Fun fact: #ME is not even NAMED in the list 😂
I mean, there is lack of prestige and then there is us ☠️🤡 We don't deserve an entry even when studying 'desprestiged' conditions.
I mean, some days, all you can do is laugh at how ridiculous the #GreatestMEdicalScandal is.
BBC highlights criticism of claims from neurologist that Long COVID is psychosomatic; and debate over "functional somatic disorder" in Frontiers in Medicine
virology.ws/2026/04/21/t...
Poster showing a video camera on a tripod with text “BBC Lifeline Appeal – Airing Sunday 26 April.” The Action for ME logo appears in the top right, and a Lifeline logo with two reaching hands is at the bottom.
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🚨 ME on the BBC
We are delighted to have been selected for a BBC Lifeline Appeal - a unique opportunity to increase understanding of ME and share the voices of the ME community across national TV!
#pwME
⬇️
Six years of being ignored.
Yesterday that changed...
Four CVF members set the record straight.
Starting with @larawong.bsky.social sharing our official statement:
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And Sarah Steven explains the struggles her family went through whilst trying to access antivirals in a broken system.
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Next, @shannonleebanks.bsky.social shared her personal story involving her damage from the AstraZeneca vaccine, and her ongoing - unaddressed - high risks.
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Many of us Clinically vulnerable have had to give up jobs we loved. I have had to give up performing and I love music so much. It’s been absolutely crushing not having good access to antivirals and vaccines. Labour has removed more as time has gone on which went against WHO advice.
Yes everyone should be concerned about the state of the social care sector in general. Even those supposedly delivering the highest level of care (CHC funded) are frequently not trained or safe enough from what I hear from people needing care. Abusive staff are not removed due to shortages.
We have been left without adequate protection with an airborne virus in constant circulation. What are you going to do @teamlabouruk.bsky.social
And they will take their frustrations and stress out on their clients, whether they mean to or not. People cannot care well when they are marginalised and struggling themselves.
Have you got #ME/cfs- could you tell your story? Do you remember... Doctorstold you exercise was harmless - yet it made you worse? You couldn't get the rest. help, or benefits you needed because no-one believed you? You finally got a referral only to be told your post-viral illness was psychological or FŃD? What all that did to your marriage, children. family. friendships. career. sanity & health? @MEownersclub Did you know... The University of Edinburgh proved in 2025 that #MĚ is organic, genetic. hereditable, disease? The doctors' pay rise cost £3pn. but no money could be found for #ME clinics. or research to re-purpose drugs? A patient group has crowdtunded to pay medical negligence lawyers to take action against the government? Telling your story could contribute to this legal action and help bring life-saving change? DETAILS BELOW...
Write your story by answering the six questions in the second box and send it to - admin@justice4me.uk
Thank you
#ME #POTS #PEM #MedicalPrejudice #MedicalNegligence
Can you go to your Facebook post and respond there too? Various people are asking questions.
Thank you that is reassuring. So will direct quotations be used in the case? Or is it just to show that there’s a background need? I’m struggling to know how to not describe very unique specific details to demonstrate risks, but you say the named consultant won’t ever see/hear this?
Sarah can you give more information on confidentiality and how this will be used? Thank you
Élaina Gauthier-Mamaril and Daniel P Jones respond to a recent Polyphony essay exploring the access difficulties of wearing face-masks.
thepolyphony.org/2025/06/02/m...
Last month I had the galactic honor of a lifetime to share remarks at Alice Wong's Celebration of Life. Today @thesicktimes.org published an extended version—which share how @sfdirewolf.bsky.social wielded Disability Justice to deliver #LongCovid advocacy's best moment (yet). /1
Durham University: 'Gender, affective injustice & ‘the greatest medical scandal of the 21st century'
'Katharine Cheston discusses the treatment of people with ME and its wider implications in terms of affective injustice in healthcare'
May 11th
www.durham.ac.uk/research/ins...
I wonder how she’s doing now. I hope there’s an update soon.
And equally they're unable work on a potential service for the very severe til next year "due to NHS England being abolished".
Funnily enough that doesn't prevent them from working on a template service for the mild.
They're basically redecorating the living room while the bedroom is on fire.
I’m not sure it applies to anyone anymore, but yes, pwME do need to take legal action. It would be a very unequal battle from the off, for all sorts of reasons. I’d like to live to see the day, then the slate could be wiped clean, and we could really start to save some lives.
That’s grim, but as I expected. I’m not sure how we are supposed to trust medical evidence and practice on any subject/condition once we’ve seen them cling to this BS (and droplet ideas re covid spread). Ugh.
I haven’t read your leaflet (I might have before and forgot!) but I’m interested to know how the RCGP responded to ME and PEM? Given they officially criticised the NICE guidelines update for ME in 2021 what’s their current position?
I agree. As a long term ME patient I can say almost 100% of doctors do not really know what PEM is, even if they have heard of the concept. They still think “fatigue” not “fatiguability”, nor “neuro-endocrine-immune flare” nor anaerobic thresholds, brain-body shutdown etc.
Really important article, even if you don’t know the actors. When will reality be acknowledged?
🤣 Good place for a sky burial…
Yes. We found it hilarious that they were lugging her up the hill to die on a rock but would have to turn around again (also carrying the brother back) and it just seemed hilarious. My partner was like “she’ll be a dead weight on the way back” It was all daft!
Yes I completely agree.
I love the sharpness and the mouth!
Art in progress, ink lines on white paper shows a person holding embroidery scissors the same size as them, holding the round handle like huge eyeglasses peering through with a smile made of running stitch. Sharp dotted wedges dagger towards them in the background.
Latest series of work is me morphing with crafting. Feeling all needled and threaded. Sneak peek of me being a bit snippy. Don't run with scissors! Especially if they're as big as you. #Art #Artist #Crafts #Sewing #Thread #Yarn #Happy #Identity #EveryDayObjectify
Interesting. I’ve also experienced that midodrine lowers HR a lot but that I’m not particularly worse overall without it. Not at the moment anyway. (I have ME and POTS, not LC)
