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ME Association @meassociation.org.uk · 12h

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. #MEConnect #MECFS

IMAGE DESCRIPTION: Photo of a man in bed, on his phone. Wording reads: "I was so happy to talk to someone who understands the condition."
MEA and ME Connect logos.

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ME Association @meassociation.org.uk · 20h

1/2: We're looking for people who want to share their experience of ME/CFS and how the ME Association has helped them over the years. #MECFS

IMAGE DESCRIPTION: Photo of a cup of tea and a notepad and pen with 'Share Your Story' written on it.
Heading: "Can you share your story with the ME Association?"

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ME Association @meassociation.org.uk · 06/10/2026

David Tuller interviews George Monbiot on recent Guardian article: 'Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed'. Read a summary and extracts or watch the full interview here: meassociation.org.uk/y82q #MECFS

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ME Association @meassociation.org.uk · 06/10/2026

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! Find out more on our website: tinyurl.com/38pn7r2e #MECFS #Fundraising #LLHM2027 #LondonLandmarksHalfMarathon

IMAGE DESCRIPTION: Photo of people running a marathon. Heading: "Ready to take on a challenge for the MEA? Secure your place at the London Landmarks Half Marathon 2027!"
Logos: ME Association and London Landmarks Half Marathon.

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ME Association @meassociation.org.uk · 05/10/2026

The HERITAGE study needs people with lived experience of ME/CFS or Long Covid. Complete 5 surveys over 12 months to share your experiences and help shape better care and support. Join: heritage.leeds.ac.uk/join

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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

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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

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

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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

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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

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

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

📢 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

#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

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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

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: 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

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

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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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

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

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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?

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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.

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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

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 · 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 · 13/09/2026

Good luck and a BIG 'thank you' to everyone running for the ME Association at the Great North Run today!

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ME Association @meassociation.org.uk · 11/09/2026

The relatively new Suffolk Specialist Service is working in line with the latest NICE guidance on ME/CFS (NG206) and Long Covid (NG118), with documents that demonstrate good practice in delivering high-quality care.

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ME Association @meassociation.org.uk · 10/09/2026

Bethan Science published an early view study on 01.09.26 entitled 'Effects of Viusid in Long COVID: A Randomized Double-Blind Placebo-Controlled Trial' (Torres-Obando et el 2026) which covers effectiveness of a supplement, Viusid compared with placebo. meassociation.org.uk/pwun

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ME Association @meassociation.org.uk · 09/09/2026

This September, I Would Be Here If I Could begins a new tour, carrying messages from people with ME and Long Covid back to the places they love but can no longer reach. Find out more about I Would Be Here If I Could on their website: www.iwouldbehereificould.com #MirrorboxJourney

IMAGE DESCRIPTION: A photo of people sat beside the Mirrorbox on a hill top. The Mirrorbox is a large box people can step inside which is covered in mirrors reflecting the scenery around them.
Heading: 'The Mirrorbox Is Coming. Royal Opera House. 12-13th September 2026, 12pm - 6pm."

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ME Association @meassociation.org.uk · 07/09/2026

We're sending an enormous good luck to Robert, who will be spending 9 days hiking 110km from Sarria to Santiago de Compostela to raise funds for the ME Association! Help support Robert's fundraising by donating to his Just Giving page here: justgiving.com/page/robert-lee-110 #MECFS

IMAGE DESCRIPTION: Photo of Robert in his hiking gear and a purple MEA t-shirt, smiling at the camera. Heading: "Robert Lee is Hiking the Camino de Santiago for the ME Association!"

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ME Association @meassociation.org.uk · 07/09/2026

We’ve joined charities across the UK for Octopus Legacy’s national free Wills campaign. If you’ve been meaning to write or update your Will, now could be a good time to get started. Find out more: meassociation.org.uk/get-involved/l… #ChangeStartsWithAWill

IMAGE DESCRIPTION: A selfie of five women who are family smiling together at the camera, all from different generations. Text: 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 Legacy

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ME Association @meassociation.org.uk · 05/09/2026

Today is International Day of Charity, a chance to support a charitable organisation and cause that's close to your heart, whether that's by raising awareness, donating, or fundraising. Please support The ME Association this International Day of Charity: meassociation.org.uk/get-involved

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ME Association @meassociation.org.uk · 04/09/2026

We have released an updated version of our flu information booklet for winter 2026/2027. It's a personal choice whether to have the Flu vaccination and this booklet provides information that may help you to make that decision. Download: meassociation.org.uk/fjpw #MECFS #pwME #LongCovid

IMAGE DESCRIPTION: Photo of our Flu Information booklet.

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ME Association @meassociation.org.uk · 04/09/2026

Dr Charles Shepherd shares his thoughts on a new paper, “Beyond genes: EpiSwitch® and Orion platform-powered 3D genome architecture biomarkers reveal shared biology across ME/CFS, long COVID, PTSD, rheumatoid arthritis, and multiple sclerosis.” meassociation.org.uk/098d #MECFS #LongCovid

IMAGE DESCRIPTION: Graphic of a DNA strand. Heading: "New research into shared biological mechanisms of ME/CFS and other illnesses"

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ME Association @meassociation.org.uk · 04/09/2026

This helpful letter provides supporting evidence for the provision of disability aids such as wheelchairs, home adaptations and appliances for people with ME/CFS. It can also be used to help obtain aid from social care services. meassociation.org.uk/u1d8 #pwME #MECFS

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ME Association @meassociation.org.uk · 02/09/2026

On 02/09/2026, Nature published a new article by Simon Makin which provides a fairly comprehensive and up to date review of drug treatments that are being assessed for treating Long Covid and ME/CFS. Read more: meassociation.org.uk/c86o #MECFS #LongCovid #PostViral

IMAGE DESCRIPTION: Photo of a stethoscope, test tubes, and a clipboard.
Wording reads: Nature: When do infections lead to long COVID? Scientists close in on triggers and treatments for post-viral syndromes

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ME Association @meassociation.org.uk · 02/09/2026

Antiviral COVID-19 medication shows no benefit for Long COVID A trial into using Paxlovid to treat Long Covid has concluded that it provided no clinical benefit. Read more, including Dr Shepherd's comments, here: meassociation.org.uk/atnl #LongCovid #LongCovidResearch

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ME Association @meassociation.org.uk · 01/09/2026

ME Connect is our free, confidential support service offering an understanding ear, information and signposting for people affected by ME/CFS and Long Covid. Get in touch: 0808 801 0484 meconnect@meassociation.org.uk #MECFS #pwME

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ME Association @meassociation.org.uk · 28/08/2026

Medical Matters: Osteoporosis Q: Could some people with ME/CFS be at increased risk of osteoporosis (thinning of the bones) and what can be done to reduce the risk? A: meassociation.org.uk/medical-matter… #pwME #MECFS #MyalgicEncephalomyelitis #Osteoporosis

IMAGE DESCRIPTION: Photo of Dr Charles Shepherd. Wording: "Could some people with ME/CFS be at increased risk of osteoporosis (thinning of the bones) and what can be done to reduce the risk? Please click the link to read the answer in the Medical Matters database"

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ME Association @meassociation.org.uk · 27/08/2026

The next All Party Parliamentary Group (APPG) on ME meeting is scheduled to take place on 2nd September. Date: 2nd September 2026 Time: 1-2pm Location: Room T, Portcullis House Find out more: appgme.co.uk #MECFS #APPG #MyalgicEncephalomyelitis #pwME

IMAGE DESCRIPTION: Photo of the Houses of Parliament. Heading: "APPG on ME meeting scheduled to take place on 2nd September: contact your MP"
Logos: APPG on ME

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ME Association @meassociation.org.uk · 27/08/2026

The ME Association will be closed on Bank Holiday Monday. Head office will be closed on 31st August and will reopen at 09:30 on Tues 1st September. Our support and information service - ME Connect - will be open as usual. Info: meassociation.org.uk/mec We hope you all have a restful weekend.

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ME Association @meassociation.org.uk · 27/08/2026

This Forward ME briefing paper on the clinical assessment of people with very severe ME/CFS was prepared for the DHSC and NHS England in relation to an action point in the DHSC Delivery Plan. Download: meassociation.org.uk/literature/ite… #SevereME

Photos of the Forward ME briefing paper. Logos: Forward ME and ME Association

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ME Association @meassociation.org.uk · 26/08/2026

An info booklet on vision and ME/CFS, including: -How can ME/CFS affect your vision? -Maintaining good eye health -Visiting the optician -Visual symptoms often related to ME/CFS -Research findings on visual problems in ME/CFS tinyurl.com/mr2pp6t8

IMAGE DESCRIPTION: Photo of the cover of the MEA's booklet on 'Vision and ME/CFS', on top of a background photo of an eye test and a pair of glasses.
Wording reads: Free information booklet. Vision and ME/CFS. Download now.

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ME Association @meassociation.org.uk · 26/08/2026

2/3: IMPORTANT INFORMATION: Donating your body to medical research: If you wish to donate your brain and spinal cord to post-mortem medical research into ME/CFS; 1. You must have had a firm diagnosis of ME/CFS from a doctor, 2. Be aged 18 to 50 at the time of death,

Wording - What is the maximum age for donors? Donors must be between the ages of 18 and 50 at the time of passing and have a firm diagnosis of ME/CFS. The upper age limit is in place to try and ensure that any abnormalities that are found in the brain and spinal cord are not age-related and are more likely to be relevant to ME/CFS.

Wording - Can my family organise this for me? Your family can help you with organising your Statement of Intent before you pass, but you must have this completed, signed, dated and on record. Family members cannot make this request or state it was your wish to donate after death.

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ME Association @meassociation.org.uk · 26/08/2026

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.

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ME Association @meassociation.org.uk · 25/08/2026

1/2: Could you volunteer with our ME Connect Support Line? If you have empathy, compassion and understanding for those living with ME/CFS; excellent communication skills and some time to spare, we would love to hear from you. #MECFS

IMAGE DESCRIPTION: Photo of a man with his hand on another persons shoulder, representing support.
Heading: "Could you volunteer with our ME Connect Support Line?"
Icons: Graphic icons representing Email, Phone and Conversation.

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