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Didier

@medidier.bsky.social
563 followers 912 following 1.3K posts

ME after covid infection Feb'22. Bedbound. 🛌 #ThereForME #GreatestMEdicalScandal #PEM 🇬🇧🇲🇫🇪🇦🇧🇪

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Adam @abrokenbattery.bsky.social · 13/10/2026
“The indifference is just unbelievable. It’s just incredible how people have shut their minds to the terrible suffering that’s going on.” George Monbiot on what needs to change for people with #MECFS, and the need for more advocates, journalists and politicians to speak up.
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Didier @medidier.bsky.social · 13/10/2026
😵😒😒😒
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Didier @medidier.bsky.social · 13/10/2026
"(...) the modules have been accessed by 650 from a diverse range of people" (meaning: including families, so even fewer doctors) And he writes this with a straight face and says things are going "good". They are even refusing to acknowledge a simple (horrendous) objective numerical assessement.
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The Guardian @theguardian.com · 13/10/2026
Women ‘more likely to be told autoimmune conditions are psychological’
theguardian.com
Women ‘more likely to be told autoimmune conditions are psychological’
Cambridge University study suggests stark gender divide in misdiagnosis, with women also waiting longer for treatment Women with autoimmune conditions are up to 74% more likely than men to be told their symptoms are psychological or psychosomatic, and face much longer waits for a diagnosis and treatment, a study suggests. Hundreds of millions of people – about one in 10 globally – are affected by autoimmune conditions, which can cause a range of health issues including fatigue, muscle pain and rashes. Continue reading...
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Didier @medidier.bsky.social · 12/10/2026
🫨 fascinating. Thank you!
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ME/CFS Science @mecfsscience.org · 12/10/2026
8 ) So this once again confirms that the DecodeME data points to neurons in the brain with a potential role for medium spiny neurons (or cells and other processes that look like it). More data and analysis here on S4ME:
s4me.info
A comparative atlas of single-cell chromatin accessibility in the human brain, Li et al, 2023 | Science for ME
Abstract Recent advances in single-cell transcriptomics have illuminated the diverse neuronal and glial cell types within the human brain. However, the...
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Adam @abrokenbattery.bsky.social · 11/10/2026
“I can’t even get dressed by myself anymore or press buttons or things like that.” 9 year old Annabelle describes the impact of #MECFS which she developed following Covid, and how exertion can make her symptoms worse. #LongCovid
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Didier @medidier.bsky.social · 11/10/2026
Nice surprise (cont.) 👍 Thanks for sharing @tomkindlon.bsky.social as always!
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Alem Matthees @alemmatthees.bsky.social · 10/10/2026
(1/2) @mecfsscience.org wrote an interesting series of articles about the dark history of psychosomatic medicine including peptic ulcer, rheumatoid arthritis, heart disease, cancer, schizophrenia, autism, diabetes, epilepsy, asthma, and multiple sclerosis. A worthy addition might be tuberculosis.
mecfsscience.org
All blog posts in the category psychosomatic medicine - ME/CFS Science
All blog posts in the category ‘Psychosomatic Medicine’ can be found here. Read about the influence of psychosomatic medicine on the illness ME/CFS.
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womensartbluesky.bsky.social @womensartbluesky.bsky.social · 11/10/2026
Mitjili Napurrula is an Indigenous Australian painter from the Northern Territories #WomensArt
Colourful painting with stylised repeated leaf morifs, dots and orher significant forms on a white background
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Didier @medidier.bsky.social · 11/10/2026
Yep. A classic. I think we have known this for at least 5 years? (And any patient since day 1 of getting sick and moving into the toilet).
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valebodi.bsky.social @valebodi.bsky.social · 08/10/2026
Patients with ME or post-covid are often so sick that they cannot leave their homes. That is why they hardly participate in scientific research. Dutch doctors & researchers are now driving a laboratory bus to reach them: 'This experience is indescribable.' by Ellen the Fisherman #ME/CFS #pwME
archive.ph
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The Sick Times @thesicktimes.org · 09/10/2026
Long Covid Superheroes showcases the bravery of asking for help, resting, and being compassionate with yourself and others. Read more from @heatherhogan.bsky.social: thesicktimes.org/2026/10/05/k...
The cover of Long COVID Superheroes features illustrated kids in pajama-capes holding hands and drifting through the air. The text reads “The Sick Times. Kids with Long COVID co-created their own superhero comic book. By Heather Hogan. Arts & Culture.” An illustration of Joy Explorer, a superhero with Long COVID using a wheelchair. The text reads "Unlike Marvel-style superheroes who possess superhuman strength, invincibility, and rugged individualism, these superheroes showcase bravery by asking for help, resting, and being compassionate with themselves and others. For example, Joy Explorer, created by Sophia, uses her Joy Vision Goggles to locate small joys that keep her going. Nebuli, created by Lucy, generates pocket universes to escape the boredom of being housebound."
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Didier @medidier.bsky.social · 09/10/2026
A nice surprise 👍
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 09/10/2026
Required reading for doctors, journalists, & anyone who cares about anyone w/ ME or Long Covid ⬇️ Includes excellent history of #GreatestMEdicalScandal & how the ignorance of doctors re #MECFS is continually renewed through informal (mis)training + biased media www.sciencedirect.com/science/arti...
sciencedirect.com
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Didier @medidier.bsky.social · 08/10/2026
Totally. Approaching 2027 and still so many studies that mention PEM (at best...) but keep failing to properly mention and stratify #pwME in the cohorts... :( for me it's still hard to comprehend we are still discussing this... #stigma #longcovidME
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Didier @medidier.bsky.social · 08/10/2026
No matter how many times studies demolish this belief scientifically. You will not hear a single one of those that harmed and pushed for GET for years publicly apologise or rectify. Lack of accountability at its max expression.
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Didier @medidier.bsky.social · 08/10/2026
Makes sense based on how ME also feels for me since the beginning. It neither feels like 100% autoimmunity (allergic/mcas reaction, cns damage, etc), nor 100% like a weak immune system (similar to immunosuppression I guess)... Don't know what that tells us though?... Tx for sharing as always! 🙏🫂
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valebodi.bsky.social @valebodi.bsky.social · 07/10/2026
regulation of CNS antigen-specific immunity and exhibit features consistent with cytotoxicity. These findings redefine MS risk as the combined consequence of autoreactive immune expansion and failed immune control.
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Tom Kindlon @tomkindlon.bsky.social · 07/10/2026
New CDC study Characterizing Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Symptom Burden, Functional Impairment, and Comparison With Adults www.jpeds.com/article/S002... #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Objectives
To characterize the clinical, functional, and educational characteristics of adolescents with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and compare selected illness domains with adults in the Multi-Site Clinical Assessment of ME/CFS (MCAM) study.
Study design
Baseline cross-sectional data from adolescents aged 10–17 years enrolled in MCAM were analyzed. Standardized measures included the Short Form-36 (SF-36v2), CDC Symptom Inventory (CDC-SI), Multidimensional Fatigue Inventory (MFI-20), and selected domains of the DePaul Questionnaire. Descriptive statistics characterized the pediatric cohort and bivariate analyses compared adolescents with adults enrolled in MCAM.
Results
Forty adolescents (mean age 15.3 years; 52.5% female) were included. Mean illness duration was 4.0 years. Educational disruption was substantial: 64% received homebound or homeschool instruction, 89% missed school because of illness, and participants missed a mean of 10.8 school days during the preceding month. Physical health-related quality of life was substantially impaired. Persistent post-exertional malaise (PEM), unrefreshing sleep, fatigue, and neurocognitive symptoms were common. Compared with adults (n = 595), adolescents had shorter illness duration and better physical functioning, vitality, and social functioning, whereas mental health scores were similar. Adults reported greater burden across several physical symptom domains although many between-group differences were small.
Conclusions
Adolescents with ME/CFS experience substantial multisystem symptom burden, impaired physical functioning and educational disruption. Many core clinical features were similar to those in adults, supporting the need for early recognition and appropriate clinical and educational support.
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Niko Suvisto @nikosuvisto.com · 07/10/2026
There is this project to create an image bank of photographs of very severe ME patients for a gallery on MEpedia. I’m not personally involved in this, but I thought I’d share it here because this is an important idea. lcmedata.org/severephotos
lcmedata.org
Photo gallery of very severe patients - photo submission
Submit your photo for inclusion in the MEpedia photo gallery of very severe ME patients.
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Didier @medidier.bsky.social · 07/10/2026
In my own limited individual experience (n-1) this is also absolutely central in how I "feel" before and after getting #ME. Yes: mcas, virome, microbiome and everything in btw triggers a self-injury in cns, but there is also clearly a change about the immune syst in more general terms.
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ThereForME @thereforme.bsky.social · 06/10/2026
Inside ThereForME Update No. 36: George Monbiot's Guardian piece about what has changed for people with ME since the 2021 NICE guideline, and our letter in response Policy watch: Scotland's implementation gap, and Burnham’s national care service plans PLUS...
ThereForME Update #36, 06.10.26. From the Guardian to Holyrood: ME in the spotlight. ME in the press. Policy watch: Scotland & social care. ME & Long Covid research.  Subscribe to receive updates on our work & other developments.
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Didier @medidier.bsky.social · 06/10/2026
I think every #pwME (from LC or before) has experienced the trauma and sheer surprise and shock of realising you are left to rot. But one thing I will never get my head around is how the indifference remains intact despite being an illness that chains children to a bed, in worst hell imaginable.
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
You can read the paper (open access) here: www.sciencedirect.com/science/arti...
sciencedirect.com
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.
Screenshot of the header of a published paper: 

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands
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sarah boothby @swastrosarah.bsky.social · 05/10/2026
www.youtube.com/watch?v=fL4p... #pwME #LongCovidME highly recommend you save this presentation to your records. It is one of the most succinct descriptions of the disease process, packed with current international data, and full of promise based on almost 20 years of clinical experience. 🙏 Ron Davis
youtube.com
Carmen Scheibenbogen, MD, PhD, Charité University, Berlin
YouTube video by MECFS Collaborative Research Center at Stanford
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Jon Douglas @atranscendedman.bsky.social · 05/10/2026
UCSF, 996 participants. In lupus, antibodies against YTHDF2 also bound EBV’s BZLF1 lytic protein, with competition assays showing stronger binding to the viral peptide. This supports EBV molecular mimicry as a route into autoimmunity. www.biorxiv.org/content/10.6...
biorxiv.org
Longitudinal linear-epitope profiling of SLE identifies novel antigens associated with disease and disease activity
Systemic lupus erythematosus (SLE) is the prototypical systemic autoimmune disease defined by the production of autoantibodies directed against diverse self-antigens. Antinuclear antibodies (ANA) are ...
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Adam @abrokenbattery.bsky.social · 05/10/2026
“I haven’t done things like showering for over a month now.” 39 year old Caroline describes the isolation of living with severe #MECFS and #POTS, spending almost 24 hours a day in bed and needing help with basic everyday activities.
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Didier @medidier.bsky.social · 05/10/2026
Merci encore x l'itw et pour tout ce que vous faites!!!! Ça donne des idées et plein d'envies :) je me sens tjrs triste et un peu coupable de pas pouvoir faire plus...
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Didier @medidier.bsky.social · 05/10/2026
100%! Je partage! Pas idéal, mais des enseignements clairs. J'y ajouterais un dernier élement qui me semble absolument fédérateur? des figures visibles politiques de premier ordre droite comme de gauche dénoncent, parlent et s'activent sans AUCUNE AMBIGUITÉ pour l'EM! Ça légitime et brise le tabou ✅️
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Comprendre l'EM @comprendrelem.bsky.social · 04/10/2026
Sans idéaliser la situation en Allemagne, saluons la vivacité des organisations de personnes avec EM et CL ! @emptystands.me @liegenddemo.bsky.social @mecfsresearch.bsky.social @nichtgenesen.bsky.social @berlin-buyers-club.bsky.social 🤩
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Comprendre l'EM @comprendrelem.bsky.social · 04/10/2026
- Les "LiegendDemo" (manifestations allongées), massives et bien coordonnées à travers toute lAllemagne - Le travail de fond de la ME/CFS Research Foundation - Le mouvement NichtGenesen ("pas guéri", à propos du Covid Long) Et... une vraie synergie militante entre mouvements Covid Long et EM !
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Didier @medidier.bsky.social · 04/10/2026
Et la grande qt: comment copier le "succès" allemand? Pourquoi malgré l'ère digitale certains pays sont encore au Moyen-Âge concernant l'#EM (france) lorsqu'on a des histoires comme celle-ci juste de l'autre côté de la frontière?
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Didier @medidier.bsky.social · 04/10/2026
Super intéressante itw avec @emptystands.me par @comprendrelem.bsky.social comprendrelem.fr/blog/intervi... (en deux parties). Boîte à outils, souhait que d'autres initiatives nationales s'organisent de façon autonome...
comprendrelem.fr
Fans de foot pour l'EM : les actions et le succès d'Empty Stands - Comprendre l'EM
Empty Stands est une association allemande de fans de foot avec EM, Covid long ou syndrome post-vac. En première partie d'interview : la création du groupe, leurs actions et leur succès.
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Katy B @katybrc.bsky.social · 04/10/2026
"Based on the current evidence, we can say that #ME appears to be a distinct disease – with its own genetic profile. We have not seen any genetic overlap with mental health conditions."- @cgatist.bsky.social @decodemestudy.bsky.social #MedSky 🧬 ⬇️ scienceillustrated.com/health/peopl...
scienceillustrated.com
People with chronic fatigue have been misunderstood for decades: reputable researcher offers surprising advice to those struggling with the illness
Chronic fatigue syndrome has often been overlooked by doctors and researchers. Geneticist Chris Ponting has revolutionised our understanding of the disease – and he has a remarkable message for those ...
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Adam @abrokenbattery.bsky.social · 04/10/2026
My #MECFS Scandal explainer has just hit half a million views on YouTube. I remember worrying that 27 minutes was too long and nobody would watch it. I never expected it to get so many. Thank you to everyone who shared it! Here’s the trailer 👇
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Ralf Wittenbrink @ralfwittenbrink.bsky.social · 02/10/2026
Long COVID-Studie aus 🇩🇪: Auch vier Jahre nach SARS-CoV-2-Infektion hohe anhaltende Krankheitslast - von den Teilnehmern mit Long COVID im Jahr 2021 hatten 77,4 % auch 2024 noch Long COVID Diese Studie bietet eine der längsten Post COVID-Längsschnittuntersuchungen in Europa, …
Veränderungen des Post-COVID-19-Zustands (PCC) zwischen der ersten (Juli–August 2021) und der zweiten (März–September 2024) Nachbefragung. PCC: Post-COVID-19-Zustand. Die Abbildung veranschaulicht die Veränderungen des Post-COVID-19-Zustands (PCC) zwischen der ersten (Juli–August 2021) und der zweiten Nachbefragung (März–September 2024) und zeigt persistierenden PCC, neu aufgetretenen PCC, Genesung und den Verlust der Nachbeobachtung. Teilnehmer, die als „Verlust der Nachbeobachtung“ kategorisiert wurden, haben die zweite Nachbefragung nicht abgeschlossen.
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George Monbiot @georgemonbiot.bsky.social · 02/10/2026
@davetuller1.bsky.social, a great champion of patients, interviewed me about the massive, ongoing scandal of the neglect, abuse and mistreatment of people with ME/CFS www.youtube.com/watch?v=Maae...
youtube.com
Interview with George Monbiot about Guardian column on ME/CFS
YouTube video by David M Tuller
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 02/10/2026
Thanks @thereforme.bsky.social! There must be serious review of the government’s inadequate response to #ME, with its cost to us all. Still considering best options to call for including @georgemonbiot.bsky.social proposed public inquiry, Select Committee Inquiry, a Czar or even referral to HSSIB.
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Alem Matthees @alemmatthees.bsky.social · 30/09/2026
Those with #MECFS who do *not* "look" fine are often treated like garbage too, because more ill often means more to blame. Many doctors who believe ME/CFS exists only accept a certain degree of disability, beyond that is then assumed must be due to personal issues rather than the illness itself.
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IrsiCaixa @irsicaixa.es · 30/09/2026
🗞️ Notícia: f.mtr.cool/8ro16pqakl ✍🏼 Informe: f.mtr.cool/mxai4wlkiw
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Didier @medidier.bsky.social · 30/09/2026
Això està francament MOLT BÉ!!!! 👍👏👏👏👏👏 gràcies i enhorabona a tots els implicats/es i a @irsicaixa.es per mirar on ningú vol mirar. El informe és 🔝 @reicop.bsky.social @asociacionpem.bsky.social
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nervbueddel @nervbueddel.eurosky.social · 29/09/2026
Wenn es um @emptystands.me und #ME/CFS geht, hat der HSV meine Unterstützung.
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Didier @medidier.bsky.social · 29/09/2026
This should have been a no brainer from the gvt and nhs last year with the 'delivery plan' (i.e the 'shut up and die already' plan)
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Eleanor Fielding @meownersclub.bsky.social · 29/09/2026
Make the NHS modules on #ME compulsory instead of voluntary c.org/TGcmGtvN98a
c.org
Sign the Petition
Make ME/CFS learning mandatory for NHS staff
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Didier @medidier.bsky.social · 29/09/2026
Obviamente 0 mención a los miles de casos nuevos a raíz del covid. Y los acrónimos (totalmente anticuados científicamente) de 'fatiga crónica' y 'sensibilización central' siguen por todas partes... Q paciencia... la nueva directora es la Dra Tamara Rodríguez, ojalá ponga al día todo esto...
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Didier @medidier.bsky.social · 29/09/2026
Pero vaya, en la web, aunque claramente la definen correctamente como puramente biológica, siguen sin haber actualizado errores gravísimos, como que 'hay tipos de personalidad propensas' o en el tratamiento hay versiones edulcoradas de CBT y terapia física... 🫣🤦‍♂️🤦‍♂️🤦‍♂️🤦‍♂️🤦‍♂️🤦‍♂️🤦‍♂️🤦‍♂️🤦‍♂️ enfin serafin. 2026.
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Didier @medidier.bsky.social · 29/09/2026
Cc @asociacionpem.bsky.social
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Didier @medidier.bsky.social · 29/09/2026
El Clínic refuerza su estructura asistencial con nuevos jefes de Servicio y la creación de nuevas Unidades Funcionales share.google/am0DZmUkBjN7...
share.google
El Clínic refuerza su estructura asistencial con nuevos jefes de Servicio y la creación de nuev
El Hospital Clínic Barcelona ha aprobado diversos cambios en su estructura asistencial con el objetivo de continuar evolucionando hacia un modelo organizativo más transversal, eficiente y orientado a ...
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