iiinova — where your digital self keeps evolving

ME Association @meassociation.org.uk · 2h

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.

021

ME Association @meassociation.org.uk · 4h

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

130

ME Association @meassociation.org.uk · 4h

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

020

ME Association @meassociation.org.uk · 9h

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"

111

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

021

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"

111

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

065

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

064

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

2198

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.

143

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!

061

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.

1157

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.

043

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

053

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?"

134

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

031

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.

132

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.

129710286

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."

101

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

132

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.

041

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?

100

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.

121

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"

013

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"

110

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...

011

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

022

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!

063

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

Research: Blood volume and orthostatic intolerance in ME/CFS On Sept 9, the Physiology Society published a study in Physiology Reports entitled 'Total blood volume & red blood cell volume are not associated with orthostatic intolerance in adults with ME/CFS’ Read more: meassociation.org.uk/spgu

meassociation.org.uk

Research: Blood volume and orthostatic intolerance in ME/CFS - The ME Association

On the 9th of September, the Physiology Society has published […]

041

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.

123

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

BSW Long COVID service closure put on hold following public and ME Association engagement "The strength of feedback has led the ICB to undertake further review work, including exploring broader models supporting people with Long COVID & other post-viral condition.” meassociation.org.uk/anmi

meassociation.org.uk

BSW Long COVID service closure put on hold following public and ME Association engagement - The ME Association

The future of the Bath, North East Somerset, Swindon and […]

031

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

010

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."

0156

ME Association @meassociation.org.uk · 08/09/2026

Janet Sylvester from ME Action Scotland and Long Covid Scotland‘s Stuart McIver and Jane Ormerod contributed to an evidence gathering meeting at Holyrood - you can watch the clip compiled by Adam (AKA @BrokenBattery) on YouTube and read more on the blog: meassociation.org.uk/qjsh #MECFS

meassociation.org.uk

#MEAction Scotland give evidence to the Health, Care and Sport Committee at Holyrood - The ME Association

#MEAction Scotland and Long Covid Scotland gave evidence at a committee meeting in Holyrood, the Scottish Parliament.

084

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!"

131

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

022

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

020

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.

141

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"

046

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

016

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

112

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

1104