@sharonhodgsonmp.bsky.social Please. Take action now. These courses are far from perfect but they'd be a start.
Because as long as there's no real biomedical specialist service for #pwME, training on how to spot and prevent PEM for NHS staff is the single best thing to improve healthcare for us.
Protection from PEM should be foremost.
Making those new CPD courses mandatory would be a quick and low cost way to start.
After all, the NHS has mandatory FII training. Why wouldn't it have mandatory PEM training?
With two thirds of us permanently worse from it, PEM is a safeguarding issue.
If they commit to ensuring we’re treated with the respect that our horrific physical illness deserves then they validate it is real, and therefore become more liable to provide us with welfare support. I think this is why successive governments knowingly allow #pwME to endure a living death
We dont want anymore words from politicians pretending to care.
This ⤵️ doesn't cost a single pound.
It could be implemented TODAY.
It doesn't need any agreement or taskforce. It doesn't even create any new liability.
It just needs a decision.
There is no excuse! 😡
@sharonhodgsonmp.bsky.social
This.
In fact, Ive never seen a community so unfairly treated by the state and abused for so long behave so civil and constructive as #pwME...
They know we cannot get out of bed because otherwise...
And it shines the absolutely ignominy for gvts pretending to be leaders on welfare and social justice like 🇨🇵 🇬🇧 and 🇪🇺
Every day it passes without taking action is making this historical stain worse.
#GreatestMEdicalScandal
@sharonhodgsonmp.bsky.social
@stephanie_rist
@sant.europarl.europa.eu
Germany, like any other place in the world, has still a loooong way to go regarding #ME, but PHEW... what they have achieved politically, financially, medically, and socially (press included) in 4y for Long Covid / Myalgic Encephalomyelitis seems simply 'impossible' anywhere else.
Danke 🤝🙏💜
There's nothing else to add....
I can understand that, but I feel like it’s different with your work as it’s not a one-off event (which are obviously important too!) but you’ve helped change the narrative of an abused marginalised group for over a decade…
NEW | On an odd choice…
WHY DID BBC BREAKFAST GIVE REFORM UK A SPECIAL GRAPHIC?
A small detail in a brief report sparks some big questions about what the national broadcaster is doing during the run up to local and national elections.
brokenbottleboy.substack.com/p/why-did-bb...
@thereforme.bsky.social are you able to post about @davetuller1.bsky.social‘s crowdfunding campaign at all please?
Doesn’t seem to be the done thing to promote his work by charities (I don’t understand why, do you have insight?) but he’s so important to our community and #pwME across the world! 💙
No worries Yann! :-)
Donated
David Tuller DrPH has shown he has a:
-good skill set for this type of work
-good knowledge base from following the field closely for many years
-an appetite as it can be very draining
Proponents of exercise/psychologicalisation/etc are still around
#MEcfs #LongCovid #CFS #PwME
After Condé Nast's decision to close SELF, I spoke to chronically ill women about what the women's health site meant to them.
"We have to acknowledge chronic illness as a politically, culturally, and socially marginalized category"
Latest for @motherjones.com.
www.motherjones.com/politics/202...
If you’re able, please donate…
David is a hero!
Labour, far from supporting the NHS is destroying it. Not announcing the changes honestly but behind our backs and apparently behind the backs of the MSM who aren’t reporting it. Private healthcare is winning, we are being blindsided.
15h by Author I tried to Pace but never really mastered it, as a mom there are so many things... Then I couldn't do ANY of the things because my moderate ME became very severe ME. It is a whole other world, that I didnt even realize was a possibility! Now I'm bedridden and dependent on anyone who happens to check if my commode needs empty or if I have water or food. On a good day I can brush my child's hair. Take pacing seriously! Reply Message Hide 2
A tragic cautionary tale that was posted on my Facebook page. 😢
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
And so it goes on for #ME patients. We aren’t even called patients by many HCPs they call us malingerers, wrong thinkers and the latest ‘acquired neurodiversity.’ This testimony and plea from 2018, it could have been 1987 or 2026 because nothing changes. We just get older as we rot in our beds.
Thank you Tessa, thank you so much 💙
Thank you so much for sharing, @tessamunt.bsky.social
I'm really looking forward to sharing more on Monday 11th May (12.00-13.30 BST).
You can join us (for free) via Zoom www.eventbrite.co.uk/e/gender-aff...
@durhamimh.bsky.social @vpatton.bsky.social @literarti.bsky.social
BREAKING: We’re taking the government to court over Palantir.
The government is refusing to hand over important briefings given to Wes Streeting about the £330m NHS data contract with Peter Thiel’s surveillance firm
So we’re taking legal action.
democracyforsale.substack.com/p/breaking-w...
👏Excellent commentary to @BBCR4Feedback by Helen Gibson, @tedmonroe91.bsky.social & @nickyproctor.bsky.social
🧪 It also shows the power of @DecodeMEstudy in refuting stigmatising, outdated & false views of people like O'Sullivan.
Helen Gibson and Edward Monroe on BBC Radio 4’s Feedback challenge Suzanne O’Sullivan’s claims that #LongCovid is largely psychosomatic when she was interviewed on Amol Rajan’s podcast. Mentions #MECFS, NICE’s 2021 guidance and DecodeME genetic findings.
Important post from Dr Todd Davenport about PEM.
likeannopeningbandforthesun.substack.com/p/in-pursuit...
📰 Publié dans ICI Picardie, il apporte un éclairage essentiel sur l’encéphalomyélite myalgique (EM), en abordant plusieurs aspects majeurs de la maladie : le malaise post-effort, le sommeil non réparateur, l’errance médicale, ainsi que les risques liés à la réadaptation à l’effort pour les patients.
TRAILER: Buried Alive with M.E.
I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm.
People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death.
#pwme #millionsmissing #severeME
1/
Lotte has lived with #LongCOVID for 6 years. At her worst she spent 22 hrs a day in bed and was unable to hold a conversation. She worries about her future as the Dutch government doesn’t treat it as a priority and not enough is being done to help her take part in society again.
Screenshot of tweet
Screenshot of tweet
Screenshot of article
According to David Tuller, Prof. Michael Sharpe’s “unbecoming” comment to Carol Monaghan MP in 2018 was about “misrepresenting science in parliament”. David also reported there was nothing defamatory said in the debate.
trialbyerror.org/2018/06/25/t...
Please Help David Tuller @davetuller1.bsky.social , Our Champion!
crowdfund.berkeley.edu/project/49720
Image is from the AMMES April 2026 newsletter
#MEcfs #PwME #LongCovid
Governments don’t like to acknowledge Long Covid or ME/CFS being real because then the not only need to fund research and medical care but also social support. It’s a worldwide human rights crisis and it has been for decades.
