Thank you. How much longer can this go on?!
We will never forget them. ❤️
#MemorialMonday
Module 3, UK Covid Inquiry
12 September 2024
Remembering this short snippet from Dr B Jones, Chair of Covid Airborne Transmission Alliance
“We absolutely concur with Prof. Beggs’ expert opinion, particularly on the definition of aerosols and droplets which we regard as absolutely critical..”
1/
The Enclosure Acts allowed fencing of common lands that villagers had used for generations. Something similar has happened in the digital space.
Well, yes.
You’ve moved away? I’m sad you felt you had to do that.
Well, I hope they have done the nhs modules, but the stats suggest hardly anyone has. Seems like someone needs to check out whether they are doing it, given it’s a written commitment l. (I’m not suggesting that should be you).
Thanks. Useful!
How do you explain Sweden? Is it just the lack of austerity? (Good to see you here, btw!)
Sarah do you know if they have made the progress they promised? P5-“Training for the Community Matrons, Nurses and Dieticians will be delivered
by the Community-based ME/CFS Service to support them and upskill their
knowledge of severe/very severe ME”. I’d be interested in knowing how things are now
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.
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
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.
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...
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) “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.
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:
