Katie As

IMAGE DESCRIPTION: An image of a research laboratory with a circular image of Danny Altmann, Professor or Immunology at Imperial College London. Title: Rosetta Stone Study - Summary: Three month update. The MEA and Ramsay Research Logos (bottom right)

1/3 Rosetta Stone Study - Summary: Three month update

The Rosetta Stone Study, led by Professor Danny Altmann and Professor Rosemary Boyton at Imperial College London, is a £1.2 million ME Association–funded project investigating shared and distinct biological mechanisms in ME/CFS and Long Covid.

Covid inquiry reaches ‘bittersweet’ final day of witness testimony Campaigners say ‘hard-hitting, clear-sighted and damning’ inquiry – the most expensive in history – ‘absolutely has been worth it’ * ‘A new normal’: inquiry’s key findings on how Covid changed UK society Bereaved families have marked the final day of witness testimony in the long-running Covid inquiry by saying government “incompetence, chaos and callousness is now on the public record”. Matt Fowler, co-founder of Covid-19 Bereaved Families for Justice UK (CBFFJ), urged officials to use the inquiry as a blueprint “to take brave, decisive, urgent action” and warned the country was still not prepared for a future crisis. Continue reading...

Covid inquiry reaches ‘bittersweet’ final day of witness testimony

Further dishonesty from the BBC in, again, dogmatically refusing to accept that Laura Kuenssberg spread harmful misinformation about trans people on her flagship politics programme.

@zackpolanski.bsky.social 🙏
@nataliegreenpeer.bsky.social @eddavey.libdems.org.uk @plaidcymru.bsky.social @greensagainstcovid.bsky.social

My opening submissions on behalf of Clinically Vulnerable Families are now online via the link below (the first five minutes are in the attached video). It is a privilege to speak for clinically… | A... My opening submissions on behalf of Clinically Vulnerable Families are now online via the link below (the first five minutes are in the attached video). It is a privilege to speak for clinically vuln...

www.linkedin.com/posts/adam-w...
Please listen to this opening. It’s not in our media and Clinically vulnerable children & families didn’t get the support and still aren’t on vaccines #CleanAir

And 3.9/4 doctors are also unaware, at a guess!

I can’t breach confidentiality… but I think I can say this much.

I am blown away by the change I am seeing in people’s health in the clinical setting… since C19. It’s not subtle. It’s like one of those paintings with every bright colour thrown on it.

It is very sad.

Jayme Lawson from Sinners hit the nail on the head and said how I felt with the whole BAFTAs situation.

Intro to a 1993 documentary on #MECFS

When medicine doesn’t understand an illness, patients are often mistreated. New discoveries challenge existing beliefs, but in the meantime, for those suffering, life can be a living hell.

Disabled woman put in nursing home against her will says she feels 'betrayed' Lucinda Ritchie, who has full mental capacity, was transferred from a hospital bed despite her refusal.

So much care for disabled people is rigged with indignity and lack of control but this is one of the worst I’ve ever seen: a young disabled woman moved to a nursing home against her will - literally.

Lucinda Ritchie’s power wheelchair was "switched off and pushed". www.bbc.co.uk/news/article...

Just before dawn

26th February 2026 06.48

Caroline Lucas on becoming an "end of life" doula

New Open letter to BACME by Edwards, Bull & Crawford.

Raises concerns about their ‘Guide to Therapy’:
• Speculative “dysregulation” theory
• “Active therapy” resembling pacing up/GET
• Ignoring NICE NG206 conclusions
• Risk of harm & false hope

www.s4me.info/threads/an-o...

ME/CFS Delivery Plan 6 months on

Empty words and no concrete action

Severe ME patients still being failed, Savannah’s case shows the human cost of inaction. Training uptake is feeble. Research is moving mainly through charities, not government.

www.thereforme.uk/p/campaign-u...

UK #ThereForME “Six months since the publication of the Final Delivery Plan for ME” The UK government policy paper was published on 22 July 2025. In a blog post #ThereForME summarise developments since then: “What progress has been made? Are there signs the plan is making a difference? Today we’re taking a whistlestop tour of the latest developments in three priority areas.” Blog | Plan | Thread

(UK) “Six months since the publication of the Final Delivery Plan for ME” blog post by by #ThereForME @thereforme.bsky.social

Links:
www.thereforme.uk/p/campaign-u...

www.gov.uk/government/p...

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis

I didn’t think there was an organisation behind the fundraiser?

That makes sense to me, yes.

I don’t see the problem. I assume it’s because the people running the fundraiser are being careful to avoid being seen as unreliable/untrustworthy. If more money is raised than Savannah needs, or can spend (what if she dies?) then clarity in where the money then goes reassures me.

App Usage Questionnaire - Sheffield ME & Fibromyalgia Group and ME Local Network This short questionnaire gathers experiences of people with chronic illness, using apps to help manage or track symptoms. We will produce a report about patient experience of using apps in order to pr...

The UK ME Local Network invites people with chronic illness to give their experiences anonymously of using apps to help manage or track symptoms. Please respond by Sat 28th Feb to be included in the report. A copy can be sent to you.
tinyurl.com/3et44yj8

Whilst not surprised given it’s experimental, I’m also aware BACME (and who knows who else re Royal Colleges etc) are still involved and possibly dragging their heels?

Re: The NHS module on severe ME.

When I first saw the module, I suspected that this was the reason why it was not open access, which has now been confirmed by Dr CS on FB:

I do have reservations about the content (stimulants mentioned 4 fatigue, with caveats) and perhaps this is another sign that the modules are a sloppy job made without enough patient input. But overall it IS a better resource than the others. What a mess it all is. & academic if staff don’t take it.

I think it’s really important that patients know what’s in the severe module, given the poor quality of the other two and that it seems no GP will do it without begging by a particular patient (if then but we can but try). With our history (& present) there should be full transparency. We’re adult!

I had seen the idea of redacting that section, but am a little frustrated that MEA is suggesting removing it altogether. Whilst the treatments may not be strictly researched on us yet, we are in a situ where patients have to go private for eg MCAS meds & NHS can’t even continue them when helpful.

Surely Gaza has more use for it?

Sounds great Eleanor.

Graphic with a dark, moody photograph of a red fly agaric mushroom with white spots growing in a mossy forest. The background consists of blurred, dark tree trunks. White serif text over the image reads: "Psychologisation 101: Definitions, Distinctions, and Why It Matters." At the bottom, in a smaller italicized font, it says "Long Covid Advocacy" next to a small bookmark-style logo.

🌟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

I think it’s both. Someone I know had an appointment the other week with a rheumatologist. Seemed great in person. Letter ignores decades-long ME diagnosis and reduced it to CF with “intermittent flare ups” vs constant and housebound because of ME. Pushing exercise. It’s like core belief & culture?

Are we seeing a renewed attempt to erase #ME from the all NHS systems? Has a secret decree gone out? I’m seeing more and more reports from pwME about abuse in hospitals and from specialists. The feeble DHSC plan, the disregard of NICE guidelines, endless FND diagnoses from neuros. It’s all downhill.

Just because you think people are out to get you… and all that. It seems so. The powers that be are certainly effective, I’m not sure how they do it.