A friend of mine a #pwME for 30+ years was diagnosed with early onset dementia 6 yrs ago
Her carer/husband📧me to tell me that unable to give her the care she needs she's now spending her last days in a care home
Another #pwME who never saw recognition for #ME, care or treatment💔
Aspect of care Visible disabilities (mobility, sensory loss) Non-visible disabilities (autism, chronic fatigue, dysautonomia, chronic pain) First impressions Needs legitimized immediately by physical cues Needs can be missed when symptoms are fluctuating or not easily measurable; presentations may be misattributed under time pressure or uncertainty Service adjustments Physical access (ramps, signage, interpreters) increasingly routine Adjustments such as quiet waiting rooms or pacing-aware consultations remain rare and ad hoc Data visibility Clearly coded, tracked in audits and inspections Poorly coded, rarely measured; “what is not counted is not resourced” Professional habits Seen as straightforward to accommodate Diagnostic overshadowing and premature closure more likely; stigmatizing shorthand can emerge (“non-compliant,” “difficult consultation”) unless explicitly addressed in training Patient experience Some frustration with patchy provision, but needs usually recognized Frequent reports of disbelief, stigma, and avoidance of services; risks to safety and trust How visible and hidden disabilities are treated differently in clinical practice. Evidence sources: Concepts and examples in this table are informed by literature on the hidden curriculum (1), disability-related health inequalities (4, 18), diagnostic overshadowing (16, 17), autism and primary care experience (15), learning disability registers and coding gaps (14), and system-level adjustment mechanisms including the Accessible Information Standard and Reasonable Adjustment Flag (9–12).
New:
"How visible and hidden disabilities are treated differently in clinical practice"
From:
Non-visible disability in the medical curriculum: what medicine overlooks, patients inherit
www.frontiersin.org/journals/med...
#Hiddendisabilities #invisibleillness #Invisibledisability #hiddenillness
Many Drs & HCPs still believe that the advice that Emma was given, which made her #ME so much worse, is the correct advice
They're supported in many cases by the Royal Colleges, who refuse to support the '21 @nicecomms.bsky.social g'lines for #ME
Healthcare is still unsafe for #pwME
For the #ME orgs
especially, most recently
@meassociation.org.uk
#pwME #MEAwareness #MEcfs
Hurry, hurry. Less than 2 weeks to go before the deadline for in-person registration to the Young EMERG symposium for early career researchers in ME/CFS (25th & 26th May), Hinxton Hall, Cambridge #pwME #MEcfs
Berkeley's final crowdfunder for Trial By Error has almost reached 150 donations and 25% of the goal!!!
crowdfund.berkeley.edu/project/49720
Nikki Proctor on BBC Radio 4’s Feedback says she was surprised Amol Rajan didn’t raise #MECFS with Suzanne O’Sullivan on his podcast, after O’Sullivan said #LongCOVID was largely psychosomatic, given the “backlash and criticism of her position” on #MECFS.
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...
When you aggregate the comments of various Reform UK candidates, you find they:
Hate the NHS
Hate immigrants
Hate Black people
Hate Brown people
Hate Muslims
Hate Jews
Hate women
Hate students
Hate LGTBQ people
Hate the unemployed
Hate disabled people
Hate everyone ...
But claim to love the country.
The DWP are ignoring all guidelines & acting in a way which puts #pwME at serious risk of harm
@meassociation.org.uk @meactionuk.bsky.social
@actionforme.bsky.social
Coming soon... Our book was written in community sharing our experiences of living with myalgic encephalomyelitis
In the 1930s, Oswald Mosley claimed to be a patriot, while his British Union of Fascists was secretly funded by the Italian government. We are just beginning to grasp how much of the far right in the UK today has been funded by Viktor Orbán and Russian oil money.
Their "patriotism" is always a con.
More specific link:
www.youtube.com/playlist?lis...
#MyalgicEncephalomyelitis
These people call themselves patriots. Almost invariably, they turn out to be stooges of foreign powers. goodlawproject.org/orbans-pay-c...
"I hope one of the major impacts of this
@decodemestudy.bsky.social is that people can go into clinics with the findings & wave them in front of clinicians & say
"There is an organic disease called #ME" @cgatist.bsky.social
🔗Decode M.E study institute-genetics-cancer.ed.ac.uk/decodeme-the...
Full talk: Dr William Weir - Hope4MEFibroNI - Collaboration for Change, Newry 2026
youtu.be/EjF5Unc3ZIQ?...
Dr Weir said Wessely argued “ME is simply a belief” at the 9th Eliot Slater Memorial Lecture in 1994. Link to a copy of Wessely’s lecture notes obtained by Margaret Williams
www.margaretwilliams.me/2003/prof-we...
Dr William Weir on how the influence of Simon Wessely and his colleagues created an overriding tendency among doctors to insist that #MECFS is a psychological disorder.
Clip from Hope 4 ME & Fibro NI Collaboration for Change 2026
Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS
“This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”.
Clip from Hope 4 ME & Fibro NI 2026
Link to the talk Chris Ponting Hope4MEFibroNI Collaboration for Change, Newry 2026
youtu.be/KHxzn3VFevw?...
Find out more about the study:
mecfsscience.org/decodeme-the...
Professor Chris Ponting on how findings from the largest genetic study in #MECFS show “there is an organic disease called ME”.
“We’ve had letters from GPs saying we have changed their minds”
Clip from Hope 4 ME & Fibro NI Collaboration
How medical training promotes medical gaslighting K. Johnstone Apr 11, 2026 Medical gaslighting occurs when a medical professional wrongly downplays or dismisses a patient’s symptoms. It can cause serious long-term harm: PTSD, loss of confidence in medical professionals, avoidance of needed medical care, loss of self-confidence and self-worth, and a loss of support and accommodations from family, friends and employers.
🧵
"How medical training promotes medical gaslighting" by K. Johnstone
mecfs.substack.com/p/how-medica...
This is not illness specific.
#chronicillness #hiddenillness #invisibleillness
1/
For anyone who's really feeling that it's so incredibly hard holding onto hope in the face of all that's involved in living with #ME, I'd watch this as often as you need to & let it give you hope & strength, knowing that @cgatist.bsky.social & others are working so hard for change
#pwME
Thank you so much to Hope4MEFibroNI for hosting this event in Newry last month. Talks now on YouTube: www.youtube.com/watch?v=KHxz...
www.youtube.com/@hope4mefibr... #MEcfs @decodemestudy.bsky.social
@tessamunt.bsky.social @sharonhodgsonmp.bsky.social
what #ME expert, Chris Ponting, states here is extremely important.
ME/CFS should meet the “severe and lifelong” criteria as recovery is rare: "full recovery from zero or very low labor capability around .. diagnosis leads to a total return to jobs with normal wages in only exceptional cases" www.sciencedirect.com/science/arti...
@tessamunt.bsky.social #MEcfs
That puts the annual bill at around £4 billion. That's a ratio of roughly 3,000 to 1: for every £3,000 spent managing the consequences of ME, about £1 goes towards understanding or treating it. The government itself has acknowledged that ME is an underfunded research area. And with ME rates rising since Covid, that benefits bill is only going up. Decades of the illness being wrongly characterised as psychological — something now emphatically rejected by the 2021 NICE guidelines for ME/CFS — catastrophically held back biomedical research and left patients fighting for basic recognition. But the science is finally moving, and there are finally good reasons for hope. SequenceME will sequence the entire genome of 18,000 people with ME and Long Covid — potentially the world's largest 'long-read' whole-genome study of any disease. Building on the landmark DecodeME study (which identified eight genetic signals confirming ME involves the immune and nervous systems), it could identify the biological mechanisms driving ME and point directly towards treatments. Phase 1 is funded and a pilot has successfully proven the method works. The next phase — sequencing 10,000 participants — needs £7 million, and the full study will cost £20 million. Donations to this Just Giving crowdfunder will go towards SequenceME, through Action for ME, a UK charity (Gift Aid eligible). In Norway, ResetME is a placebo-controlled trial of a drug called daratumumab that showed remarkable results in a pilot study — 6 out of 10 patients markedly improved. It's being funded almost entirely by patients and their families, because public funders won't step up and the drug manufacturer won't offer a discount. You can contribute to ResetME here - https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/english-me-fund/ The single most effective thing you can do right now is to help fund high-quality biomedical research, and encourage others to do the same
A UK man with ME is fundraising for SequenceME, a deeper look at the DecodeME samples (whole-genome sequencing study).
www.justgiving.com/page/gregsan...
Screenshot is extract from his story where he argues there has been a lack of investment in research
#MEcfs #PwME #ME #MyalgicE
