🧬Science Wednesdays: Estimating Lifetime Prevalence of #MECFS Based on published research, the lifetime prevalence of ME/CFS is over 279 million people, which is around 1 in 29. 🔗 Read more about lifetime prevalence of ME/CFS: https://ow.ly/iR4q50Ysroa

Four significant events over the past 5 years which were all meant to lead to radical change in the understanding of #ME & the care of #pwME That change isn't happening, government & the NHS fail us & the BPS cabal push back at every potential breakthrough. #MEAwareness

@nicecomms.bsky.social g'lines for #ME '21➡️Denounced by BPS cabal Royal Colls & ignored by Drs Inquest into death of Maeve Boothby O'Neill '24 Changes demanded in care of #pwME➡️Not implemented by NHS Decode ME '25➡️Findings denounced by BPS cabal Delivery Plan 4 #ME announced '22➡️'26 still waiting

#MedSky this👇is what continues to happen to #pwME, it's how the vast majority of Drs & HCPs respond to #pwME, this attitude has lead to the deaths of #pwME, it's how you broke our trust & why a huge number of us avoid seeing you when we need to. #ME #MEAwareness

Labour's core voters, on which its re-election entirely depends, are crystal clear about this: they absolutely hate its illiberal, intolerant, draconian, rightwards turn. Hence the total collapse in support. So how does the government respond? #SuicideMission🤦‍♂️ thesecretbarrister.com/2026/03/07/k...

For every woman in the #ME & #LC community on #InternationalWomensDay Endless gratitude to every one of you for your courage, strength, compassion & resilience We're suffering due to widespread medical misogyny & our resistance will change how medicine treats women everywhere💙

Clip 3 BBC Politics North: Luke Akehurst MP says it’s “shocking” that #LongCovid services are being closed when ~2 million people live with the condition and about half consider themselves disabled. Covid is “not yesterday’s problem”, it is still causing events to be cancelled.

Clip from BBC Radio Sheffield : @franhaddock.bsky.social calls in to speak to Paulette Edwards about #LongCovid, #MECFS, post-exertional malaise, and why being “deconditioned” is not the cause of her condition. (10 mins) Aired yesterday. youtu.be/uNbKpnxX3jU?...

Full video: Dr Binita Kane on her journey from NHS respiratory consultant to setting up an ME and Long Covid clinic (52 mins). youtu.be/pk00btt7CVs?...

Clip: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness. The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.

Dr @binitakane.bsky.social explains how a theory that #MECFS is caused by deconditioning and a fear of exercise permeated medicine and framed the illness as psychological. This led to the patients being neglected, gaslit, and some would say abused. Causing huge trauma for the community.

Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention. Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.

Full video (3 mins): BBC South report on an ME/CFS Alliance event on the future of research. Chris Ponting discusses findings from DecodeME, while patients describe living with the condition and their frustration at the lack of further government funding. youtu.be/mUetU91KW98?...

Clip from yesterday’s BBC South report about the #MECFS Alliance event on the future of #MECFS and #LongCOVID research. Sam, an ME patient, says the government failing to fund further research after the success of DecodeME is “absolutely disgraceful”.

For anyone who would like the clip (including George).

We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt.bsky.social. In her blog, Tessa lays out the case for change and how to get involved. Link in next post 👇

"One should not give a poisoner medicine, A conjurer fine apparatus, nor A rifle to a melancholic bore." WH Auden Not to mention the biggest arsenal in the world to a narcissistic attention-seeker.

If any #pwME would like to send Savannah Vitoria-May a card for her 24h birthday on Saturday, her new address is below. We are all hoping she is receiving far better care in the Wonford than she did in QEH. Let’s celebrate her move and send her some love. 💙 #ME

@sharonhodgsonmp.bsky.social will replace Ashley Dalton Assuming she therefore takes responsibility for the Delivery Plan for #ME given that #pwME remain in an ongoing crisis with patients lives at serious risk while under @england.nhs.uk care, we need her assurance that she will prioritise #ME

Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe #LongCOVID and Myalgic Encephalomyelitis (#ME). 🧵 youtu.be/pk00btt7CVs?...

Safe Air Schools UK has been calling for attendance policies aligned with public health, including ending the counterproductive 100% attendance awards that penalise medically vulnerable pupils #CleanAirForAll #LongCovidAwareness

Donald Trump is a global chaos generator. He couldn't give a damn about the Iranians and will walk away the moment things get difficult, leaving a trail of pointless death and destruction. It's all about spectacle for him. Once that's achieved, job done.

It would be great if someone feels able to invite @greenpartyhan.bsky.social to be a member of the APPG on #ME now! @sianberry.bsky.social @tessamunt.bsky.social ?

The small, brave band of MPs who represent the trampled, not the tramplers, has a very welcome new member. We should all ask ourselves why, in a supposed democracy, such representatives are so rare. www.theguardian.com/politics/202...

Jonathan Edwards and other members of @scienceforme.bsky.social are drafting a document on what we want in terms of service provision for ME/CFS. Latest draft here: www.s4me.info/threads/a-th... All welcome to comment and make suggestions before the document before it is finalised.

@ashleydaltonmp.bsky.social Your words “these must become never events” PLEASE INTERVENE TO SAVE LIFE Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS www.meresearch.org.uk/claims-of-nh...

Speakers include Christopher Armstrong, Chris Ponting @cgatist.bsky.social , Oystein Fluge, David Putrino @putrinolab.bsky.social , Carmen Scheibenbogen @scheibenbogen.bsky.social , and many other ME/CFS experts. #MEcfs #LongCovid

If Labour followed its own logic, it would now step aside and let the Greens walk home in this crucial by-election. It is hard to imagine how Starmer and co could have made a bigger fist of this - and of everything. My column. www.theguardian.com/commentisfre...

Broadly speaking, there are 2 political factions. Not Labour v Tory/Reform, Republicans v Democrats etc, but an economic elite, operating globally, versus all of us. Though they are small in number, through the power of the political, media and social media systems they control, they keep winning.

The British Association of Clinicians in ME/CFS issued a "therapy guide" last year. Very unsatisfactory. Professor Jonathan Edwards and colleagues have responded in an open letter. I spoke with Professor Edwards about it. virology.ws/2026/02/20/t...

🌟The first in our new 101 back to basics series. In this article we look at Psychologisation. If there's a topic you'd like us to cover please let us know in the comments! 🎧 Audio available 🖇️ tinyurl.com/52vthd5b

🎉 Some Good News with the launch of SEQUENCE ME & Long COVID. Led by Ponting & Birney, this bold study is exactly the direction research needs to take. More details & donation link on Action for ME website: 🖇️ tinyurl.com/mr96dxj4

✉️ Strong Open Letter from Bull, Edwards & Crawford in response to BACME's 'Guide to Therapy' 2025. 👉 Dysregulation theory speculative 👉 Vague active therapy rec that serves BACME more than patients 👉 Deceptive jargon In essence = BACME should be shut down 🖇️ tinyurl.com/373hbbc5

🥪Beware if someone serves you a baloney sandwich: Bread = Lots of über praise about how they believe you, your symptoms are 'real' Filling = Then comes the psychologising! Bread = More sympathy on how the illness has been dismissed & the stigma etc. 💣 Medical love bombing is medical gaslighting.

BPS Cabal member Robert Howard is hoping to become the next president of the Royal College of Psychiatrists Howard is openly hostile towards #pwME & biomedical #ME research It would be great if the #ME orgs could challenge his nomination on this basis www.rcpsych.ac.uk/about-us/our...

There's an apparent increase in Neurologists who are refusing to recognise #ME, automatically diagnosing #pwME as having FND I wonder if FND-BPS proponents are feeling threatened by the @decodemestudy.bsky.social results & are doubling down & as ever are willing to harm #pwME in the process

Save Savannah Victora-May Prevent Another #ME Tragedy Please keep Signing & Sharing the Petition ✍️🔁 c.org/ccd8GhpyTt

If there are any online protests scheduled to try to raise awareness & support for Savannah & call out Lewisham & Greenwich NHS Trust please do let us all know Many #pwME feel helpless in the face of what's happening & we need support to organise an accessible protest 🪧📢🪧

Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18. Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die. archive.ph/J3Xv3

Our public services aren’t for a secretive profit-hungry US tech firm. Sign the petition to tell the Government to scrap all contracts with secretive US tech firm Palantir. you.38degrees.org.uk/petitions/st...

When people say “but what about the good policies” they fail to understand the anger these things produce. As someone living on benefits due to disability & *still trying* to get PIP, the attack on disability alone was so personal, so cruel, literally nothing they do now would make me trust them

Labour front benchers scratch their heads and wonder why their base has collapsed, why so many people are disillusioned, frustrated, furious. I mean, what is it about pissing on every value and principle your party once upheld that alienates the electorate? Beats me. 🤔

The language used to describe the symptoms of #ME & experiences of #pwME does nothing but downplay & misrepresent what we experience It's played straight into the hands of all those who deny & mislead about the truth - that #ME is a potentially fatal multi-system biomedical illness.

"Disabled People Fightback" banner from People's History Museum 2014 from the exhibition 'Design & Disability' at V&A Museum South Kensington, on now. I live close to the V&A, would love to go, but like hundreds of thousands of #pwME am much too disabled.

We have a poll out to decide on our spring read! There's some crackers to choose from: - Unwell Women by Elinor Cleghorn - Air-borne by Carl Zimmer - Disfigured: On Fairy Tales, Disability & Making Space by Amanda Leduc Just comment your choice! Fable: tinyurl.com/3r2ctufh

Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026. The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below! 1/9 #MECFS #pwME #OpenCall #OnlineExhibition

A few things I've read recently: Maryland supports Long Covid research, @anilvanderzee.bsky.social on CBT in the Netherlands, and thoughts on hope and chronic illness: virology.ws/2026/02/11/t...

30 years later, the exact same argument was reproduced by Suzanne O‘Sullivan in her chapter on Long Covid in ‚The Age of Diagnosis‘, plucked out of thin air, for all I know: ok, some few people have real organic disease, but for the vast majority it’s psychosomatic. Yeah, right. #LongCovid #ME

New study: People with ME/CFS and Long COVID show a clear drop in how their bodies make energy after exertion. This drop appears on repeat testing, and not just from being unfit.