card reads: ‘Season’s Greetings and Best Wishes for the New Year’. 6 inches x 6 inches (15cm x 15cm) meassociation.org.uk/product… #MECFS #LongCovid #MEAssociation #ChristmasCards #CharityChristmasCards
IMAGE DESCRIPTION: A festive background with a the charity Christmas card - Trinket Tree - in the forefront. With the ME Association Logo.

ALT IMAGE DESCRIPTION: A festive background with a the charity Christmas card - Trinket Tree - in the forefront. With the ME Association Logo.

IMAGE DESCRIPTION: A festive background with a the charity Christmas card - Three Kings - in the forefront. With the ME Association Logo.

ALT IMAGE DESCRIPTION: A festive background with a the charity Christmas card - Three Kings - in the forefront. With the ME Association Logo.

IMAGE DESCRIPTION: A festive background with a the charity Christmas card - Never Alone (Deer and Robins) - in the forefront. With the ME Association Logo.

ALT IMAGE DESCRIPTION: A festive background with a the charity Christmas card - Never Alone (Deer and Robins) - in the forefront. With the ME Association Logo.

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ME Association retweeted
Beth Dobbin (@BethDobbin) profile picture
Beth Dobbin
@BethDobbinOct 21
We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense. We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government. As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed. I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️ Thanks to @ThereForME_UK and @wecrunchme for the stats.
Image from Beth Dobbin (@BethDobbin)
Image from Beth Dobbin (@BethDobbin)
Image from Beth Dobbin (@BethDobbin)
Image from Beth Dobbin (@BethDobbin)
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