Thank you for sharing this information. I honestly had no idea how you could have done this even if you’d set your mind to it, and I was finding all the theorising about it distracting.

I knew about this (thanks to you & others) but still couldn’t prevent my mum being floxd. I was in hospital at the same time so couldn’t advocate. Daughter with ME & she’s hypermobile so high risk but was fobbed off & told it was fine. She would get an ME (mild) dx now if she sought one. 😔

I am proud to endorse this initiative, with thanks to the very many people made unwell by medical neglect of #ME who never give up, no matter how difficult it is to continue.
This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2

#pwME #pwLC

I fully support this campaign to fund legal action regarding safer management of patients.
Please donate if you are able to and share widely 🙏

Please share.
The next generation deserves so much better from the rest of us.

So, I don’t understand the IT well, but the UK civil service use VPNs to enhance security I believe.

I recently saw a person with v. severe ME/CFS write “Am I the only one here who feels at a level of disability so extreme that even the most severe descriptions l've read don't really capture it?”

That is an excellent representation of the double marginalisation faced by the most severe.

(1/2)

1) 🩸 New paper by the team of Ronald Davis.

They found that red blood cells from ME/CFS patients are slower and less responsive to low oxygen levels in a lab device that mimics small blood vessels.

I think we like the comforting notion that journals know what they're doing.

That there's a natural path we can follow to do science right, and that the "authorities" and "institutions" are following that, and that everything is working fine.

Sorry guys, but that ain't true.

Don’t worry, this will all be changed by The Plan! This nurse will opt in to the optional online training & realise the error of her ways immediately I’m sure of it!

MERUK explores research by Prof Jason's team that found that the way questions are asked in ME/CFS research can influence the responses given by participants, leading to unintentionally reinforcing erroneous assumptions that ME/CFS is psychological in nature.
tinyurl.com/48ra4adw

Patients with severe ME/CFS deserve better than unproven theories

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

Adam on X: "This is also common for Children with #MECFS. 1 in 5 parents of children face child protection proceedings because professionals don't understand or believe in the condition. Action for ME Survey 2017 https://t.co/tihLlfu5Tp" / X This is also common for Children with #MECFS. 1 in 5 parents of children face child protection proceedings because professionals don't understand or believe in the condition. Action for ME Survey 2017 https://t.co/tihLlfu5Tp

See also this post if you’re over at the other place x.com/abrokenbatte...

A very much less dramatic version of this happened to us. When I reached out to the community, it surfaced others who I’d had no idea had faced the same issue. I cannot tell you how utterly terrifying it is & how near powerless you are as a parent to protect your child. The experience has changed me

On the outdated, flawed and harmful 'current' review on exercise in #MECFS. From one of Cochrane's founder members:

"Given the Cochrane Collaboration’s reliance on their exceptional status and members, that is untenable. Not retiring influential out-of-date reviews is a ticking time bomb."

Bateman Horne Center is now on Bluesky!👏🏻👏🏻👏🏻 If you haven’t followed them yet, you can do so at @batemanhornecenter.bsky.social

Living with ME Nine people with ME reveal their unremitting struggles as they negotiate life with their illness, including their battles to be believed, diagnosed and supported.

Living with ME - the photo project from Jeremy Jeffs is here!

wellcomecollection.org/stories/livi...

Here nine people share their ME/CFS story and its impacts.

#JeremyJeffs #MECFS #Photography #pwME

ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) YouTube video by Broken Battery

New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.

youtu.be/RiwX9Y0NbiQ?...

Letter to MEA Nov 2024 If you wish to sign this letter please do so here: https://forms.gle/nzRJ8u37fV5yCJoc9 The original column by Neil Reily was published in the ME associations magazine and is available to read here: ...

Almost 1,000 (975 as of 08:30 20/11) people have signed this letter in the last 48 hours.

It's been sent to ME Association now but still time to sign until the end of the week (18:00, 25/11/24) as we will send on any more signatures we get.

docs.google.com/document/d/1...

Personally, this has taught me an incredibly important lesson, one that I wish all my fellow health journalists will take to heart, which is:

If there is a divide between what patients are saying, and what the researchers/clinicians are saying, believe the patients.

These are the patients that disappear, because they get worse under a doctor’s care, or because a doctor becomes hostile when they try and tell them it isn’t working. (ASK ME HOW I KNOW THIS.)

The biggest of thanks to our friends at @longcovidadvoc.bsky.social for standing with us on this.

People with ME/LC deserve solidarity from our advocates and we’re proud to have them behind our campaign 💙

There are a few important lessons in these two studies for those of us who are interested in studying exercise:
1. Patients will always try to do what we ask them to do, even to their overall detriment
2. If we base success on patients simply doing exercise, we will be correct most of the time
…

The thing with clinicians working with patients on “pacing” programs is they may turn into “pacing up” if you’re not disciplined about it. It shouldn’t turn into graded activity by another name. A clear understanding and expectation of the program is required for both the patient and the clinician.

PolyBio Fall 2024 Symposium YouTube video by PolyBio Research Foundation

The entire 6 hours of Polybio Symposium from last week is now up on youtube. Each talk is about 20 minutes so its a real rapid fire of findings and things they are doing next.

#longcovid

www.youtube.com/watch?v=nzwH...

Economic burden of Long Covid in the UK estimated to be >$20 billion per year from real cohort data
bmjopen.bmj.com/content/14/1...

I need to abandon the metaphor of "you can't pour water from an empty jug". It feels more useful right now to think of my fire smouldering too low for flame. Yes, I'm pretty depleted, but heat persists, the red glow dances, and I know how to tend a spark patiently. Gather kindling and breathe.

Hey y’all, I think some of you got here this way but in case you’ve not seen it, here’s a starter pack of accounts linked to Long Covid, ME/CFS and related topics, broadly construed. Hope it helps you find some friends!

Fab, so helpful, thanks

Ta! I’m starting to trawl thorough this for missing mutuals right now