@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
  • Tweets34.2K
  • Following1.7K
  • Followers19K
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ME Connect is our free, confidential support service offering a safe, understanding space where you're truly listened to. Whether you need someone to talk to, emotional support or simply a compassionate ear, we're here for you. Get in touch today: 0808 801 0484 [email protected] Opening hours: Monday-Friday: 10am-5pm Thursday: late night until 9pm Saturday: 10am-12noon #MECFS #pwME #LongCovid
IMAGE DESCRIPTION: Man lying down on a sofa holding a phone in his hand. The phone is on a call screen, saying he is calling ME Connect. Wording reads: ME Connect. We're here for you.

ALT IMAGE DESCRIPTION: Man lying down on a sofa holding a phone in his hand. The phone is on a call screen, saying he is calling ME Connect. Wording reads: ME Connect. We're here for you.

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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

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

linktr.ee
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ME Association retweeted
Beth Dobbin
@BethDobbin15h
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
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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 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

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.

dailymail.com
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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

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
@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.
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Sharing for information: Independent: Dr Amir Khan explains Miranda Hart’s ME symptoms as Celebrity Traitors star reveals impact of chronic illness N.B. The ME Association are not recommending that people with ME/CFS should undertake this sort of quite strenuous physical exercise until they have had a sustained period of good health that is consistent with improvement/recovery. Also, to note, tiredness doesn't explain the profound fatigue experienced by people with ME/CFS.  "Doctor Amir Khan explained more about the condition during ITV’s Lorraine show on Tuesday (20 October). He said: “ME is a chronic, serous condition that affects lots of parts of the body, including tiredness, the immune system, the brain function. It is really widespread." independent.co.uk/tv/culture… #MECFS #MyalgicEncephalomyelitis #LongCovid #CelebrityTraitors #MirandaHart #DoctorAmirKhan #Lorraine #ITV

Doctor explains Miranda Hart’s symptoms as star reveals impact of chronic illness

Celebrity Traitors star Miranda Hart recently opened up about her chronic health battle, admitting she feared she would never enjoy a gentle walk again. The comedian was diagnosed with ME (Myalgic...

independent.co.uk
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We pleased to announce the appointment of Yvette Jackson to the Biobank CureME Steering Group. The @mecfsbiobank, the first of its kind in Europe, is an open worldwide resource for clinical and biomedical research into ME/CFS.  Read more: meassociation.org.uk/c17b #MECFS #MyalgicEncephalomyelitis

New appointment on the UK ME/CFS Biobank Steering Group strengthens carer voice - The ME Association

Yvette Jackson, who is a carer for her husband with ME/CFS and advocate, has joined the UK ME/CFS Biobank Steering Group, funded by the MEA

meassociation.org.uk
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Dr Charles Shepherd and Beth Dobbin, Olympic sprinter, interviewed on BBC Radio Sheffield Dr Charles Shepherd and Olympic sprinter, Beth Dobbin who now has severe ME, were interviewed by BBC Radio Sheffield live on air on the 19th October. MEA blog: meassociation.org.uk/lgez The interview starts at around 2.11.40 - (break 2.21.00 -2.25.40) - then continues at 2.35.50 on Paulette Edwards show bbc.co.uk/sounds/play/m0032r… #MECFS #MyalgicEncephalomyelitis #BethDobbin #BBCSportNews
IMAGE DESCRIPTION: Photo of Dr Charles Shepherd, and a photo of a radio recording booth. Heading: "Dr Charles Shepherd and Beth Dobbin, Olympic sprinter, interviewed on BBC Radio Sheffield" Logos: ME Association

ALT IMAGE DESCRIPTION: Photo of Dr Charles Shepherd, and a photo of a radio recording booth. Heading: "Dr Charles Shepherd and Beth Dobbin, Olympic sprinter, interviewed on BBC Radio Sheffield" Logos: ME Association

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1/2 Parliamentary Questions (PQs) on ME/CFS & Long Covid: Aug/Sept 2026 We've listed all the parliamentary questions asked during this period in the following link: linktr.ee/MECFSLC.Parliament…
IMAGE DESCRIPTION: An image of the Houses of Parliament with the wording: Parliamentary Questions: ME/CFS & LC Aug/Sept 2026

ALT IMAGE DESCRIPTION: An image of the Houses of Parliament with the wording: Parliamentary Questions: ME/CFS & LC Aug/Sept 2026

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2/2 that may be of interest include MP Tessa Munt (Lib Dem) - chair of the APPG on ME - asked questions on SNOMED-CT Coding & the Government's Final Delivery Plan on ME/CFS plus MP Max Wilkinson (Lib Dem) asked about research: Sequence ME for Long Covid & ME/CFS. #MECFS #MyalgicEncephalomyelitis #SevereME #UKParliament #Sept2026
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OMEGA Event: Latest ME/CFS Research from Professor Karl Morten and colleagues! Tickets: eventbrite.co.uk/e/latest-me… #MECFS #pwME #MyalgicE #Research

Latest ME Research from Professor Karl Morten and colleagues

Join Prof Karl Morten and colleagues in person or online to catch the freshest insights on ME research and breakthroughs!

eventbrite.co.uk
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**Trigger Warning: Some may find this content upsetting**  The Olympic sprinter now bedbound for 22 hours a day  "Dobbin has been diagnosed with ME, or myalgic encephalomyelitis - a chronic, fluctuating disease, causing symptoms such as sleep problems, problems with thinking and memory, pain and severe, persistent fatigue that does not improve with rest, and more. A conversation, or even something so simple as a light too bright or a sound too loud, can cause a "crash" that lasts 24, 48 hours, or in the worst cases, months on end. This year, Dobbin has left the house on just five occasions. "It's life-decimating like I can't even put into words," she says. "I feel like I've lost everything."  Read more: bbc.co.uk/sport/athletics/ar…  #MECFS #pwME #MyalgicEncephalomylitis #MyalgicEncephalopathy
IMAGE DESCRIPTION: Photo of a bed in a dark room. Wording reads: BBC Sport: The Olympic Sprinter now bedbound for 22 hours a day. MEA logo.

ALT IMAGE DESCRIPTION: Photo of a bed in a dark room. Wording reads: BBC Sport: The Olympic Sprinter now bedbound for 22 hours a day. MEA logo.

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1/3 Scientific Reports: Handgrip strength parameters as predictors of post-COVID syndrome severity and muscle weakness in an observational study nature.com/articles/s41598-0…
IMAGE DESCRIPTION: An image of a person using a HGS measuring device. Title: Scientific Reports: Handgrip strength parameters as predictors of post-COVID syndrome severity and muscle weakness in an observational study. The ME Association Logo (bottom right)

ALT IMAGE DESCRIPTION: An image of a person using a HGS measuring device. Title: Scientific Reports: Handgrip strength parameters as predictors of post-COVID syndrome severity and muscle weakness in an observational study. The ME Association Logo (bottom right)

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2/3 Further studies and information on HGS below: Springer Nature: Handgrip strength in children, adolescents, and young adults with suspected myalgic encephalomyelitis/chronic fatigue syndrome link.springer.com/article/10…

Handgrip strength in children, adolescents, and young adults with suspected myalgic encephalomyel...

Journal of Translational Medicine - Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in children and young people (CYP) lacks validated diagnostic biomarkers. Post-exertional malaise...

link.springer.com
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3/3 The ME Association also has a medical matters entry on HGS: meassociation.org.uk/medical… #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #PostCovid #HandGripStrength

Investigations: Hand Grip Strength - The ME Association

I was interested to read about the new research from the ME Biobank that looked at hand grip strength in people with ME. As this appears to be a good predictor of both loss of muscle strength and...

meassociation.org.uk
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