Didier
@medidier.bsky.social
ME after covid infection Feb'22. Young dad. Bedbound. 🛌 #ThereForME #GreatestMEdicalScandal #PEM 🇬🇧🇲🇫🇪🇦🇧🇪
Reposted by Didier
6 months since the precious "final" "delivery" "plan" was posted (it can't be final w/o provisions for the (very) severe, it doesn't deliver, it fails to plan).
It has achieved exactly what every #pwME said it would.
Fuck All.
Or in other words a continuation of decades of abuse by UK Govt.
It has achieved exactly what every #pwME said it would.
Fuck All.
Or in other words a continuation of decades of abuse by UK Govt.
Campaign update #30: Six months since the publication of the Final Delivery Plan for ME
January 22nd marked six months since the publication of the government’s new Final Delivery Plan for ME.
www.thereforme.uk
February 17, 2026 at 10:00 AM
6 months since the precious "final" "delivery" "plan" was posted (it can't be final w/o provisions for the (very) severe, it doesn't deliver, it fails to plan).
It has achieved exactly what every #pwME said it would.
Fuck All.
Or in other words a continuation of decades of abuse by UK Govt.
It has achieved exactly what every #pwME said it would.
Fuck All.
Or in other words a continuation of decades of abuse by UK Govt.
The #GreatestMEdicalScandal should have been brought to the Supreme Court 30y ago and I am really surprised there haven't been big judiciary movements about the topic in the last 6 years. You will not find an easier and more flagrant health abuse to pick on the state.
February 19, 2026 at 8:08 AM
The #GreatestMEdicalScandal should have been brought to the Supreme Court 30y ago and I am really surprised there haven't been big judiciary movements about the topic in the last 6 years. You will not find an easier and more flagrant health abuse to pick on the state.
Reposted by Didier
ME/CFS Delivery Plan 6 months on
Empty words and no concrete action
Severe ME patients still being failed, Savannah’s case shows the human cost of inaction. Training uptake is feeble. Research is moving mainly through charities, not government.
www.thereforme.uk/p/campaign-u...
Empty words and no concrete action
Severe ME patients still being failed, Savannah’s case shows the human cost of inaction. Training uptake is feeble. Research is moving mainly through charities, not government.
www.thereforme.uk/p/campaign-u...
February 19, 2026 at 5:24 AM
ME/CFS Delivery Plan 6 months on
Empty words and no concrete action
Severe ME patients still being failed, Savannah’s case shows the human cost of inaction. Training uptake is feeble. Research is moving mainly through charities, not government.
www.thereforme.uk/p/campaign-u...
Empty words and no concrete action
Severe ME patients still being failed, Savannah’s case shows the human cost of inaction. Training uptake is feeble. Research is moving mainly through charities, not government.
www.thereforme.uk/p/campaign-u...
Reposted by Didier
International ME/CFS Conference 2026: Registration for the online livestream is now open.
7-8 May, 2026. Latest research on #mecfs and #LongCOVID from leading international experts.
Register now: https://t.ly/Ow2Co
7-8 May, 2026. Latest research on #mecfs and #LongCOVID from leading international experts.
Register now: https://t.ly/Ow2Co
February 17, 2026 at 5:05 PM
International ME/CFS Conference 2026: Registration for the online livestream is now open.
7-8 May, 2026. Latest research on #mecfs and #LongCOVID from leading international experts.
Register now: https://t.ly/Ow2Co
7-8 May, 2026. Latest research on #mecfs and #LongCOVID from leading international experts.
Register now: https://t.ly/Ow2Co
Reposted by Didier
Steve’s Law:
The reception, compassion & empathy given by a Health Care Worker to a patient is directly proportional to their confidence of leading them to a successful outcome.
Any hostility or blame directed towards the patient is evidence that they are way, way out of their depth.
#pwME #pwLC
The reception, compassion & empathy given by a Health Care Worker to a patient is directly proportional to their confidence of leading them to a successful outcome.
Any hostility or blame directed towards the patient is evidence that they are way, way out of their depth.
#pwME #pwLC
February 17, 2026 at 11:52 AM
Reposted by Didier
I was particularly surprised by this "aim" from RCP that all of their ~40,000 members would undertake the modules by the end of 2025.
Particularly as (afaik) they have made no attempt to tell members about the modules, and no CPD points are available for completing the modules.
#MEDeliveryPlan
Particularly as (afaik) they have made no attempt to tell members about the modules, and no CPD points are available for completing the modules.
#MEDeliveryPlan
2/n
The reason I asked was because the ME/CFS Delivery Plan makes some quite distinct promises (alright, "aims") about their e-learning package, including this item in their table of Agreed Actions.
www.gov.uk/government/p...
The reason I asked was because the ME/CFS Delivery Plan makes some quite distinct promises (alright, "aims") about their e-learning package, including this item in their table of Agreed Actions.
www.gov.uk/government/p...
February 16, 2026 at 2:22 PM
I was particularly surprised by this "aim" from RCP that all of their ~40,000 members would undertake the modules by the end of 2025.
Particularly as (afaik) they have made no attempt to tell members about the modules, and no CPD points are available for completing the modules.
#MEDeliveryPlan
Particularly as (afaik) they have made no attempt to tell members about the modules, and no CPD points are available for completing the modules.
#MEDeliveryPlan
Reposted by Didier
‘Let me blunt: everything about how the NHS handles ME is broken. From the perspective of a patient and carer, everything is on fire.’
February 10, 2026 at 9:35 AM
‘Let me blunt: everything about how the NHS handles ME is broken. From the perspective of a patient and carer, everything is on fire.’
Reposted by Didier
'...in a context where the NHS is not equipped to provide James with any meaningful medical treatment, isn’t covering the costs of the care he needs to avoid further deterioration the very least they could do?'
So sorry to read this but so grateful to Karen for sharing it.
So sorry to read this but so grateful to Karen for sharing it.
In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
![A picture of a young woman and man together smiling (Karen and James). Overlaid on the picture: "When I first came across CHC funding it felt like the perfect fit [...] Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected." Karen Hargrave. New #ThereForME Substack post.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:wjbaponwuqichcsh2fiwono5/bafkreifod7x7n4p4nd4i7wresiukfpxc4sb3rewzva7r63te4vpqpioo2m@jpeg)
February 10, 2026 at 9:48 AM
'...in a context where the NHS is not equipped to provide James with any meaningful medical treatment, isn’t covering the costs of the care he needs to avoid further deterioration the very least they could do?'
So sorry to read this but so grateful to Karen for sharing it.
So sorry to read this but so grateful to Karen for sharing it.
... + he compares gvt's actions with other countries and similar (more succesful) political promises in the past.
Finally, he showcases those doing better (both among policymakers, civil society, etc...).
Accountability, comparison, example. Always the winning ticket!!!!!!!!! 👏👏👏👏👏
Finally, he showcases those doing better (both among policymakers, civil society, etc...).
Accountability, comparison, example. Always the winning ticket!!!!!!!!! 👏👏👏👏👏
February 17, 2026 at 10:17 AM
... + he compares gvt's actions with other countries and similar (more succesful) political promises in the past.
Finally, he showcases those doing better (both among policymakers, civil society, etc...).
Accountability, comparison, example. Always the winning ticket!!!!!!!!! 👏👏👏👏👏
Finally, he showcases those doing better (both among policymakers, civil society, etc...).
Accountability, comparison, example. Always the winning ticket!!!!!!!!! 👏👏👏👏👏
This blogpost by @nickbenton.bsky.social via @thereforme.bsky.social is absolutely BRILLIANT. Truly outstanding advocacy. He does it all: grades advances based on promises (unsurprisingly really bad grades 0 or 1/5)...
www.thereforme.uk/p/campaign-u...
www.thereforme.uk/p/campaign-u...
Campaign update #30: Six months since the publication of the Final Delivery Plan for ME
January 22nd marked six months since the publication of the government’s new Final Delivery Plan for ME.
www.thereforme.uk
February 17, 2026 at 10:17 AM
This blogpost by @nickbenton.bsky.social via @thereforme.bsky.social is absolutely BRILLIANT. Truly outstanding advocacy. He does it all: grades advances based on promises (unsurprisingly really bad grades 0 or 1/5)...
www.thereforme.uk/p/campaign-u...
www.thereforme.uk/p/campaign-u...
Reposted by Didier
Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18.
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
February 16, 2026 at 5:54 AM
Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18.
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
Reposted by Didier
Reposted by Didier
1) Dr. Felipe Correa da Silva shared more info about the first 10 brain autopsies from the Netherlands.
In this new thread, we made a brief summary of his presentation.
In this new thread, we made a brief summary of his presentation.
February 7, 2026 at 1:54 PM
1) Dr. Felipe Correa da Silva shared more info about the first 10 brain autopsies from the Netherlands.
In this new thread, we made a brief summary of his presentation.
In this new thread, we made a brief summary of his presentation.
Reposted by Didier
Clip from German TV - 19-year-old Martha developed ME/CFS following COVID (English subs)
Mostly confined to her sofa, carefully pacing her energy to avoid crashes.
No school. No social life. No approved treatment. #LongCovid
Mostly confined to her sofa, carefully pacing her energy to avoid crashes.
No school. No social life. No approved treatment. #LongCovid
February 14, 2026 at 1:54 AM
Clip from German TV - 19-year-old Martha developed ME/CFS following COVID (English subs)
Mostly confined to her sofa, carefully pacing her energy to avoid crashes.
No school. No social life. No approved treatment. #LongCovid
Mostly confined to her sofa, carefully pacing her energy to avoid crashes.
No school. No social life. No approved treatment. #LongCovid
Reposted by Didier
I've now had #MyalgicEncephalomyelitis 37 years (since age 16), 31 years with #SevereME🙁
We need more public & private* research money to speed up progress
Here's my story in Irish Independent m.independent.ie/life/health-...
*List of research funds
phoenixrising.me/myalgic-ence...
#MEcfs #PwME
We need more public & private* research money to speed up progress
Here's my story in Irish Independent m.independent.ie/life/health-...
*List of research funds
phoenixrising.me/myalgic-ence...
#MEcfs #PwME
February 13, 2026 at 10:14 PM
I've now had #MyalgicEncephalomyelitis 37 years (since age 16), 31 years with #SevereME🙁
We need more public & private* research money to speed up progress
Here's my story in Irish Independent m.independent.ie/life/health-...
*List of research funds
phoenixrising.me/myalgic-ence...
#MEcfs #PwME
We need more public & private* research money to speed up progress
Here's my story in Irish Independent m.independent.ie/life/health-...
*List of research funds
phoenixrising.me/myalgic-ence...
#MEcfs #PwME
I often feel they not only gaslight us, but they must believe we have become somewhat completely stupid when we develop this illness?
#GreatestMEdicalScandal
#GreatestMEdicalScandal
We don’t need to be encouraged to rearrange how we spend our finite capacity in ways that steal from our function & make us sicker. We don’t need to be advised on how to rearrange deck chairs on the titanic. What we need is real research & real treatments, so we can have real capacity increases.
February 13, 2026 at 4:55 PM
I often feel they not only gaslight us, but they must believe we have become somewhat completely stupid when we develop this illness?
#GreatestMEdicalScandal
#GreatestMEdicalScandal
Reposted by Didier
Over years of constant rolling PEM & constantly scaling back to what I thought *must* be safe—but was never actually enough rest to get me out of all the PEM I had accumulated—I ended up severe. By the time I finally got a wheelchair, I was mostly too sick to use it.
February 13, 2026 at 1:51 PM
Over years of constant rolling PEM & constantly scaling back to what I thought *must* be safe—but was never actually enough rest to get me out of all the PEM I had accumulated—I ended up severe. By the time I finally got a wheelchair, I was mostly too sick to use it.
Reposted by Didier
The firestorm continues 😔.
There are so many reports of EBV being a trigger for #ME & studies showing viral reactivation being part of the picture for #IACC - a sad day for science.
There are so many reports of EBV being a trigger for #ME & studies showing viral reactivation being part of the picture for #IACC - a sad day for science.
In terms of what cures are being lost:
- Epstein-Barr virus is perhaps the major trigger for multiple sclerosis
- herpes simplex virus causes cold sores, genital herpes, infections in babies, deadly meningitis
- shingles virus causes an intensely painful disease
- Epstein-Barr virus is perhaps the major trigger for multiple sclerosis
- herpes simplex virus causes cold sores, genital herpes, infections in babies, deadly meningitis
- shingles virus causes an intensely painful disease
February 13, 2026 at 1:53 PM
Reposted by Didier
Mast cell activation can disrupt the gut–blood & blood–brain barriers. Driving inflammation, microglial activation & neuronal damage linked to ASD.
📢 Call for Papers
2nd Edition: GMC2026
June 15–16, 2026 | Boston, USA (Hybrid)
📝 2nd Round: Feb 22, 2026
microbiomecongress.org/abstract-sub...
📢 Call for Papers
2nd Edition: GMC2026
June 15–16, 2026 | Boston, USA (Hybrid)
📝 2nd Round: Feb 22, 2026
microbiomecongress.org/abstract-sub...
February 13, 2026 at 6:56 AM
Mast cell activation can disrupt the gut–blood & blood–brain barriers. Driving inflammation, microglial activation & neuronal damage linked to ASD.
📢 Call for Papers
2nd Edition: GMC2026
June 15–16, 2026 | Boston, USA (Hybrid)
📝 2nd Round: Feb 22, 2026
microbiomecongress.org/abstract-sub...
📢 Call for Papers
2nd Edition: GMC2026
June 15–16, 2026 | Boston, USA (Hybrid)
📝 2nd Round: Feb 22, 2026
microbiomecongress.org/abstract-sub...
Reposted by Didier
"Terwijl Duitsland #MEcvs en #LongCovid erkent als een van de grote gezondheidsuitdagingen van deze eeuw, blijft België vasthouden aan een achterhaald beleid. Patiënten betalen daarvoor een zware prijs."
Mijn opiniestuk @knack.be⬇️
#LangdurigZieken #PAIS
www.knack.be/opinie/me-cv...
Mijn opiniestuk @knack.be⬇️
#LangdurigZieken #PAIS
www.knack.be/opinie/me-cv...
February 12, 2026 at 3:18 PM
"Terwijl Duitsland #MEcvs en #LongCovid erkent als een van de grote gezondheidsuitdagingen van deze eeuw, blijft België vasthouden aan een achterhaald beleid. Patiënten betalen daarvoor een zware prijs."
Mijn opiniestuk @knack.be⬇️
#LangdurigZieken #PAIS
www.knack.be/opinie/me-cv...
Mijn opiniestuk @knack.be⬇️
#LangdurigZieken #PAIS
www.knack.be/opinie/me-cv...
Reposted by Didier
FOI response shows uptake of ME/CFS e-learning from the government delivery plan:
• Intro: 371
• Community care: 101
• Severe ME: <50
From a workforce of ~188k doctors & ~423k nurses
This is the problem when training is “promoted” and not mandatory.
• Intro: 371
• Community care: 101
• Severe ME: <50
From a workforce of ~188k doctors & ~423k nurses
This is the problem when training is “promoted” and not mandatory.
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...
🧵 1/n
🧵 1/n
February 9, 2026 at 5:30 PM
FOI response shows uptake of ME/CFS e-learning from the government delivery plan:
• Intro: 371
• Community care: 101
• Severe ME: <50
From a workforce of ~188k doctors & ~423k nurses
This is the problem when training is “promoted” and not mandatory.
• Intro: 371
• Community care: 101
• Severe ME: <50
From a workforce of ~188k doctors & ~423k nurses
This is the problem when training is “promoted” and not mandatory.
Reposted by Didier
Clip from German TV.
Julia developed ME/CFS after Covid in 2022. She is one of around 600,000 people in Germany living with the condition. It can be severely disabling, some mornings she can’t even get to the toilet without help. #MECFS #LongCovid
Julia developed ME/CFS after Covid in 2022. She is one of around 600,000 people in Germany living with the condition. It can be severely disabling, some mornings she can’t even get to the toilet without help. #MECFS #LongCovid
February 12, 2026 at 9:13 AM
Clip from German TV.
Julia developed ME/CFS after Covid in 2022. She is one of around 600,000 people in Germany living with the condition. It can be severely disabling, some mornings she can’t even get to the toilet without help. #MECFS #LongCovid
Julia developed ME/CFS after Covid in 2022. She is one of around 600,000 people in Germany living with the condition. It can be severely disabling, some mornings she can’t even get to the toilet without help. #MECFS #LongCovid
Reposted by Didier
I have spent quite a bit of time/energy already on this and it is going to be my primary focus for the next few months. Please highlight widely. 🙏 #Ireland #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Dr Bansal's 5 free Irish ME/CFS talks in #Cork/ #Dublin/ #Galway/ #Limerick/ #Sligo, May 2026:
Sign up for updates here:
docs.google.com/forms/d/1M8q...
Info also here:
irishmecfs.org/blog/may-202...
Please share widely, tag others, etc.
#MEcfs #CFS #PwME
Sign up for updates here:
docs.google.com/forms/d/1M8q...
Info also here:
irishmecfs.org/blog/may-202...
Please share widely, tag others, etc.
#MEcfs #CFS #PwME
February 11, 2026 at 11:27 PM
I have spent quite a bit of time/energy already on this and it is going to be my primary focus for the next few months. Please highlight widely. 🙏 #Ireland #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Reposted by Didier
An essential read.
So much about this has me furious and scared, but the frankly evil framing of James's needs as preferences is perhaps the worst.
Very severe patients are the most vulnerable. They and their exhausted carers deserve so much more than this.
So much about this has me furious and scared, but the frankly evil framing of James's needs as preferences is perhaps the worst.
Very severe patients are the most vulnerable. They and their exhausted carers deserve so much more than this.
February 10, 2026 at 9:34 AM
An essential read.
So much about this has me furious and scared, but the frankly evil framing of James's needs as preferences is perhaps the worst.
Very severe patients are the most vulnerable. They and their exhausted carers deserve so much more than this.
So much about this has me furious and scared, but the frankly evil framing of James's needs as preferences is perhaps the worst.
Very severe patients are the most vulnerable. They and their exhausted carers deserve so much more than this.
Reposted by Didier
In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
February 10, 2026 at 9:19 AM
In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇