ME Association

Call Directions Website Contact the organisation

ME Association We help to make the UK a better place for people with ME/CFS, PVFS, and Long Covid. You may not accept them. They may be the opposite of what you believe.
(235)

We want to give everyone affected by ME/CFS and Long Covid the opportunity to learn from the information we provide, benefit from the support we can offer, exchange views, make friends, and share experiences with people in similar situations. We know that many people have heartfelt views which is not surprising given the uncertainty surrounding these medical conditions. Yet there are some who seem to have immense certainty in their opinions and, when that belief is challenged, respond vehemently, and criticise people unfairly. We must remember that different people make different judgements on the same facts. This may be because they have different objectives, but often it is because they see different options, select other information and interpret that information differently. So can I please ask everyone who uses the website and social media to respect the views of others. But personal attacks on others will not be tolerated. They add nothing to a reasoned argument, indeed they portray the writer in a poor light. The website and social media are for those of us at home, too ill to meet and make friends in the outside world. They give us an opportunity that our illness denies us. We can swap stories, tell how we have been treated, pass on practical tips. We can debate the science while remembering that the science behind ME/CFS and Long Covid is still unfolding. We can listen and sympathise, support and encourage. This is what the ME Association online community is for. The future for all of us with these devastating illnesses does not lie with personal criticism. It lies in good research, mutual aid, information and support. David Allen, Interim Chairman, The ME Association. Please read and familiarise yourself with the Community Guidelines and Standards via the link below:

https://meassociation.org.uk/community-guideline-and-standards/

MEMBERS ONLY – Notice of Annual General Meeting of The ME Association and RegistrationThe next Annual General Meeting (A...
13/10/2026

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. 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.

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. https://meassociation.org.uk/AGM2026

What causes ME/CFS? posterThis poster, free to download, explores the different factors involved in causing ME/CFS based...
13/10/2026

What causes ME/CFS? poster

This poster, free to download, explores the different factors involved in causing ME/CFS based on current research: https://meassociation.org.uk/sdhw

“I’ve spent a lot of the last decade lying flat in the dark, unable to meaningfully engage with anything or anyone outsi...
12/10/2026

“I’ve spent a lot of the last decade lying flat in the dark, unable to meaningfully engage with anything or anyone outside of my own mind. I deeply miss vitality, spontaneity, opportunity.”

The Mirrorbox will be in Jubilee Square, Brighton, this weekend.

Please visit if you can, and write a postcard to Cate, who would be there if she could.

News Medical: Severe long Covid associated with distinct oral and lung microbiomes "A study of more than 700 people has ...
12/10/2026

News Medical: Severe long Covid associated with distinct oral and lung microbiomes

"A study of more than 700 people has shown that those with long Covid have distinct differences in the mix of bacteria that live in their mouths and lungs, according to a study published today (Monday) in the European Respiratory Journal.

The research also shows that these differences in the lung microbiome are linked to respiratory symptoms, as well as the cognitive and digestive problems known to occur in long Covid."

Read more: https://www.news-medical.net/news/20261011/Severe-long-Covid-associated-with-distinct-oral-and-lung-microbiomes.aspx

12/10/2026

Seeds of Hope: Andy’s story

We’ve loved seeing Andy’s Seeds of Hope journey this summer and now we’re delighted to share the video he created, bringing together some of his favourite photos of his sunflowers growing.

What started with a few seeds became a lovely summer project for Andy, his niece, and his nephew. There was even a little family competition along the way… although Andy’s sunflower certainly had the height advantage!

For Andy, growing his sunflowers was about more than gardening. After a difficult couple of years, being able to spend more time in his garden, enjoy the sunshine and share something with his family meant a lot.

We’re so grateful to Andy for sharing his story with us. You can read more about Andy’s story in the next edition of our members magazine, ME Essential.

We’d love to see how your Seeds of Hope are growing too! If you’ve taken any photos or made a video, please share them with us in the comments or tag the ME Association. We’d love to see them!

BBC News Surrey shares Kieran's story of Severe ME: 'I was a bedbound ME sufferer, but I can offer hope'"Kieran Barnavil...
12/10/2026

BBC News Surrey shares Kieran's story of Severe ME: 'I was a bedbound ME sufferer, but I can offer hope'

"Kieran Barnaville, who is among the 404,000 people the ME Association estimates have the condition, spent years unable to speak or leave his bed as a teenager."

BBC News article: https://www.bbc.co.uk/news/articles/cmj478dxxwkvo

Read Kieran's full story, and listen to his interview on Radio Jackie, on the blog: https://meassociation.org.uk/rdus

N.B. Having a positive mental attitude may help some people to deal with the emotional aspect of having ME/CFS, as a chronic long-term illness (with currently no effective treatments or a cure) can be understandably difficult to deal with. However, we are all individuals and what may help one person may not be suitable for another person with this disease.

A man from Leatherhead who spent a decade bedbound with chronic fatigue syndrome said he is "learning how to interact with the world again".

More here: https://bbc.in/3VzhXuV

📢 Help shape the future of care for ME/CFS and Long Covid!The HERITAGE study is looking for people with lived experience...
12/10/2026

📢 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!
As a part of Work Packages 1 and 2, you will:
✅ Complete 5 questionnaires over 12 months
✅ Share your symptoms and experiences
✅ Help us develop a framework for better care and support for people living with ME/CFS and Long Covid
✅ Contribute to research that will inform future healthcare services
Please note: Recruitment for Work Package 3 (interviews) has now closed. However, we urgently need participants to contribute by reporting their symptoms through our surveys
👉 Your voice can help shape better care. Take part today and help build the evidence needed to improve support for people with Long COVID and ME/CFS.
🔗 https://heritage.leeds.ac.uk/join/

PIP reform: latest update from the Timms Review and new research on PIP decision delaysThe government’s Timms Review pub...
12/10/2026

PIP reform: latest update from the Timms Review and new research on PIP decision delays

The government’s Timms Review published an update in September 2026, outlining 'emerging recommendations' and proposed ‘principles for a reformed benefit' for Personal Independence Payment (PIP). These proposals are still being developed. They are not confirmed changes to PIP eligibility rules or assessment procedures, and the government has not committed to implementing every proposal.

Additionally, anti-poverty charity Z2K has published research highlighting delays in benefit decisions.

The ME Association is sharing these developments as part of our ongoing information on disability benefits.

Read more on the blog: https://meassociation.org.uk/kfpk

JAMA/Journal of the American Medical Association:Long COVID - The Problem Society Wants to ForgetLong COVID is a debilit...
11/10/2026

JAMA/Journal of the American Medical Association:

Long COVID - The Problem Society Wants to Forget

Long COVID is a debilitating condition impacting millions of people around the world, but is still poorly understood, poorly defined, and poorly treated.

In this episode of Healthy Dialogue, host Derek C. Angus, MD, MPH, discusses long COVID with Wes Ely, MD, MPH, professor of medicine at Vanderbilt University, and co-author of the NASEM report on Long COVID.

=============================================

Society has largely put the COVID-19 pandemic in the rearview mirror, both because the acute crisis has subsided and because, frankly, it was a scarring experience.

However, for many millions of people around the world, their COVID-19 experience continues as they live with the health consequences of long COVID, manifesting as an array of protracted and debilitating symptoms that disrupt work, relationships, and daily life.

Long COVID remains poorly understood, poorly defined, and poorly treated, with many patients feeling forgotten and isolated by society and the health care system.

In this episode of Healthy Dialogue, E. Wesley Ely, MD, MPH, professor of medicine at Vanderbilt University and coauthor of the National Academies of Sciences, Engineering, and Medicine (NASEM) reports on long COVID.2

The presenters discuss what Long Covid is, why it has been so difficult to define, and what it will take to better care for the people affected by it.

https://jamanetwork.com/journals/jama/fullarticle/2854450

Dr Charles Shepherd
Hon Medical Adviser MEA.

Long COVID, including the difficulty in defining it and caring for patients experiencing it, is discussed by JAMA Senior Editor Derek C. Angus, MD, MPH, and E. Wesley Ely, MD, MPH, professor of medicine at Vanderbilt University, for this episode of the Healthy Dialogue podcast.

Radio coverage of severe ME/CFSKieran Barnaville (23) from Leatherhead developed a very severe form of ME/CFS following ...
11/10/2026

Radio coverage of severe ME/CFS

Kieran Barnaville (23) from Leatherhead developed a very severe form of ME/CFS following glandular fever as a teenager

Kieran shared his story in this radio interview last week to help raise awareness of ME/CFS

https://meassociation.org.uk/2026/10/kieran-shares-his-experience-with-severe-me/
Dr Charles Shepherd
Hon Medical Adviser MEA.

Kieran, who had Severe ME for 10 years, has shared his story on Radio Jackie, alongside an interview with Dr Charles Shepherd.

Address

The ME Association, 7 Apollo Office Court, Radclive Road
Buckingham
MK184DF

Opening Hours

Monday 9:30am - 3pm
Tuesday 9:30am - 3pm
Wednesday 9:30am - 3pm
Thursday 9:30am - 3pm
Friday 9:30am - 3pm

Telephone

+441280818963

Alerts

Be the first to know and let us send you an email when ME Association posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organisation

Send a message to ME Association:

Shortcuts

Share