TRAILER: Buried Alive with M.E. I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm. People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death. #pwme #millionsmissing #severeME 1/

@rthonwesstreeting.bsky.social Coroners’ prevention of future death notices should not be ignored #pwME should not starve to death or be wrongly institutionalised because no NHS specialist services exist for #severeME Successive governments have known for decades #JusticeForME #HumanRightsAbuse

@tessamunt.bsky.social @ashleydaltonmp.bsky.social this open letter calls for exactly the right thing. We must stop unnecessary deaths by developing a safe (very) severe NHS hospital protocol. Also needs a specialist ward that's suitable for people with the severe sensory issues. #SaveSavannah

In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding. She explains why CHC funding for very severe ME is an issue that deserves attention. 🔗 in next post 👇

My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...

5-page post-exertional malaise ( #PEM) fact sheet www.s4me.info/docs/PEM_Fac... Headings: -Characteristics of PEM -Symptoms of PEM -Exertion and other PEM triggers -Effects of exertion that are not PEM -Living with PEM -Examples of PEM -Research on PEM -References #MEcfs #CFS #pwME #LongCovid 1/

Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Dec. 29 - Jan. 4. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...

Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 17 - 23. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...

I came to this country as a child refugee. No English, no certainty, no idea what my life could become. Britain gave me refuge. Not on a timer, not with conditions attached, but with a chance to grow roots. A thread 🧵 1/8 www.bbc.co.uk/news/article...

Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 3 - 9. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...

From people who did LP: “Then they tell you that it’s your own fault for having ME, because you’re doing ME. I became physically exhausted and unwell, and felt guilty because you would have to be pretty stupid when you’re making yourself ill.”

Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Oct. 20 - 26. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long. There's a huge BUT coming ...🧵 www.theguardian.com/society/2025...

Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 8-14. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk

My rapid response at BMJ is online now. I joined the chorus of protest about an opinion piece claiming people with severe ME/CFS can recover by "reframing their beliefs" &c. People with ME/CFS deserve so much better than that: www.bmj.com/content/389/... #MECFS

I did my safeguarding level 3 mandatory training this week on FII (Fabricated or induced illness - seen as a form of child abuse) and PP (perplexing presentations) i.e. symptoms that don’t make sense to paediatricians. Look at the symptoms that these ‘abusive’ parents may report.

Our latest News in Brief post has headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of June 9 - 15. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...

🧵 I thought this was good (as I'd expect from @oonaghcousins.bsky.social & @thereforme.bsky.social team): "The importance of understanding rest: How my experience of rest as an athlete clashed with my experience of rest as a patient" www.thereforme.uk/p/the-import... #MEcfs #LongCovid 1/

The BMJ has a long history of publishing stuff promoting the "biopsychosocial" approach to ME and ME/CFS: virology.ws/2025/05/24/t...

The BMJ have published Dom Salisbury’s rapid response to Miller et al’s Opinion piece. He mentions PEM as the definitive symptom. #ME

The Science for ME forum has published a fact sheet on PEM, post-exertional malaise. This fact sheet may be copied and used freely by individuals and organizations. Forum version: www.s4me.info/threads/scie... PDF version: www.s4me.info/docs/PEM_Fac... #MEcfs #PwME

It is sad to see @bmj.com platforming quack therapies in 2025 The mind-over-matter approach to #MECFS has been debunked for years, but a cadre of psych devotees in the UK persist in peddling evidence-free miracle cures Pure and utter pseudoscience #pwME #LongCovid @georgemonbiot.bsky.social

The BMJ has now published my rapid response to Miller et al's Opinion piece. www.bmj.com/content/389/...

The Science for ME international forum has published the second of our series of fact sheets. This one is about post-exertional malaise (PEM). Please share in ME/CFS and Long Covid and medical communities. #me/cfs, #longcovid www.s4me.info/docs/PEM_Fac... www.s4me.info/threads/scie...

#MECFSAwarenessMonth – Day 5 1991, the Oxford criteria for CFS were published. Vague and overly broad, they effectively identified people with unexplained fatigue. Despite being seriously flawed, they became popular in UK research and distorted understanding of ME for decades.

Amazing video 🙌 It's striking how it takes lived experience for many Drs to understand how people with neglected infection associated chronic conditions are treated. That's the extent of the medical silencing 🧪

1) In the past weeks I’ve helped to develop the first factsheet for the Science for ME forum. The goal was to summarise what is known about ME/CFS in a brief text and in easy to understand language.

My 27-minute #MECFS Medical Scandal Explainer video has just hit 100,000 views on YouTube. Given that I've only got a small channel, I think this shows there is a strong interest in the scandal. Thank you to everyone who shared it!

Find #MECFS, #LongCovid, and related news, advocacy and research from w/c 17th Feb in our latest News in Brief post. Headlines and links to further reading for; News, advocacy and articles Research news and commentary and Published research www.s4me.info/threads/news...

A letter to Cochrane requesting withdrawal of its flawed, outdated 2019 review of exercise therapy for chronic fatigue syndrome, in the wake of the organization's abrupt Christmas decision to abandon a planned update. virology.ws/2025/02/20/t...

Me last night: Maybe this week’s column was a bit harsh on Labour. Perhaps they’ll start to see disability benefits in a more nuanced way and respect the people relying on them. Labour this morning:

Out now, our News in Brief post for w/c 3rd Feb. Covering #MECFS, #LongCovid, and related news, advocacy and research. Headlines and links to further reading for: News, advocacy and articles More on Cochrane's actions Resources and Published research www.s4me.info/threads/news...

The committee of @scienceforme.bsky.social international forum has submitted a set of complaints to #Cochrane. "Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it." www.s4me.info/threads/s4me...

Here's my piece for @thesicktimes.bsky.social about Cochrane's broken promises to ME/CFS patients over its crappy 2019 exercise therapy review. thesicktimes.org/2025/02/04/r...

The following #MECFS, #LongCovid, and related topics from w/c 20th Jan are covered in our latest News in Brief post. Cochrane review of Exercise Therapy for ME/CFS Other news, advocacy and articles Research news and commentary Coming events & Published research www.s4me.info/threads/news...

I never thought a day would come when I would write a post this critical about the Cochrane Collaboration. But today was that day: absolutelymaybe.plos.org/2025/01/24/w... #mecfs

“It’s hard to find a word to describe how badly they [Cochrane] treated everybody involved in this,” she said. “It’s been pretty appalling behavior.” Hilda Bastian...a founding member of the Cochrane Collaboration. retractionwatch.com/2025/01/23/t...

Find headlines and links to further reading from w/c 6th Jan for #MECFS, #LongCovid, and related news, advocacy and research in our latest News in Brief post. Topics this week: News, articles and advocacy Coming events Research news & Published research www.s4me.info/threads/news...

Petition update: On Cochrane's excuses for scrapping the replacement review process they set up: Part 1 In which we examine Cochrane's claim that a lack of resources meant that they couldn't complete their own review of Exercise for #MECFS. www.change.org/p/cochrane-w...

It’s clear Cochrane has flash-incinerated all remaining illusions of competence and goodwill for reasons that purposely will remain unknown. Time for us writers to take this effort outside of the Cochrane brand. It’s too important to do nothing. @davetuller1.bsky.social virology.ws/2024/12/17/t...

Update to the petition: "Cochrane abandons the replacement review. Sadly, we are not at all surprised.. They are clearly influenced by some of their leaders who are well known to support the psychobehavioural view of ME/CFS." Please keep sharing and signing. www.change.org/p/cochrane-w...

Yes. Disappointing is mild. This decision is past “unscientific.” It’s actually abusive to real humans who live with the consequences of their shoddy work every day in the form of harmful “medical care.” It is some profoundly fucked up shit. And I mean that in the most professional and academic way.

1) Some background on the ongoing Cochrane saga... In 2019, several patients and researchers had pointed out flaws in the exercise review for CFS and asked these to be corrected or withdrawn.

We need all clinicians and scientists who understand that Exercise Therapy is ineffective and harmful to complain in the strongest possible terms to Cochrane and insist they withdraw the 2019 review. Cochrane have refused to listen to pwME. Now we need professionals to stand up for science.

@sunsopeningband.bsky.social just read it myself. Totally unacceptable especially since Cochrane has refused to remove the current review despite broadly documented issues Here's Cochrane's message to the authors - after no comms since February 2023 when we submitted the draft protocol.

Shocking news. Cochrane prove themselves anti science again. They have steadfastly refused to withdraw the harmful 2019 review, now this after leaving patients waiting for 5 years. Unforgivable. chng.it/zTZ7vX9Czd

These folks jumping on the #LongCovid gravy train are incorrigible. It's like whack-a-mole. Here they now pop up in Norway, recommending psychotherapy and exercise as cures for what they refer to as "so-called" Long Covid Science deniers, basically #MECFS