ME Association

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.
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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/

Blue Sunday 2026 has raised over £15,500 for ME/CFS charities including The ME Association - thank you to all who took p...
01/06/2026

Blue Sunday 2026 has raised over £15,500 for ME/CFS charities including The ME Association - thank you to all who took part and to Anna / M.E. myself and I for organising!

The numbers are (nearly all) in and I can now share that Blue Sunday 2026 has raised a staggering £15,500! We’ll never now the exact number (it’s not been the best year for communicatio…

David Tuller: Interview with Professor Chris Ponting about Sequence ME & Long COVIDhttps://www.youtube.com/watch?v=fyWw2...
01/06/2026

David Tuller: Interview with Professor Chris Ponting about Sequence ME & Long COVID

https://www.youtube.com/watch?v=fyWw2kvJAPo

Sequence ME will build on the findings from DecodeME, and should provide a deeper understanding of the underlying disease process, in particular how the immune and nervous systems respond to a triggering infection in ME/CFS. Read about the GOV UK announcement of £4.75M towards Sequence ME here:

https://meassociation.org.uk/xa0z

Last year’s release of the results from the DecodeME, a UK-based ge...

Carers UK has submitted a response to the Timms Review on PIPCarers UK say: 'Thank you to the unpaid carers whose voices...
01/06/2026

Carers UK has submitted a response to the Timms Review on PIP

Carers UK say: 'Thank you to the unpaid carers whose voices and experiences strengthened our submission."

Carers UK submitted a response to the Timms Review on the future of PIP - thank you to the unpaid carers whose voices and experiences strengthened our submission.

We call on the Government to adopt a whole-family approach to PIP reform, recognising the vital links between PIP and carers' benefits.

Parliamentary Questions (PQs) on ME/CFS & Long Covid: May 2026We've listed the PQ's for May, including several questions...
01/06/2026

Parliamentary Questions (PQs) on ME/CFS & Long Covid: May 2026

We've listed the PQ's for May, including several questions from Baroness Scott of Needham Market (Lib Dem), who is a member of the All-Party Parliamentary Group on Myalgic Encephalomyelitis ( ):

More info here: https://appgme.co.uk/who-we-are/

We'd like to highlight a question and its answer raised by Liz Jarvis (Lib Dem):

Q: To ask the Secretary of State for Health and Social Care, what timetable his Department has set for implementing the commitments relating to research, attitudes and education, and support for people living with ME/CFS contained within the Government’s policy paper entitled 'ME/CFS: the final delivery plan'; whether his Department plans to publish regular progress reports or annual reviews on implementation; what assessment he has made of whether NHS bodies have sufficient workforce capacity and resources to deliver the commitments contained within the plan; and whether any delivery timelines or implementation milestones have been revised since the plan’s publication.

A: Paragraph 4 says the following

The Medical Schools Council will promote the e-learning programme to all United Kingdom medical schools and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. Additionally, the Department has taken steps towards developing the awareness campaign that was committed to in the plan.

Read the answer in full here:

https://questions-statements.parliament.uk/written-questions/detail/2026-05-14/1497

Find the link to all May 2026 PQ's here:

https://linktr.ee/MECFSLC.ParliamentaryQs

** Trigger Warning - Upsetting Content ** The Gordon family has provided an update on Karen's condition and emails from ...
01/06/2026

** Trigger Warning - Upsetting Content ** The Gordon family has provided an update on Karen's condition and emails from East Sussex Healthcare NHS Trusts’ solicitors.

Karen has been in Conquest Hospital for 2 years and 5 months. She struggles significantly with hot weather due to severe ME, and during the recent heatwave her hospital room exceeded 30°C.

Solicitors for East Sussex Healthcare NHS Trust (ESHT) contacted Karen’s solicitor regarding a legal matter at the end of last year, however soon afterwards Karen became severely ill with infections, requiring four courses of IV antibiotics and two procedures under general anaesthetic, making it impossible for her to deal with legal correspondence.

Despite being informed repeatedly that Karen was too ill, ESHT solicitors continued to chase for updates, creating extra work, stress, and exhaustion for Karen and her family. In April, Karen began reviewing the legal letter and preparing instructions for her solicitor, but the process remains exhausting and stressful

Read in full: https://meassociation.org.uk/w5zl

Healthcare Bulletin: Our healthcare team recently delivered an educational session for Continuing Healthcare (CHC) nurse...
01/06/2026

Healthcare Bulletin: Our healthcare team recently delivered an educational session for Continuing Healthcare (CHC) nurse assessors within Thames Valley ICB on Very Severe ME/CFS and its relevance to CHC assessment.

Feedback was extremely positive, with attendees reporting improved understanding and awareness of the condition.

The session covered:
▶️Signs, symptoms, diagnosis and severities of ME/CFS
▶️Assessment and management considerations for severe and very severe ME/CFS
▶️How Very Severe ME/CFS aligns with CHC Decision Support Tool (DST) domains
▶️Key professional resources, including NHS e-learning, the new Very Severe ME SNOMED code, MEA resources and NICE guidance.

Following the positive response, we have been invited to deliver further sessions.

If your CHC team would like to learn more about Very Severe ME/CFS, please contact us at: [email protected]

Food allergies, Natasha's Foundation and a £10 million prize to advance research into food allergyFood intolerance and a...
31/05/2026

Food allergies, Natasha's Foundation and a £10 million prize to advance research into food allergy

Food intolerance and allergy can complicate ME/CFS

Natasha's Foundation is a charity that is promoting and funding research into food allergy

Professor Stephen Holgate, whose main area of expertise is in immunopharmacology, and is also very involved with various ME/CFS research initiatives, is working with this charity on this major boost to research into food allergy

More information on the charity here:

https://www.narf.org.uk/leading-allergy-scientist-makes-plea

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Report (paywalled) on the research prize in The Sunday Times today:

The parents of a teenager who died after eating a baguette from Pret A Manger have launched a prize worth £10 million to fund research designed to stop food allergies from developing in the first 1,000 days of a child’s life.

July 17 will mark exactly ten years since Natasha Ednan-Laperouse died aged 15 after going into cardiac arrest on a flight to France, having consumed a sesame hidden in the Pret lunch she bought before she boarded.

Now, Natasha's Foundation, the charity her parents set up in her memory, is launching a competition that asks entrants what interventions, from conception to the age of two, could prevent food allergies from developing.

Sir Stephen Holgate, professor of immunopharmacology at the University of Southampton and director of the prize, said: “We need a completely new approach — that is what Natasha’s Prize is seeking to achieve. There have been so many encouraging new developments in our understanding of food allergy over the past few years. However, we will launch Natasha’s Prize with open minds.”

https://www.thetimes.com/uk/science/article/natashas-prize-eradicate-food-allergies-hpz3sp5wk

Dr Charles Shepherd
Hon Medical Adviser MEA

Ten years after their teenager died of a reaction from a Pret baguette, the family are targeting the problem at source: the first 1,000 days of life

UPDATE on BBC ‘Morning Live' covers ME/CFS As we have already reported, the statement on this programme about CFS being ...
30/05/2026

UPDATE on BBC ‘Morning Live' covers ME/CFS

As we have already reported, the statement on this programme about CFS being the best way to describe this disease has caused a lot of upset and complaints to the BBC

The MEA has written to Dr Duke (as below) and we have also been in contact with the BBC

As a result it looks as though the BBC are now going to return to the subject of ME/CFS next week

We are providing them with information on nomenclature, research, management and the DHSC Delivery Plan actions relating to very severe ME/CFS

Dr Charles Shepherd
Hon Medical Adviser MEA.
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Email to Dr Duke (no reply so far):

Dear Dr Duke

Firstly, thank you for covering SequenceME - the very important genetic research into ME/CFS that is taking place in Edinburgh - on BBC ‘Morning Live'

If you return to ME/CFS please could you consider covering what is the largest research study so far (being funded by the ME Association) at Imperial College to investigate the overlaps between ME/CFS and Long Covid:

https://www.imperial.ac.uk/news/articles/medicine/immunology-inflammation/2025/11m-awarded-to-investigate-links-between-mecfs-and-long-covid/

Unfortunately, as you may be aware, the ME patient community was very upset when you stated that CFS is probably the best way to describe this disease.

The ME patient community really dislike the term CFS and I agree with them. It's like describing dementia as a chronic forgetfulness syndrome or Parkinson's disease as a chronic shaking syndrome.

The issue of nomenclature for ME and CFS is described in more detail here:

https://meassociation.org.uk/medical-matters/items/pvfs-mecfs-long-covid/

The ME patient community therefore would be very grateful if you could avoid making this statement if you do report on ME/CFS again.

And please let me know if I can be of any assistance in relation to either research or management of ME/CFS.

Kind regards

Dr Charles Shepherd
Hon Medical Adviser ME Association

https://m.youtube.com/watch?v=bmBey1dP6IQ&ra=m

Ends

BBC Morning Live covered the new £4.75m UK government-funded ME/CFS...

Final day of   live stream this afternoon!Becky has been live-streaming 10hrs of virtual truck driving, under the gaming...
30/05/2026

Final day of live stream this afternoon!

Becky has been live-streaming 10hrs of virtual truck driving, under the gaming tag in aid of the ME Association:

https://www.youtube.com//streams

More information and donate link here:

https://www.justgiving.com/page/10-for-10

Hi fellow warriors 👋
It’s here, today’s the day, it’s my final livestream. There’s honestly been a few times I didn’t think I’d make it. I’m currently sat at a total of 8 hours, 37 minutes and 6 seconds. I know a total of 10 hours throughout May doesn’t seem a lot, but when you’re working with a body running on M.E. believe me 10 hours might as well be 100 hours or 1000 hours. Live-streaming is a challenging thing to do, it’s draining, and even more so with M.E. But. I have had a blast doing it, and this might not be the end end 😉but it is the end for my fundraiser event.
So, let’s make it the best yet, let’s go out with fireworks, with a bang 💥 Join me from around 1pm ish, live on https://youtube.com/ “sit in the cab” of the truck with me as we drive around the UK making deliveries.
If you’d like to donate and help see how much further over my initial target of £100 we can go, then donate here https://www.justgiving.com/page/10-for-10
This has all been in aid of the amazing ME Association and every single penny goes to them and helps them in research of M.E.
You have smashed the target, now it’s my turn to smash my challenge 🚚💪
Keep fighting, keep smiling and see you on the road 💪🙂🚚

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

Website

https://uk.linkedin.com/company/me-association, https://meassociation.org.uk/MECD, htt

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