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Posts by Didier

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).

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

1 day ago 17 10 0 2

Monthly reminder that this is currently NOT an exaggeration or hyperbole.

This is the simple objective reality for #pwME.

#GreatestMEdicalScandal

8 hours ago 2 0 0 0

It is... it really is.

I realise how naive and conformist and even dull I was about government and medical care. #ME is an horrendous slap in the face. An invitation to seat at the first row behind the closed-door slaughtering.

#GreatestMEdicalScandal

8 hours ago 1 0 0 0

The fucking patience with all of it... 😑

21 hours ago 2 0 0 0
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Registrierung (Online-Livestream): International ME/CFS Conference 2026 Form from SeaTable

International ME/CFS Conference 2026 am 7./8. Mai – jetzt kostenlos anmelden!
cloud.seatable.io/dtable/forms...

21 hours ago 5 4 0 0

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.

21 hours ago 5 3 0 0
ME/CFS Research Foundation

The detailed agenda for the International ME/CFS Conference 2026 is out and it is just amazing. Top-notch novel research, 2 ministers, 50 researchers, focus on the hard (but needed) neuroimmunology road...

Have a look. No stone unturned! Just impressive 👏👍

events.mecfs-research.org/en/events/co...

21 hours ago 12 3 0 0
Auf einem Bild mit dunkelblauem Hintergrund steht ganz oben "Schirmherrschaft #LD26". Darunter ist ein Foto, auf welchem Prof. Dr. Karl Lauterbach auf einer Demo spricht, zu sehen. Unter diesem Foto steht "Quelle: #LiegendDemo 2024" und darunter steht der Text "Seit April 2026 ist der ehemalige Bundesgesundheitsminister Prof. Dr. Karl Lauterbach MdB, Schirmherr der #LiegendDemo 2026.
Mit diesem Engagement unterstreicht er die Wichtigkeit und Dringlichkeit unserer Anliegen.
Dies ist ein wichtiger Beitrag, um auf die Lebensrealität von Menschen mit ME/CFS und anderen schweren chronischen Erkrankungen aufmerksam zu machen.
Wir danken Herrn Prof. Dr. Karl Lauterbach ausdrücklich für seine Schirmherrschaft und die damit verbundene Unterstützung!"
Rechts unten ist das LiegendDemo Logo zu sehen.

Auf einem Bild mit dunkelblauem Hintergrund steht ganz oben "Schirmherrschaft #LD26". Darunter ist ein Foto, auf welchem Prof. Dr. Karl Lauterbach auf einer Demo spricht, zu sehen. Unter diesem Foto steht "Quelle: #LiegendDemo 2024" und darunter steht der Text "Seit April 2026 ist der ehemalige Bundesgesundheitsminister Prof. Dr. Karl Lauterbach MdB, Schirmherr der #LiegendDemo 2026. Mit diesem Engagement unterstreicht er die Wichtigkeit und Dringlichkeit unserer Anliegen. Dies ist ein wichtiger Beitrag, um auf die Lebensrealität von Menschen mit ME/CFS und anderen schweren chronischen Erkrankungen aufmerksam zu machen. Wir danken Herrn Prof. Dr. Karl Lauterbach ausdrücklich für seine Schirmherrschaft und die damit verbundene Unterstützung!" Rechts unten ist das LiegendDemo Logo zu sehen.

🔸️Schirmherrschaft #LiegendDemo 2026🔸️

Seit April 2026 ist der ehemalige Bundesgesundheitsminister Prof. Dr. Karl Lauterbach MdB (@karllauterbach.bsky.social), Schirmherr der #LiegendDemo 2026.
Mit diesem Engagement unterstreicht er die Wichtigkeit und Dringlichkeit unserer Anliegen.

1 day ago 33 14 1 0

- some long term DMT used already in #MS (from b-cell therapies like daratumumab, belimumab or inebilizumab, to newest t-cell like foralumab and rapamycin).

2 days ago 4 0 0 0
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My take is that we will obtain probably similar (unconclusive) results exactly like for #MS?
IA/plasmapheresis during 5 days it's a start but too short, bazooka style?

Other trials would love to look fwd:
- car-t (cd19 generic, the same we have used for any other experiment in autoimmune)...

2 days ago 5 0 1 0

La liste impressionnante des actions et rassemblements organisés dans toute l'Allemagne par le collectif @liegenddemo.bsky.social autour de la journée internationale de sensibilisation à l'EM.
#MEawarnessDay #MECFS #12mai

2 days ago 10 7 0 3

+ @srist.bsky.social

2 days ago 2 0 0 0

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

2 days ago 5 2 1 0

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 🤝🙏💜

2 days ago 12 3 1 1
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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

5 days ago 18 12 0 0

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...

2 days ago 20 7 0 0

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.

3 days ago 23 13 0 0
Video

Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018

“It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”

3 days ago 40 19 2 2

David Tuller is a journalist/researcher who has written a lot of valuable analyses on the PACE trial and psychosomatic approaches to ME/CFS and Long Covid.

He has, for example, pointed various flaws in research on exercise and CBT.

You can support his work here 👇

4 days ago 25 11 1 0
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This is interesting for physios.

👀👇

4 days ago 10 6 1 0

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

3 days ago 11 2 1 0
Clinical care guide for managing ME/CFS and Long COVID, A Decade of Expertise offering patient guidance.

Clinical care guide for managing ME/CFS and Long COVID, A Decade of Expertise offering patient guidance.

Over a decade of clinical expertise, distilled into one guide. BHC’s Clinical Care Guide is a practical roadmap for navigating ME/CFS, Long COVID, fibromyalgia & related conditions. Free to download, free to share. 💙 

Download: https://bit.ly/4jScKFu

#MERC @openmedf.bsky.social.

6 days ago 22 11 0 0

Did you know that ~70% of first-year medical students use Anki flashcards to study for their medical exams?

We created an Anki flashcard deck for infection-associated chronic illnesses, including #MECFS, #LongCOVID, #POTS, #MCAS, #hEDS, & more.

Great convo & links! - www.reddit.com/r/medicalsch...

4 days ago 69 35 3 0

I’ve been waiting for 33 years for any treatment for #ME, unable to work, leave the house, see people. The Delivery plan for ME has been shelved. There are many thousands of us in a similar position and when we are strong enough to be, we are very, very angry.

4 days ago 28 7 0 1

The amount of damage that Simon Wessely has done with his bullying psychosomatic bias (not just for ME, but Gulf War Syndrome & other devastating illnesses) is truly incalculable. 🤬

(The quote below is from the 1990s… the absolute arrogance & hubris! 😒)

#MyalgicEncephalomyelitis #mecfs #SevereME

4 days ago 14 5 0 0
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1) Re-reading some ME/CFS history: in the late 1990s the CDC diverted millions of dollars budgeted for
ME/CFS into work on other diseases.

The CDC presented misleading data to Congress, a whistleblower was needed to uncover the misuse of funds.

4 days ago 61 28 4 3

“What ME/CFS research has surfaced slowly over time is something that medicine is still in its infancy in understanding: what happens after exertion, the biology of recovery. And the data in ME/CFS are now too coherent to dismiss.”

4 days ago 19 6 1 0
Preview
In Pursuit of Understanding the Crash What Post-Exertional Physiology Tells Us About ME/CFS

If you’re going to read something today, let it be this! #PEM #MECFS

likeannopeningbandforthesun.substack.com/p/in-pursuit...

5 days ago 15 7 0 0

@tessamunt.bsky.social more evidence of systemic harm by our lovely government.

5 days ago 8 3 0 0
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Un jour on fera un fil sur Ranque, Lemogne et consorts, les idéologues 🇫🇷 de la psychologisation de l'EM, et depuis 2020, du CL.

En attendant, vous pouvez lire cet article en français
"Appeler un chat un chat". doi.org/10.1016/j.re...

TW : gaslighting médical, psychologisation, junk science 🚮

5 days ago 13 7 1 0