@meactionuk.bsky.social @meassociation.org.uk please share to your networks. This is a genuine opportunity to influence national policy - especially on Adult Social Care and spurious Mental Health Act assessments (which are mostly led by Social Worker AMHPs).

The review is open to everyone. Provide your evidence here. Strongly recommend every family persecuted by social workers too lazy to read NICE G206 make their voices heard. www.gov.uk/government/c...

I almost cried. My professional regulator, Social Work England, is being asked by the Department of Education to prove its worth. I'm still a member but after what happened under "safeguarding" to Maeve in Devon and all that I've witnessed with other families nationwide since, it is not worth it.

Now

I wish we had a Mooch in England UK @restispoliticsus.bsky.social

Today - Thursday

#ICanCME2025 is happening this week! This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far. And please be patient with us this week if we run into any issues. 🤞💙

Join us tomorrow online at the Canadian Collaborative conference on Myalgic Encephalomyelitis (ME)! I will be talking a bit about Cognitive Dysfunction in ME and the lessons we have been learning from Long Covid research. Free registration here: icancme.ca/research/202... #ME #LongCovid

New 'Resist' design available on Redbubble. Resist with the tenacity of bindweed! Available on most merch including wall art, stickers and t-shirts. Sale on at the moment! www.redbubble.com/i/t-shirt/Re... #DisabledArtist #GiftIdeas #Illustration #Resist #Wildflowers

From my good friend Dr Asad Khan. Why do health and care professionals turn everyone taking infection control seriously into a neurotic? Why are there so many people labelled and self labelling as mentally ill?

8 ) The full interview with Dr. Missailidis was published by ME Group Australia and can be watched here:

7) He says that meeting people with ME/CFS at home and involving them in science is rewarding. The biggest challenge, however, is funding. His ME/CFS research relies largely on philanthropy.

6) Missailidis also highlights that it's important to include stakeholders such as patients and carers in research. Because of feedback from patients, they switched to using the ICC diagnostic criteria and focused more on risk management (for example, to avoid PEM).

5) Missailidis is now doing a bigger study funded by the Mason Foundation that includes immune profiling, gut microorganisms, and metabolomics. They plan to sample 100 people and have made several dozen home visits to include severely ill patients.

We're closing our Bluesky account at the end of the week 💙 Keep supporting ME Foggy Dog via X, Facebook, YouTube, and/or our e-newsletter (sign up in our website footer). The work (and adventuring) continues, and we’re so grateful you’re part of it! #pwME #MEcfs #SocialEnteprise

I cannot take your organisation seriously for as long as you treat patient safety with indifference. Dr David Strain is a danger to everyone with ME. Why is he your Medical Advisor when the only thing he knows about is self promotion? www.actionforme.org.uk/about-us/pre...

Emerge Australia Research Digest | Issue 122 emerge.org.au/researchdige... I find the audio summaries useful #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

💙 Triple Giving November (TGN) is returning! From Nov 1–Dec 2, every dollar you give to OMF will be TRIPLED (up to $500,000) to advance #MECFS & #LongCOVID research. Learn what to expect during TGN here: ow.ly/oJb550XkvOB.

"Reduced blood flow to the head during PEM may partially explain ME symptomatology. The novel in-ear device shows promise as a diagnostic and biofeedback tool, warranting further research in larger studies."

#pwME If this bears up to testing, we have an objective marker for PEM journals.lww.com/cptj/abstrac...

I know. I'd make a rubbish pwME!

@ris-law.bsky.social is there anything the #MEcfs community can do to help besides fundraising to help the #JusticeForME campaign please? Many of us could share links to info or videos etc that may be helpful. If you tell us what you need, we will no doubt try to provide! #ThereForME #UnitedForME

youtu.be/YH1wn3D9HNg?... From Bupesh Prusty's team(s). Personally, I'd drop CFS completely. The UK dataset has been badly compromised by it, putting hundreds of psychiatric patients at risk of even more clinical neglect than they've already experienced.

it's also a standalone chronic illness with a worse health related QoL than anything it's been compared to including stage 4 cancer and renal failure. QoL is so low because of PEM. Many with LC experience PEM. Most with neuro LC meet dx criteria for ME. So not unreasonable to highlight it here.

#pwME UK your Government is committed to your right to participate in public life, regardless of who you are. Disability is not, in principle, a bar. Nor is racial heritage. Justice4ME.uk

thanks to @channel4news.bsky.social for giving voice to the sexually exploited (Sky and Amanda)

So how do we test Rob Phair's hypothesis about the initial insult being at the root of the adaptive/metabolic irregularities in cellular responses? (Q&A closing discussion) Thoughts @mecfsskeptic.bsky.social ?

#pwME when researchers begin building on each others' work, we know convergence is happening and a testable theory is emerging. Hope is shining, albeit dimly, help is coming. Stay strong. www.youtube.com/playlist?lis...

Same. Donated again.

Dr Joshua Dibble explains the DecodeME study design in this presentation. Thanks to @openmedf.bsky.social and the Dafoe Davis family for the platform. youtu.be/tBKTJ5JCGdY?...

@simonmcg.bsky.social @cgatist.bsky.social please share to your networks

Before Maeve became too unwell to eat I was working up a research project with Dr Siobhan O’Dwyer which we recruited Dr Nina Muirhead to join. We wrote a rapid response to the BMJ's reporting on government’s Plan for ME. They asked us to rewrite it as a letter so www.bmj.com/content/378/... 1/3

#pwME when researchers begin building on each others' work, we know convergence is happening and a testable theory is emerging. Hope is shining, albeit dimly, help is coming. Stay strong. www.youtube.com/playlist?lis...

This was submitted February 2024! www.nature.com/articles/s41...

www.youtube.com/playlist?lis... reliable. @ashleydaltonmp.bsky.social is there any reason why we cannot learn from international research (especially when the British medical establishment has proven itself so utterly prejudiced against ME research for decades - a highlight notice is worthless 1/2

Unfortunately our media …. 🔻

also, I think, the bravery of @ashleydaltonmp.bsky.social for being willing to be held to account. I know civil servants are doing the best that can be done and, from #MaeveInquest that the lack of reliable evidence is a genuine barrier to progress, but there IS reliable evidence, of which 1/2

Just signed a letter to my reps telling them firing hundreds of people at #CDC is unacceptable. If you're so moved, I hope you will too: actionnetwork.org/letters/writ... #DoSomething

I just have to say this: Justice4me.uk is doing what nothing before has. Huge thanks to the bravery of lawyers and claimants holding government to account. The campaign understands this is a joint venture - and thank everyone involved for making it work as best it can.

POSTPONED. The good news is we now have another month to prepare. Check out @severemecymru.bsky.social to see how to get your MS involved in the upcoming debate on severe and very severe ME services in Wales. @swastrosarah.bsky.social

🙏 @vladvexler.bsky.social this describes exactly the point being made by Justice4ME.uk. 7 days left to Judicial Review of (England and Wales) UK government Final Delivery Plan for ME. @ashleydaltonmp.bsky.social we want to help you get this. www.youtube.com/watch?v=_6KS...

#ME #Disability #PEM #FanningTheFlames @meassociation.org.uk @longcovidsupport.bsky.social #Justice4ME #Plan4ME @ashleydaltonmp.bsky.social @decodemestudy.bsky.social @thelancet.com @nhsengland.bsky.social @georgemonbiot.bsky.social @davidjoffe64.bsky.social @drjoepajak.bsky.social

Please repost to other platforms if you have a presence there @meownersclub.bsky.social @tomkindlon.bsky.social @janetsylvester.bsky.social @severemecymru.bsky.social @davetuller1.bsky.social @meactnet.bsky.social

"The UK Medical Research Council recently awarded £800,000 over four years to PRIME, a partnership between Action For ME and the University of Edinburgh" www.youtube.com/watch?v=1dgK...

I just donated, again. One week to go before Judicial Review deadline. Please support these brave families www.crowdjustice.com/case/justice...

& because NHS staff have had NO TRAINING. They revert to SOPs (Standard Operating Procedures) which is precisely how #ME px are put at risk by NHS provision. Everyone relies on A&E, whether privately insured or not. There is nowhere to go that is safe for anyone with #ME in the UK. Justice4ME.uk

The most alarming aspect of the clinical knowledge summary published by NICE (May 2025) in response to #MaeveInquest (ended Oct 2024) is its perfect failure comprehend how to manage #PEM. This was the ignorance that killed Maeve. 3 years of inquiries. #MEKills #ME/cfs cks.nice.org.uk/topics/myalg...

Great News!   OCTOBER 15TH WELSH SENEDD DEBATE ON SEVERE/VERY SEVERE ME   The Welsh Senedd Business Committee has timetabled Senedd Member Adam Price’s Motion 8884 on Severe/Very Severe ME for a debate in the Chamber next Wednesday, 15th October - record.senedd.wales/Motion/8884 1/2

Tracking Shutdown Impact and Changes at PubMed There's been some panic about PubMed again, since a notice on the website warned it could be out of date because of the US government shutdown. Shutdown is dreadful, in so many ways. But that notice doesn't mean PubMed has been de-funded, or that it's…