Sign in

Didier

@medidier.bsky.social
561 followers 907 following 1.3K posts

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

PostsRepliesMedia
Reposted by Didier
Ralf Wittenbrink @ralfwittenbrink.bsky.social · 11h
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.
317279
Reposted by Didier
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
13265110
Reposted by Didier
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.
58233
Reposted by Didier
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.
26320
Reposted by Didier
IrsiCaixa @irsicaixa.es · 30/09/2026
🗞️ Notícia: f.mtr.cool/8ro16pqakl ✍🏼 Informe: f.mtr.cool/mxai4wlkiw
012
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
020
Reposted by Didier
nervbueddel @nervbueddel.eurosky.social · 29/09/2026
Wenn es um @emptystands.me und #ME/CFS geht, hat der HSV meine Unterstützung.
1194
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)
201
Reposted by Didier
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
22516
Reposted by Didier
Jon Douglas @atranscendedman.bsky.social · 28/09/2026
Hong Kong Baptist University researchers review how natural killer cells shape brain disease, from clearing virus infected cells and autoreactive immune cells to driving inflammation. The key may be targeting the right NK cell subset. onlinelibrary.wiley.com/doi/10.1002/...
onlinelibrary.wiley.com
Harnessing Natural Killer Cells: From Neuroimmunology to Novel Therapies for Central Nervous System Diseases
This review delineates the multifaceted roles of natural killer (NK) cells in the central nervous system, spanning direct cytolysis, immunoregulation, and crosstalk with the brain microenvironment. W...
163
Reposted by Didier
Chris Ponting @cgatist.bsky.social · 28/09/2026
Two signals in TMEM106B & VWDE locus. Associations affect gene regulation not protein sequence. Genome wide: the pituitary tissue is the most enriched in gene expression. Is #MEcfs genetics similar to other diseases? Yes! Long Covid and fibromyalgia have strong genetic correlations w MEcfs.
0165
Reposted by Didier
Tom Kindlon @tomkindlon.bsky.social · 28/09/2026
The Severe & Very Severe ME Research Registry has been created. It gives people with severe and very severe ME from Germany, Austria, & Switzerland the opportunity to participate in research through home visits severe-me-registry.de #SevereME #MEcfs #CFS #PwME #VerySevereME #ChronicFatigueSyndrome
severe-me-registry.de
Severe & Very Severe ME Research Registry
Das Severe and Very Severe ME Research Registry verbindet ME Schwer- und Schwerstbetroffene mit biomedizinischer, häuslicher Forschung.
16429
Reposted by Didier
James A @exeterdormouse.bsky.social · 26/09/2026
The wonderful @georgemonbiot.bsky.social has been talking on LBC about the plight of those with ME/CFS (which is often referred to informally as "chronic fatigue", and which can overlap with Long COVID). Huge thanks to him and to @natashadevon.bsky.social for her support. youtu.be/H2rRf_f2hJs
youtu.be
LBC | Natasha Devon interview with George Monbiot
YouTube video by Broken Battery
131
Reposted by Didier
Alem Matthees @alemmatthees.bsky.social · 25/09/2026
The most insane thing about this #MECFS scandal, beyond all the suffering and neglect, is that it costs hundreds of times more in economic losses every year than it would to fund the research that could eventually decrease this burden. The degree of short-sightedness involved is astounding.
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
612238
Reposted by Didier
Eleanor Fielding @meownersclub.bsky.social · 25/09/2026
The guidance isn’t clear because somewhere along the long road of the last 40yrs doctors chose prejudice over science and they really don’t want to give it up.
Out of Patients
#ME and Long Covid
The science has moved on
Clinical practice has not
#FanningTheFlames
084
Reposted by Didier
Astrid Meyer-Knutsen @astridmeyerknutsen.bsky.social · 24/09/2026
I got #ME/CFS after an EBV infection. 30 years later I still don't have access to a doctor who is knowledgeable about my illness. The situation for my patient group is if anything getting worse, not better. Read this excellent column by George Monbiot and help us break through the indifference:
25417
Didier @medidier.bsky.social · 24/09/2026
Nice one 👏
130
Reposted by Didier
Long Covid Quilter @longcovidquilter.bsky.social · 24/09/2026
“there is no effective treatment” but @georgemonbiot.bsky.social words are a lifeline. Being seen is powerful. Thank you for your continued support George. #MEcfs #covidinducedME #longcovid
1185
Reposted by Didier
Raindrops_on_Roses @kateraindrops.bsky.social · 24/09/2026
Roughly 30 years ago my then specialist would ask me to talk to his trainee doctors about being a patient with ME/CFS and fill in just some of the many gaps in their training. And I find it is so confounding that nothing has substantially changed since then.
13614
Reposted by Didier
Michiel @murtoz.bsky.social · 24/09/2026
The only thing that will move the needle is a legal precedent. Govt is fighting this hand and tooth and will deny any responsibility in this flagrant ongoing human rights violation of their own making. Their delivery plan is a farce. You can make a difference by helping crowdfund Justice for ME.
crowdjustice.com
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
141
Reposted by Didier
Natasha Devon @natashadevon.bsky.social · 24/09/2026
George will be coming on my show this weekend to discuss this very important article.
29436137
Reposted by Didier
Luise 🦊 @louise-fox.bsky.social · 24/09/2026
Thank you. Being heard and believed is so important when you usually are disbelieved or even ridiculed. Having ME/CFS and trying to get help often feels like living in a real life body horror movie with no end in sight.
0182
Reposted by Didier
Tessa Munt MP 🔶 @tessamunt.bsky.social · 24/09/2026
Thank you so much, George! Your conclusion speaks volumes, reflecting so much that I hear from #pwME.
37426
Didier @medidier.bsky.social · 24/09/2026
👋 bonjour @voxem.bsky.social @apresj20.bsky.social ! Vous n'auriez pas des idées de journalistes à qui faire circuler l'info qui pourraient partager? Moi de mon côté je pense à @johannmargulies.bsky.social et...
130
Didier @medidier.bsky.social · 24/09/2026
Hola @asociacionpem.bsky.social @reicop.bsky.social Algún@ periodista en España q tengáis en el radar para pasarles esto? 🤞🙏 A mi se me ocurren las excelentes Merche Borja (20minutos), Esther López Barceló (público) y como no @lauragderivera.bsky.social.
030
Reposted by Didier
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
With great thanks to the hundreds of people who gave me their testimonies. If I hadn't said "stop" after a few hours, it might have been thousands. The sheer scale of this scandal is hard to get your head around. 2/2
3075793
Reposted by Didier
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
17925271729
Didier @medidier.bsky.social · 24/09/2026
You will not find in 20 years a more perfect definition of what a public scandal is. This is a blatant violation of basic rights, with the added aggravation of endangering lives. Where are the lawyers???? Where is the vitriol from the media????? It's 2026. To court, already!! #Justice4ME
020
Reposted by Didier
Carole Bruce @cabruce.bsky.social · 24/09/2026
‘Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors’ @georgemonbiot.bsky.social Thank you. Thousands of us #ME patients are sending you endless gratitude . #ME www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
0345
Reposted by Didier
Alem Matthees @alemmatthees.bsky.social · 24/09/2026
(3/3) There is no competition over who is more ill, but a brief crash only glimpses what severe illness is like over the longer term as it wages a war of attrition on your health. Bonus test points if the mind could be simulated to believe years have passed with no end in sight, just like real life.
1335
Didier @medidier.bsky.social · 24/09/2026
Thank you @georgemonbiot.bsky.social The only explanation for not having more journos onto #ME must be psychological... primal fear or shame more than ignorance bc there is no injustice so scientifically undeniable, so extreme and with so many testimonies like this one. #MEpublicinquiryNOW
040
Reposted by Didier
Elke Hausmann @drelke.bsky.social · 24/09/2026
Thank you @georgemonbiot.bsky.social for an article that really gets to the heart of what is going for people with #ME and #LongCovid and how we are being treated, by the #NHS, by politics, by the media (with notable exceptions in all areas) 1/3 www.theguardian.com/commentisfre...
To find out what this neglect looks like in practice, this week I put out a call on Bluesky asking people with ME/CFS about their recent experiences of treatment. I was immediately inundated with horrifying testimonies. "I've just been completely abandoned"; "a 10-year waiting list for treatment"; "we've given up seeking medical support"; "stuck in limbo";
"I just felt utterly unheard, invalidated".
• I've
been sent hundreds of shocking and heart-rending accounts.
14113
Reposted by Didier
Alem Matthees @alemmatthees.bsky.social · 23/09/2026
For the love of the universe and the sake of millions of people with #MECFS and #LongCOVID can some funding body please fund the rest of #SequenceME / LC already?! WGS is one of the greatest crowning achievements of science and has enormous potential for pointing the compass in the right direction.
actionforme.org.uk
Sequence ME & Long Covid
SequenceME & Long Covid is a major new whole-genome sequencing study to understand ME and Long Covid.
05726
Reposted by Didier
Michael Stingl @neurostingl.bsky.social · 23/09/2026
Meine Inbox/Ordination jeden Tag. Der Umgang mit #MECFS ist eine Katastrophe.
18021
Reposted by Didier
Lucibee @lucibee.bsky.social · 22/09/2026
NICE guidance NG206 is actually quite explicit. It says: "DO NOT offer people with ME/CFS ... any therapy based on physical activity or exercise as a cure for ME/CFS; ... or that uses fixed incremental [small, ie 10%] increases in physical activity or exercise, eg, graded exercise therapy" 🤦‍♀️
23516
Didier @medidier.bsky.social · 22/09/2026
Factual reminder that just shows how utterly and uniquely ridicule the situation is: you have as many people with #ME than #MS. The difference is that #pwME do not "exist" socially or medically. It's a simple as that. #GreatestMEdicalScandal
050
Didier @medidier.bsky.social · 21/09/2026
Really interesting read in last entry from @cortjohnson.bsky.social, thank you as always! 🙏 www.healthrising.org/blog/2026/09... Timeline very uncertain though (as usual depending on clinical/research will to move things forward)... 3 years (at best).
healthrising.org
IVO-21 - A Paradigm Changer AND a Mitochondrial Drug for ME/CFS? - Health Rising
Could a new mitochondrial drug called IVO-21 be the answer to the energy problems in ME/CFS, fibromyalgia, and long COVID?
153
Reposted by Didier
Alem Matthees @alemmatthees.bsky.social · 19/09/2026
A persuasive statement from Sarah Boothby @swastrosarah.bsky.social about the apparent necessity of legal action such as #JusticeForME to help overcome the decades of inaction/stonewalling and to 'keep the bastards honest' (a phrase used in Australian politics). www.crowdjustice.com/case/justice...
"Why we are no further on than before Maeve died makes me feel I have been lied to by everybody I thought I could respect. Unlike the many other families facing what we went through, I now have nothing left to lose. They do have everything to hope for but it is a matter of fact that legal action has been the only remedy for this extremely vulnerable group. Without it, the PACE trial would not have been exposed for the fraud it was [2] [3] [4]. Without their families insisting on the inquests into the deaths of Sophia Mirza [5] and Merryn Crofts[6], the fact that medical mismanagement of ME routinely kills young people would not be known. In the light of so much evidence, the time for crowdfunding legal action has come. Knowing how we tried everything else first, I fully endorse and support #JusticeForME."

[1] Care Act (2014); Mental Capacity Act (2005); Mental Health Act (1983); Equality Act (2010); Human Rights Act (1998)

[2] Wilshire, C., Kindlon, T., Matthees, A., & McGrath, S. (2016) https://doi.org/10.1080/21641846.2017.1259724

[3] Wilshire, C.E., Kindlon, T., Courtney, R., Matthees, A., Tuller, D., Geraghty, K., Levin, B. (2018). https://doi.org/10.1186/s40359-018-0218-3

[4] Valerie Eliot Smith (2015) https://valerieeliotsmith.com/2015/01/20/the-secret-files-unwrapped-part-i-the-importance-of-fair-and-accurate-records/

[5] Brighton Coroners Court, 13 June 2006

[6] Rochdale Coroners Court, 19 May 2018
03814
Reposted by Didier
sarah boothby @swastrosarah.bsky.social · 18/09/2026
www.crowdjustice.com/case/justice... Please share widely #ME/cfs #LongCovidME #HumanRights #NHSReform
crowdjustice.com
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
01618
Reposted by Didier
Ramses Temmerman @ramsestemmerman.bsky.social · 17/09/2026
"The court did not accept the insurance provider's argument that equivalent care was available in Belgium. It pointed out that there is no specialized center for pediatric #LongCovid. The girl had unsuccessfully followed the Belgian care pathway for two years." #LongCovidKids #PAIS
despecialist.eu
Rechter stelt tekortkomingen vast in zorg voor kinderen met long covid in België
Een uitspraak van de arbeidsrechtbank van Luik van begin maart 2026 heeft tekortkomingen aan het licht gebracht in de zorg voor kinderen en jongeren (0-17 jaar) met long covid in België. Dat meldt de ...
1104
Reposted by Didier
Adam @abrokenbattery.bsky.social · 16/09/2026
Having the reality of your illness denied “is almost as bad as the actual physical symptoms themselves.” Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.
623988
Didier @medidier.bsky.social · 15/09/2026
+1 It does NOT get easier. 😒
2144
Reposted by Didier
Paula Knight 🎨✒️♿ @paulaknight.bsky.social · 13/09/2026
A couple of weeks ago it was my 3000th day bedridden. I drew this to mark the occasion. It's a long time for both illness-haver and carer #MyalgicEncephalomyelitis #MEcfs #ChronicIllness #DisabledArtists
A three panel one page comic featuring a white woman in a profiling bed in grey blue watercolour and the words 3,000 days in bed with severe myalgic encephalomyelitis. Other colours are brick red and muted orange
810136
Reposted by Didier
caixaresearch.bsky.social @caixaresearch.bsky.social · 14/09/2026
Looking for the right audience to discuss your latest findings? Present your work at Persistent Antibody Responses in Health and Disease and engage with researchers exploring the latest advances in antibody biology and disease. 📅 Submit your abstract until 15/09. tinyurl.com/4dcs674d
031
Didier @medidier.bsky.social · 14/09/2026
"As far back as 2023, Hwang proposed a clinical trial, and in 2025 Avindra Nath said one was on track, but something appears to have happened. I found no evidence that a clinical trial is underway". 💃 And that's 4 full years. Like that. The patience, somedays, I swear...
2103
Reposted by Didier
Litsa Dremousis @litsadremousis.bsky.social · 11/09/2026
Everyone w/ #MyalgicEncephalomyelitis or #LongCovid knows this, but for allies who want to learn more: Jaime Seltzer @exceedhergrasp1.bsky.social is the Scientific Director of ME Action @meactnet.bsky.social & Time Mag named her to their Top Science 100. She’s covering Stanford’s ME symposium rn:
23819
Reposted by Didier
It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026
Braeden talks about one study that showed how in even first-line MCAS interventions, 21% who were diagnosed with anxiety improved noticeably in anxiety symptoms, and in other systemic symptoms that are not considered neuropsych.
1264
Reposted by Didier
It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026
Paige is discussing the connection between a lack of energy and a lack of emotional regulation.
Slide titled “Mitochondrial Dysfunction,” with a colorful illustration of mitochondria. It states that reduced accessible cellular energy may impair physiological regulation across the body, contributing to autonomic imbalance, sympathetic dominance, inefficient ATP production, and inflammatory responses. The slide presents mitochondrial dysfunction as one possible contributing framework for psychiatric and neurodevelopmental conditions—not a replacement for broader biopsychosocial models. It explains that neurons depend on mitochondria for energy, calcium buffering, oxidative-stress regulation, and synaptic plasticity, proposing that deficits could manifest as mood instability, cognitive symptoms, or other psychiatric features.
33613
Didier @medidier.bsky.social · 12/09/2026
Absolutely incredible coverage of the symposium by @exceedhergrasp1.bsky.social million thanks! (From Kaufman's prez: an increasing pblm with #ME is how to get from bench research to bedside. An infuriating example --> asaik there are no commercial tests for beclin1 or atg13, even going private...)
141
Reposted by Didier
Long Covid Kids @longcovidkids.bsky.social · 09/09/2026
.🧵 1/7 When Long Covid affects a child’s education, attendance is only part of the story. As a new school year begins, new research looks beyond whether children are present in school, to learning, attention and friendships. #Education #InclusiveEducation #Attendance
Long Covid Kids graphic. “When Long Covid affects a child’s education, attendance is only part of the story.” New research looks at the impact on learning, attention and friendships.
22014