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

Very good. Thank you Hilda.

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/...

Thank you Katharine. That's a really helpful response to a dreadful article.

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 🧪

There are more factsheets to come. This one is meant to be a brief introduction to what ME/CFS is.

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...

Given that we don't know what's in the plan, how can we know whether it should be funded? If it's more BACME led nonsense, I don’t want it. If it's a radical plan for consultant led clinics, and NICE compliant care, then it might be worth funding. And we need high quality research, not more BPS.

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...