Didier
@medidier.bsky.social
Severe ME after covid infection Feb'22. Young dad. Bedbound. 🛌 #MillionsMissing #pwME #ThereForME #GreatestMEdicalScandal #PEM 🇬🇧🇲🇫🇪🇦🇧🇪
Reposted by Didier
Developed initially to target and kill tumors, they are now being engineered to target cells that are contributing to autoimmune diseases, like antibody-producing B cells.
#Science 🧪
#Science 🧪
‘They don’t have symptoms’: CAR-T therapies send autoimmune diseases into remission
Engineered T cells that have been used to treat ulcerative colitis, rheumatoid arthritis and lupus show promising results.
www.nature.com
November 27, 2025 at 11:03 PM
Developed initially to target and kill tumors, they are now being engineered to target cells that are contributing to autoimmune diseases, like antibody-producing B cells.
#Science 🧪
#Science 🧪
Reposted by Didier
Awesome to see @rorpreston.bsky.social and team keep adding more graphs and data to their brilliant website at crunchme.org!
They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world
They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world
CrunchME - Data & Research Visuals
Shareable visuals giving insight into key aspects of ME/CFS, long COVID, and other infection-associated chronic illnesses
crunchme.org
November 27, 2025 at 5:13 PM
Awesome to see @rorpreston.bsky.social and team keep adding more graphs and data to their brilliant website at crunchme.org!
They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world
They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world
Reposted by Didier
I am thankful for:
Researchers and doctors who understand the urgency and suffering of Long Covid/MECFS/Chronic Illness
The people who stick by us when we have those things.
Researchers and doctors who understand the urgency and suffering of Long Covid/MECFS/Chronic Illness
The people who stick by us when we have those things.
November 27, 2025 at 7:08 PM
I am thankful for:
Researchers and doctors who understand the urgency and suffering of Long Covid/MECFS/Chronic Illness
The people who stick by us when we have those things.
Researchers and doctors who understand the urgency and suffering of Long Covid/MECFS/Chronic Illness
The people who stick by us when we have those things.
Reposted by Didier
German Assisted suicide organisation is seing many applicants from young people with ME/CFS.
Haunting article but glad it was written and not ignored as usual.
Haunting article but glad it was written and not ignored as usual.
Suizidhelfer verzeichnen mehr Anträge von jungen Menschen mit ME/CFS-Erkrankung, darunter auch Post Covid, die Hilfe zur Selbsttötung erbitten.
Long Covid und Selbsttötung: Wenn nur der Suizid als Ausweg erscheint
Suizidhelfer verzeichnen mehr Anträge von jungen Menschen mit ME/CFS-Erkrankung, darunter auch Post Covid, die Hilfe zur Selbsttötung erbitten.
taz.de
November 27, 2025 at 8:30 PM
German Assisted suicide organisation is seing many applicants from young people with ME/CFS.
Haunting article but glad it was written and not ignored as usual.
Haunting article but glad it was written and not ignored as usual.
Reposted by Didier
Thirty-five years ago today. The Sydney Morning Herald. 27th November 1990. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
November 27, 2025 at 6:53 AM
Thirty-five years ago today. The Sydney Morning Herald. 27th November 1990. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
We are seeing this replicated many times now 👏👏👏
King’s College London researchers gave mice antibodies from post-COVID patients with pain and fatigue.
The mice developed pain and nerve damage, showing these autoantibodies likely cause long COVID sensory symptoms.
www.researchsquare.com/article/rs-7...
The mice developed pain and nerve damage, showing these autoantibodies likely cause long COVID sensory symptoms.
www.researchsquare.com/article/rs-7...
Autoantibodies mediate pain and sensory dysfunction in post-COVID syndrome
Pain and fatigue are common but poorly understood features of post-COVID Syndrome (PCS). To probe the mechanistic basis of these symptoms, we investigated sensory functions in patients with widesprea...
www.researchsquare.com
November 25, 2025 at 3:08 PM
We are seeing this replicated many times now 👏👏👏
Reposted by Didier
#2 - There’s a clear cross-party consensus that the government needs to go further ❤️💛💙
MPs across different parties spoke about how the government needs to go much further in taking action to create meaningful change in the lives of people with ME. Many spoke about funding.
MPs across different parties spoke about how the government needs to go much further in taking action to create meaningful change in the lives of people with ME. Many spoke about funding.
!["I remain deeply concerned that the [delivery] plan falls short of delivering the meaningful change that is urgently needed by people living with those conditions." Helen Maguire. LibDem spokesperson for primary care + MP for Epsom and Ewell. #ThereForME](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:wjbaponwuqichcsh2fiwono5/bafkreiafejby6axq2mnrvyitpbypzmqt4du4oe6veikp74vtuxje74qvca@jpeg)
November 25, 2025 at 9:47 AM
#2 - There’s a clear cross-party consensus that the government needs to go further ❤️💛💙
MPs across different parties spoke about how the government needs to go much further in taking action to create meaningful change in the lives of people with ME. Many spoke about funding.
MPs across different parties spoke about how the government needs to go much further in taking action to create meaningful change in the lives of people with ME. Many spoke about funding.
Reposted by Didier
#4 - The argument for research funding has been bolstered by German funding and DecodeME 👩🔬 💰
Several MPs mentioned new German funding + DecodeME. The argument for putting real money into ME research is feeling more compelling than ever.
Several MPs mentioned new German funding + DecodeME. The argument for putting real money into ME research is feeling more compelling than ever.
November 25, 2025 at 9:49 AM
#4 - The argument for research funding has been bolstered by German funding and DecodeME 👩🔬 💰
Several MPs mentioned new German funding + DecodeME. The argument for putting real money into ME research is feeling more compelling than ever.
Several MPs mentioned new German funding + DecodeME. The argument for putting real money into ME research is feeling more compelling than ever.
This one is big...
Million thanks @mecfsskeptic.bsky.social as usual for everything you share!!!!!!
🙏🌿
Million thanks @mecfsskeptic.bsky.social as usual for everything you share!!!!!!
🙏🌿
November 25, 2025 at 11:14 AM
This one is big...
Million thanks @mecfsskeptic.bsky.social as usual for everything you share!!!!!!
🙏🌿
Million thanks @mecfsskeptic.bsky.social as usual for everything you share!!!!!!
🙏🌿
Reposted by Didier
6) One of the more interesting findings is that CRPS antibodies caused pain sensitivity, but that deleting mast cells with the Mrgprb2 receptors did not reduce the sensitivity, as was the case with fibromyalgia antibodies.
This suggests different mechanisms are involved.
This suggests different mechanisms are involved.
November 25, 2025 at 11:05 AM
6) One of the more interesting findings is that CRPS antibodies caused pain sensitivity, but that deleting mast cells with the Mrgprb2 receptors did not reduce the sensitivity, as was the case with fibromyalgia antibodies.
This suggests different mechanisms are involved.
This suggests different mechanisms are involved.
Totally. This one sounds particularly interesting.
5) This is from a preprint (not peer-reviewed yet) from May 2025 that uses small sample sizes. But the results are fascinating and may be relevant to similar experiments with antibodies of Long Covid and ME/CFS patients.
November 25, 2025 at 11:12 AM
Totally. This one sounds particularly interesting.
Reposted by Didier
Today's #ThereForME blog shares our takeaways from last week's Westminster Hall debate, tabled by @tessamunt.bsky.social
👇
👇
November 25, 2025 at 9:45 AM
Today's #ThereForME blog shares our takeaways from last week's Westminster Hall debate, tabled by @tessamunt.bsky.social
👇
👇
I'll say it again: what @thereforme.bsky.social continue to do in just 1 year for #pwME is astonishing. It is giving us so much dignity back.
Huge milestone last week with @tessamunt.bsky.social and other MPs (& a *little* push coming from Germany...)
⤵️⤵️
www.thereforme.uk/p/campaign-u...
Huge milestone last week with @tessamunt.bsky.social and other MPs (& a *little* push coming from Germany...)
⤵️⤵️
www.thereforme.uk/p/campaign-u...
Campaign Update #28: Five takeaways from Westminster Hall
Today’s update is focused on parliament, where last Wednesday MPs met in Westminster Hall for a debate focused on support for ME.
www.thereforme.uk
November 25, 2025 at 11:08 AM
I'll say it again: what @thereforme.bsky.social continue to do in just 1 year for #pwME is astonishing. It is giving us so much dignity back.
Huge milestone last week with @tessamunt.bsky.social and other MPs (& a *little* push coming from Germany...)
⤵️⤵️
www.thereforme.uk/p/campaign-u...
Huge milestone last week with @tessamunt.bsky.social and other MPs (& a *little* push coming from Germany...)
⤵️⤵️
www.thereforme.uk/p/campaign-u...
Reposted by Didier
Germany. In 4 years. From absolutely nothing, to world leader in this space. Also in terms of framing, not only money and funding.
When there is a will, there is a way.
It can be done. (Most intelligent long-term investment ever as well).
THANK YOU.
When there is a will, there is a way.
It can be done. (Most intelligent long-term investment ever as well).
THANK YOU.
Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID.
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Chronic Fatigue Syndrome: Bundesregierung will Erforschung von ME/CFS stärker fördern
Die Zahl der Long-Covid- und ME/CFS-Erkrankungen hat seit der Pandemie stark zugenommen. Bis 2036 sollen deswegen 500 Millionen Euro in die Forschung investiert werden.
www.zeit.de
November 14, 2025 at 7:20 AM
Germany. In 4 years. From absolutely nothing, to world leader in this space. Also in terms of framing, not only money and funding.
When there is a will, there is a way.
It can be done. (Most intelligent long-term investment ever as well).
THANK YOU.
When there is a will, there is a way.
It can be done. (Most intelligent long-term investment ever as well).
THANK YOU.
Reposted by Didier
“National Decade Against Post-Infectious Diseases” is just such a lovely phrase to hear. Can’t even express what it means as pwME and in these times.
After some hardcore protesting in Germany!! Well done‼️‼️🇩🇪🇩🇪
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
(S+) Ex-Gesundheitsminister Lauterbach: Forschung gegen ME/CFS wird ausgeweitet
Union und SPD wollen mehr Geld in die Erforschung postinfektiöser Erkrankungen wie Long Covid stecken. Deutschland könne damit zum weltweiten Vorreiter werden, sagt Ex-Gesundheitsminister Lauterbach.
www.spiegel.de
November 14, 2025 at 9:42 PM
“National Decade Against Post-Infectious Diseases” is just such a lovely phrase to hear. Can’t even express what it means as pwME and in these times.
Reposted by Didier
ME patient talks about his experience & researcher Olav Mella on the ongoing Daratumumab study in a magazine for the Norwegian Society of Graduate technical & Scientific Professionals
Google translation
www-tekna-no.translate.goog/magasinet/ma...
Screenshot from Science for ME update
#MEcfs #CFS
Google translation
www-tekna-no.translate.goog/magasinet/ma...
Screenshot from Science for ME update
#MEcfs #CFS
November 24, 2025 at 2:07 AM
ME patient talks about his experience & researcher Olav Mella on the ongoing Daratumumab study in a magazine for the Norwegian Society of Graduate technical & Scientific Professionals
Google translation
www-tekna-no.translate.goog/magasinet/ma...
Screenshot from Science for ME update
#MEcfs #CFS
Google translation
www-tekna-no.translate.goog/magasinet/ma...
Screenshot from Science for ME update
#MEcfs #CFS
Reposted by Didier
The Hamilton Spectator, Canada. 24th November 1990 -
thirty-five years ago today.
"'Yuppie flu' reported 200 years ago, physicians say".
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
thirty-five years ago today.
"'Yuppie flu' reported 200 years ago, physicians say".
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
November 24, 2025 at 8:13 AM
The Hamilton Spectator, Canada. 24th November 1990 -
thirty-five years ago today.
"'Yuppie flu' reported 200 years ago, physicians say".
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
thirty-five years ago today.
"'Yuppie flu' reported 200 years ago, physicians say".
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
Mindblowing how interchangeable and identical are some of the newest discoveries related to RA, MS, fibro... this on RA was the identical finding a month ago about MS!
ME is getting there but the rage of knowing we have 50 years of delay is hard to take.
ME is getting there but the rage of knowing we have 50 years of delay is hard to take.
7-Year Study Reveals Rheumatoid Arthritis Begins Long Before Symptoms #Science #HealthandMedicine #Rheumatology #RheumatoidArthritis #HealthResearch #ChronicIllness
7-Year Study Reveals Rheumatoid Arthritis Begins Long Before Symptoms
The seven-year study identifies early warning signs that may allow doctors to detect the disease before it develops, potentially sparing patients years of pain and disability. Scientists have found that...
purescience.news
November 24, 2025 at 7:39 AM
Mindblowing how interchangeable and identical are some of the newest discoveries related to RA, MS, fibro... this on RA was the identical finding a month ago about MS!
ME is getting there but the rage of knowing we have 50 years of delay is hard to take.
ME is getting there but the rage of knowing we have 50 years of delay is hard to take.
Reposted by Didier
This is not specific PT/OT, it's telling the person to walk more steps tomorrow than today, as if it's something that would not have occurred to the patient without help.
It's astonishing hubris.
And it is harmful, especially when it comes with the adjuration to ignore resultant symptoms.
It's astonishing hubris.
And it is harmful, especially when it comes with the adjuration to ignore resultant symptoms.
November 21, 2025 at 3:56 PM
This is not specific PT/OT, it's telling the person to walk more steps tomorrow than today, as if it's something that would not have occurred to the patient without help.
It's astonishing hubris.
And it is harmful, especially when it comes with the adjuration to ignore resultant symptoms.
It's astonishing hubris.
And it is harmful, especially when it comes with the adjuration to ignore resultant symptoms.
Reposted by Didier
...of the presumption that gradually increasing exercise is a rehabilitative for people with infection-associated chronic conditions like #MECFS and #LongCOVID.
The idea of graded exercise as a special therapy your doctor has to help you carry out is absurd.
The idea of graded exercise as a special therapy your doctor has to help you carry out is absurd.
November 21, 2025 at 3:56 PM
...of the presumption that gradually increasing exercise is a rehabilitative for people with infection-associated chronic conditions like #MECFS and #LongCOVID.
The idea of graded exercise as a special therapy your doctor has to help you carry out is absurd.
The idea of graded exercise as a special therapy your doctor has to help you carry out is absurd.
Reposted by Didier
Twenty-one years ago today.
The Daily Telegraph, UK. 23rd November 2004.
About #gulfwarsyndrome #gws but refers to #mecfs #cfsme #myalgicencephalomyelitis #myalgice
The Daily Telegraph, UK. 23rd November 2004.
About #gulfwarsyndrome #gws but refers to #mecfs #cfsme #myalgicencephalomyelitis #myalgice
November 23, 2025 at 7:09 AM
Twenty-one years ago today.
The Daily Telegraph, UK. 23rd November 2004.
About #gulfwarsyndrome #gws but refers to #mecfs #cfsme #myalgicencephalomyelitis #myalgice
The Daily Telegraph, UK. 23rd November 2004.
About #gulfwarsyndrome #gws but refers to #mecfs #cfsme #myalgicencephalomyelitis #myalgice
Reposted by Didier
The first feature-length documentary on ME/CFS & #LongCOVID, “What Doesn’t Kill You…” is crowd-funding.
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
The First Feature-Length Documentary on ME/CFS and Long COVID (Now Crowdfunding)
YouTube video by What Doesn't Kill You
www.youtube.com
November 22, 2025 at 12:01 AM
The first feature-length documentary on ME/CFS & #LongCOVID, “What Doesn’t Kill You…” is crowd-funding.
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
Seems lately we are getting somewhere, and at the same time it feels so painfully slow...
The info was there since 1970. #pwME have been the most consistent cohort in terms of abnormalities and symptoms if you cared to look. IVIG and those immune DMT used in MS have been there for 20 years...
The info was there since 1970. #pwME have been the most consistent cohort in terms of abnormalities and symptoms if you cared to look. IVIG and those immune DMT used in MS have been there for 20 years...
Health Rising: “A Long COVID Autoimmune Subset Coming into View? (and Why ME/CFS May be Next)”
“The good news.. is that SOLVE M.E.’s new Catalyst award will allow Dr Iwasaki to replicate her work in ME/CFS and prepare the path…”
www.healthrising.org/blog/2025/11...
“The good news.. is that SOLVE M.E.’s new Catalyst award will allow Dr Iwasaki to replicate her work in ME/CFS and prepare the path…”
www.healthrising.org/blog/2025/11...
A Long COVID Autoimmune Subset Coming into View? ( and Why ME/CFS May be Next) - Health Rising
Solve ME Catalyst Award winner Dr. Iwasaki explains a subset of long COVID patients may have an autoimmune disease. Now she moves onto ME/CFS.
www.healthrising.org
November 22, 2025 at 8:10 AM
Seems lately we are getting somewhere, and at the same time it feels so painfully slow...
The info was there since 1970. #pwME have been the most consistent cohort in terms of abnormalities and symptoms if you cared to look. IVIG and those immune DMT used in MS have been there for 20 years...
The info was there since 1970. #pwME have been the most consistent cohort in terms of abnormalities and symptoms if you cared to look. IVIG and those immune DMT used in MS have been there for 20 years...
Reposted by Didier
So often doctors, researchers, and the media miss this 👇
They flatten post-exertional malaise (PEM) into one symptom: fatigue.
My neurologist did this. Rather than argue I decided to count.
I had over ❗️50 ❗️new or worsened symptoms during my last major PEM.
They flatten post-exertional malaise (PEM) into one symptom: fatigue.
My neurologist did this. Rather than argue I decided to count.
I had over ❗️50 ❗️new or worsened symptoms during my last major PEM.
PEM is not a single symptom; it's a pathological state in which response to exertion is shock-like: drops in BP, drops in oxygenation, drops in HR, drops in temp, transient drops in cognitive ability.
And doing exercise more, or harder, or more often does not alter the nature of the response.
And doing exercise more, or harder, or more often does not alter the nature of the response.
November 22, 2025 at 2:14 AM
So often doctors, researchers, and the media miss this 👇
They flatten post-exertional malaise (PEM) into one symptom: fatigue.
My neurologist did this. Rather than argue I decided to count.
I had over ❗️50 ❗️new or worsened symptoms during my last major PEM.
They flatten post-exertional malaise (PEM) into one symptom: fatigue.
My neurologist did this. Rather than argue I decided to count.
I had over ❗️50 ❗️new or worsened symptoms during my last major PEM.
Reposted by Didier
Sometimes I forget that normies don’t understand the “possible permanent decline” part. Yes, getting sick after basic tasks is terrible enough. But we want to LIVE. If we could assuredly recover we’d do ALL THE THINGS, get sick, recover & repeat. That alone would be life-changing. #MECFS #LongCovid
People with #MECFS, and many with #LongCOVID experience post-exertional malaise: a flare of symptoms after activity. The response is disproportionate to the activity and can lead to permanent drops in functional capacity.
www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext
www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic
disease often preceded by infection. There has been increased interest in ME/CFS recently
because of its significant...
www.mayoclinicproceedings.org
November 21, 2025 at 4:31 PM
Sometimes I forget that normies don’t understand the “possible permanent decline” part. Yes, getting sick after basic tasks is terrible enough. But we want to LIVE. If we could assuredly recover we’d do ALL THE THINGS, get sick, recover & repeat. That alone would be life-changing. #MECFS #LongCovid