Didier
@medidier.bsky.social
ME after covid infection Feb'22. Young dad. Bedbound. 🛌 #ThereForME #GreatestMEdicalScandal #PEM 🇬🇧🇲🇫🇪🇦🇧🇪
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.
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 👇
Reposted by Didier
This is *pitiful*. 😞
@ashleydaltonmp.bsky.social Your department needs to try an *awful* lot harder.
@ashleydaltonmp.bsky.social Your department needs to try an *awful* lot harder.
February 9, 2026 at 4:54 PM
This is *pitiful*. 😞
@ashleydaltonmp.bsky.social Your department needs to try an *awful* lot harder.
@ashleydaltonmp.bsky.social Your department needs to try an *awful* lot harder.
So not only it is opaque, hidden, voluntary and the balance is 50 people out of 400.000, but on top of that the course in itself is s***?
I follow the news from Germany about #ME in the last 2 years and the UK gvt is doing sooooooooo bad. No shame.
I follow the news from Germany about #ME in the last 2 years and the UK gvt is doing sooooooooo bad. No shame.
I'm glad so many clinicians are voting with their feet.
These modules are not fit for purpose, being ill informed about #ME (sic) and not educational either.
Patients, their families, clinicians and researchers deserve a LOT better.
These modules are not fit for purpose, being ill informed about #ME (sic) and not educational either.
Patients, their families, clinicians and researchers deserve a LOT better.
This is *pitiful*. 😞
@ashleydaltonmp.bsky.social Your department needs to try an *awful* lot harder.
@ashleydaltonmp.bsky.social Your department needs to try an *awful* lot harder.
February 10, 2026 at 8:15 AM
So not only it is opaque, hidden, voluntary and the balance is 50 people out of 400.000, but on top of that the course in itself is s***?
I follow the news from Germany about #ME in the last 2 years and the UK gvt is doing sooooooooo bad. No shame.
I follow the news from Germany about #ME in the last 2 years and the UK gvt is doing sooooooooo bad. No shame.
Reposted by Didier
Come on... the plan explicitly mentions 'rebuilding trust'... how can this be done if the most basic measure (0£) which is changing TODAY education and awareness is not even enforced???? We come from 40y of the #GreatestMEdicalScandal, how this will objectively guarantee to break from any of it????
July 28, 2025 at 9:52 AM
Come on... the plan explicitly mentions 'rebuilding trust'... how can this be done if the most basic measure (0£) which is changing TODAY education and awareness is not even enforced???? We come from 40y of the #GreatestMEdicalScandal, how this will objectively guarantee to break from any of it????
Reposted by Didier
I even fail to see in 10 pages A SINGLE MEASURABLE benchmark, objective or goalpost that we could use to create accountability... I mean... come on. We all know how politics work.
July 28, 2025 at 9:52 AM
I even fail to see in 10 pages A SINGLE MEASURABLE benchmark, objective or goalpost that we could use to create accountability... I mean... come on. We all know how politics work.
This is nothing short of dying while being spit in your face.
5/n
Today, I received their answer. This is the data table they sent me, of the number of people who have completed each of the 3 modules up to 20 January 2026:
Today, I received their answer. This is the data table they sent me, of the number of people who have completed each of the 3 modules up to 20 January 2026:
February 10, 2026 at 7:09 AM
This is nothing short of dying while being spit in your face.
This confirms what all #pwME said back in August. Without compulsory universal training it is beyond ridicule to think the system will correct and amend itself after 50y of institutional neglect and abuse.
Briliantly done @lucibee.bsky.social
Absolutely pitiful.
Briliantly done @lucibee.bsky.social
Absolutely pitiful.
This is *pitiful*. 😞
@ashleydaltonmp.bsky.social Your department needs to try an *awful* lot harder.
@ashleydaltonmp.bsky.social Your department needs to try an *awful* lot harder.
February 10, 2026 at 7:07 AM
This confirms what all #pwME said back in August. Without compulsory universal training it is beyond ridicule to think the system will correct and amend itself after 50y of institutional neglect and abuse.
Briliantly done @lucibee.bsky.social
Absolutely pitiful.
Briliantly done @lucibee.bsky.social
Absolutely pitiful.
Reposted by Didier
Thanks for everything you’re doing. I recently had an exchange over training; there is NO formal MSc in post viral conditions like MECFS and if we want properly qualified, specialist healthcare professionals for this, Long Covid, PoTS, MCAS etc, that’s what’s needed. I despair
February 9, 2026 at 6:42 PM
Thanks for everything you’re doing. I recently had an exchange over training; there is NO formal MSc in post viral conditions like MECFS and if we want properly qualified, specialist healthcare professionals for this, Long Covid, PoTS, MCAS etc, that’s what’s needed. I despair