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Assessment and Incidence Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Following a SARS-CoV-2 Infection in a Prospective Cohort of Hospital Employees — Matthias Tack et al.
"our study found an incidence of at least 11.8% (CI 95% 7.8–16.8) for PCS with fatigue and 3.2% (CI 95% 1.3–6.4) for post-COVID-19 ME/CFS in HEs 21 months after the first SARS-CoV-2 infection."

Assessment and Incidence Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Following a SARS-CoV-2 Infection in a Prospective Cohort of Hospital Employees — Matthias Tack et al. "our study found an incidence of at least 11.8% (CI 95% 7.8–16.8) for PCS with fatigue and 3.2% (CI 95% 1.3–6.4) for post-COVID-19 ME/CFS in HEs 21 months after the first SARS-CoV-2 infection."

From Germany:

Assessment and Incidence Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Following a SARS-CoV-2 Infection in a Prospective Cohort of Hospital Employees

www.mdpi.com/1648-9144/62...

Screenshot from Science for ME weekly update

#LongCovid #MEcfs #CFS #PwME

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George and his ME/CFS

3-panel cartoon

1st panel:
George: it's my ME/CFS… I'm having a really bad day 

2nd panel:
woman to George: any idea what caused this setback?

3rd panel:
George: I've narrowed it down to something I haven't taken
(in the background are lots of boxes of different prescriptions)

George and his ME/CFS 3-panel cartoon 1st panel: George: it's my ME/CFS… I'm having a really bad day 2nd panel: woman to George: any idea what caused this setback? 3rd panel: George: I've narrowed it down to something I haven't taken (in the background are lots of boxes of different prescriptions)

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More from a series of comic strips about life as a person with ME/CFS.

"George and His ME/CFS"

🎨Rick Menard

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients? — Stallard et al.
"Given the lack of sound research support for graded exercise therapy in ME/CFS, the contraindication of graded exercise therapy by best practice guidelines in the US and the UK, and patient reports of iatrogenic harm, the RACGP guideline, Incremental physical activity for chronic fatigue syndrome/ myalgic encephalomyelitis, should be withdrawn immediately."

Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients? — Stallard et al. "Given the lack of sound research support for graded exercise therapy in ME/CFS, the contraindication of graded exercise therapy by best practice guidelines in the US and the UK, and patient reports of iatrogenic harm, the RACGP guideline, Incremental physical activity for chronic fatigue syndrome/ myalgic encephalomyelitis, should be withdrawn immediately."

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Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients?

www1.racgp.org.au/ajgp/2026/ma...

Screenshot from Science for ME weekly update

#MEcfs #CFS

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“(Contd) They must move away from the idea that activity is dangerous, and instead say that activity is necessary and important, it provides safe exploration of activity, instead of it feeling dangerous. Severity does not mean anything for carrying out treatment.”

#MEcfs #CFS #PwME #CFSME

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From the Irish ME/CFS Association:
We were delighted to get another grant for core funding of €3000 last week from the Hospital Saturday Fund following an application Tom Kindlon made earlier in the year.
The Hospital Saturday Fund gets its funds from Hospital Saturday Fund health plans. Medical charities can only get funds once a year so we will of course need to be careful how we plan to use it. 
In photo: Vera & Tom Kindlon, committee members of the Irish ME/CFS Association, an all-volunteer organisation.
Photo was actually from 2020: they transferred the money this year so we don't have one of those envelopes with their name on it. 
The Hospital Saturday Fund
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME Tom Kindlon-pwme

From the Irish ME/CFS Association: We were delighted to get another grant for core funding of €3000 last week from the Hospital Saturday Fund following an application Tom Kindlon made earlier in the year. The Hospital Saturday Fund gets its funds from Hospital Saturday Fund health plans. Medical charities can only get funds once a year so we will of course need to be careful how we plan to use it. In photo: Vera & Tom Kindlon, committee members of the Irish ME/CFS Association, an all-volunteer organisation. Photo was actually from 2020: they transferred the money this year so we don't have one of those envelopes with their name on it. The Hospital Saturday Fund #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME Tom Kindlon-pwme

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Longer message regarding the €3000 core funding grant that we were delighted to receive this week from the Hospital Saturday Fund

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE

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Photo of Vera and Tom Kindlon

Photo of Vera and Tom Kindlon

Delighted to receive a €3000 core funding grant from the Hospital Saturday Fund this week.

Will be very useful as there has been relatively little fundraising for us in recent times

In photo: Vera Kindlon & @tomkindlon.bsky.social

Longer message in next post

#MEcfs #CFS #MyalgicE #PwME

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“(Contd) Rapid changes can occur when the patient becomes curious about new ways of thinking about the disease.”

You would think doctors shouldn’t be spouting unevidenced rubbish in a court room like this!

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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Nav’s consulting physician “said that absolutely everything that can be thought of as leading to improvement should be tried. You have to be open to other techniques and ways of thinking, when what you have already tried does not work, she said. (contd)”

#MEcfs #PwME #CFS

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Nav’s consulting physician “talked a lot about “motivation,” and that a lack of faith in treatment would cause it to not work. I took it as meaning that the family and Kolbjørn lacked motivation, which was why he was still sick.”
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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“And yes, they’re often unglamorous. A chair. A timer. A routine that looks boring on paper. But boring, in this context, can be a gift. Predictability can be a form of care. Ease is a strategy.

Small changes are how capacity returns. (contd)”

#mecfs #longcovid #pwme #cfs

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Nav’s consulting physician, Ingvild Damskog: “believed that there are “many” who recover. When Anne Kielland asked why these recoveries were not visible in the statistics, she could not answer.”

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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“That can be uncomfortable. Sometimes it brushes up against grief. Sometimes it requires renegotiating old beliefs about strength and resilience and what “trying hard enough” is supposed to look like.”

#LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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Nav’s consulting physician: “believed that activity matching does not work, they do not see the effect of it (and have thus missed the point that it is a coping strategy, not a treatment).”

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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“Saving energy isn’t about doing less with your life. It’s about creating the conditions where life can actually happen. Where your body isn’t spending everything it has just to keep up with unnecessary demands & where participation doesn’t require a crash afterward.”
#MEcfs #PwME #CFSME #CFS

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NAV’s lawyer:
“(Contd) People who believe in the biomedical model are just waiting for a pill, he claimed, & they are not open to other approaches, or motivated to try. “If they continue as they are now, he will never recover!”

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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“(Contd) (according to the lawyer, a view shared only by a small, peculiar group, and contrary to “general opinion”), which meant that they did not seek documented effective treatment* in the public health system”

*Comment: rehab/CBT/GET approaches are not evidence-based

#MEcfs #CFS #PwME

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Preview
a man is sitting in a chair with a bowl of popcorn in his lap . Alt: a man is sitting in a chair with a bowl of popcorn in his lap .

Sorry to hear that buddy. I'm not feeling great either. Hope the fatigue eases for you. 🫂
#CFS #pwME

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Pipeline-optimized machine learning for chronic fatigue syndrome diagnosis: A lightweight, interpretable model using blood biochemical and metabolomic data — Li et al.
UK Biobank data, with self-reported diagnosis. "Our analysis reveals that total protein (TP), vitamin D (VD), total bilirubin (TBIL), urea, and alkaline phosphatase (ALP) are the five biomarkers with the highest contribution to the prediction of CFS risk."

Pipeline-optimized machine learning for chronic fatigue syndrome diagnosis: A lightweight, interpretable model using blood biochemical and metabolomic data — Li et al. UK Biobank data, with self-reported diagnosis. "Our analysis reveals that total protein (TP), vitamin D (VD), total bilirubin (TBIL), urea, and alkaline phosphatase (ALP) are the five biomarkers with the highest contribution to the prediction of CFS risk."

Pipeline-optimized machine learning for chronic fatigue syndrome diagnosis: A lightweight, interpretable model using blood biochemical & metabolomic data

www.sciencedirect.com/science/arti...

Screenshot from Science for ME update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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Some people with Long COVID and ME have found SGB to be helpful while others have found no effect or a worsening of symptoms. Dr Zeest Khan, an anesthesiologist and Long COVID patient/advocate, has posted a very helpful video that covers the procedure, how it works, what symptoms may be improved, the side effects and risks, and her own personal experience with SGB. She also recorded a podcast about SGB. Both can be found on Dr. Khan's website.

Some people with Long COVID and ME have found SGB to be helpful while others have found no effect or a worsening of symptoms. Dr Zeest Khan, an anesthesiologist and Long COVID patient/advocate, has posted a very helpful video that covers the procedure, how it works, what symptoms may be improved, the side effects and risks, and her own personal experience with SGB. She also recorded a podcast about SGB. Both can be found on Dr. Khan's website.

Stellate Ganglion Block (SGB)

longcovidmd.com/videos

Screenshot from Massachusetts ME/CFS & FM Association March 2026 Newsletter
massmecfs.org/resources/ne...

Comment from Tom: I haven't looked at this video or listen to the podcast myself so far.

#LongCovid #MEcfs #CFS #PwME

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Long COVID and ME/CFS on the Front Page of the Boston Globe

The Boston Globe ran an excellent front-page story by Felice Freyer about Samantha Crausman of Rehoboth MA, who has severe Long COVID and ME/CFS. The article quotes Lucinda Bateman of the Bateman Horne Center and Amy Proal of PolyBio Research. We're sure any reader of this newsletter will identify with this quote from Samantha's physician father, Dr. Rob Crausman: "If I have one more person tell me that she just needs to do yoga, I will lose my mind." 

 

Please Note: The article is behind a paywall for Boston Globe digital subscribers only, but we felt it was important to include for ME/CFS awarenerss.

Long COVID and ME/CFS on the Front Page of the Boston Globe The Boston Globe ran an excellent front-page story by Felice Freyer about Samantha Crausman of Rehoboth MA, who has severe Long COVID and ME/CFS. The article quotes Lucinda Bateman of the Bateman Horne Center and Amy Proal of PolyBio Research. We're sure any reader of this newsletter will identify with this quote from Samantha's physician father, Dr. Rob Crausman: "If I have one more person tell me that she just needs to do yoga, I will lose my mind." Please Note: The article is behind a paywall for Boston Globe digital subscribers only, but we felt it was important to include for ME/CFS awarenerss.

Long COVID and ME/CFS on the Front Page of the Boston Globe

www.bostonglobe.com/2026/02/20/m...

Screenshot from Massachusetts ME/CFS & FM Association March 2026 Newsletter
massmecfs.org/resources/ne...

#LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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George and his ME/CFS

3-panel cartoon

1st panel:
George puts on his fitbit and has this thought bubble: "ahh… The fit bit my doctor recommended! This should help me avoid postexertional malaise".
In the background you see a postal delivery person walking back to their van


2nd panel:
next morning…
We see George getting out of bed in his pyjamas with this thought bubble "it's set to beep when my heart rate reaches 110… When I need to stop and rest…"


3rd panel:
George is still in his bedroom and his pyjamas but now standing up and is fitbit peeps 3 times

George and his ME/CFS 3-panel cartoon 1st panel: George puts on his fitbit and has this thought bubble: "ahh… The fit bit my doctor recommended! This should help me avoid postexertional malaise". In the background you see a postal delivery person walking back to their van 2nd panel: next morning… We see George getting out of bed in his pyjamas with this thought bubble "it's set to beep when my heart rate reaches 110… When I need to stop and rest…" 3rd panel: George is still in his bedroom and his pyjamas but now standing up and is fitbit peeps 3 times

5/
More from a series of comic strips about life as a person with ME/CFS.

"George and His ME/CFS"

🎨Rick Menard

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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Hope to see a few of you at this 👋.

#MEcfs #LongCovid #CFS #PwME

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Informal ME/CFS social meet up in Dublin
2:30 PM-4 PM Friday, March 27
The Bell Bar & Restaurant, Dublin 15, D15 EW77 https://www.thebell.ie
All welcome incl. relatives & people with long Covid
Buy your own food +/or drink
Register for any updates (in case cancelled - hasn't happened so far): tomkindlon@irishmecfs.org Photo of Tom Kindlon
Irish ME/CFS Association for Information. Support & Research logo

Informal ME/CFS social meet up in Dublin 2:30 PM-4 PM Friday, March 27 The Bell Bar & Restaurant, Dublin 15, D15 EW77 https://www.thebell.ie All welcome incl. relatives & people with long Covid Buy your own food +/or drink Register for any updates (in case cancelled - hasn't happened so far): tomkindlon@irishmecfs.org Photo of Tom Kindlon Irish ME/CFS Association for Information. Support & Research logo

Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Friday, March 27

Hopefully we’ll see some of you there
irishmecfs.org/blog/friday-...

Carers/parents/similar welcome.

#MEcfs #LongCovid #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
2 Comments / By David Tuller / 13 March 2026
By David Tuller, DrPH

A recent disability case in Norway provides a good example of why the draft of a new guideline for “long-term fatigue—including ME/CFS” is so problematic.

Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS” 2 Comments / By David Tuller / 13 March 2026 By David Tuller, DrPH A recent disability case in Norway provides a good example of why the draft of a new guideline for “long-term fatigue—including ME/CFS” is so problematic.

Very sad to read of this 23-year-old with severe ME, ill since age 4.

Authorities are trying to claim that improvement/recovery is possible with the right attitude! ☹️

An example of the problem biopsychosocial models for ME/CFS cause.

virology.ws/2026/03/13/t...

#MEcfs #PwME #CFS #SevereME

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I try really hard not to get into the absurd "thin" culture in the US, but I think my weight gain is a real health concern. I am not doing this to help with my Chronic Fatigue, but rather to mitigate the damage from being inactive. #NEISvoid #CFS

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Do people with Chronic Fatigue and other Chronic Illness have tips for how to lose weight when you have Chronic Fatigue or a Chronic Illness? It is difficult to cook, and I can't order those fancy meal plans. #NeisVoid #CFS

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Today is my coronaversarry. Six years straight of being sick with Covid/long Covid.

Terrible irony to be sick again for it

Just trying to keep breathing

#Covid
#LongCovid
#FirstWave
#NotRecovered
#MillionsMissing
#ME
#CFS
#PASC
#POTS

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Preview
Chicago Global Azure 2026: Call for Speakers Chicago Global Azure 2026Global Azure is an annual event organized by the worldwide Microsoft Azure community. Chicago Global Azure 2026 is a local ev...

The call for speakers is open for Chicago Global Azure 2026. It is on Friday, April 17 at the Microsoft Chicago office.

https://sessionize.com/chicago-global-azure-2026/

If you're considering submitting and want to sanity-check an idea, reply here or reach out.

#GlobalAzure #Azure #CFS

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For me personally, this is disappointing on several levels:
 • As a scientist, because it limits the opportunity to test treatments that could potentially help patients.
 • As a representative of the broader field of Post-Acute Infection Syndromes (PAIS), because excluding the most promising candidates raises questions about how effectively the available €3.5 million is going to be spent.
 • And also on a personal level, as a family member of an ME/CFS patient, because this means that a major opportunity to test promising treatments for ME/CFS in the Netherlands may not materialize in the foreseeable future.

I would like to sincerely thank everyone involved in preparing for this call (both scientists and patients) who invested enormous effort in reviewing biomedical literature, discussing possible treatments, and providing feedback from the patient community. That work will not be in vain.

Progress in ME/CFS research has always required persistence. This moment is disappointing, but we will continue our search for effective treatments, one way or another.

More information about the call: https://lnkd.in/e2eqxpAp
Promising medicines for ME/CFS: call for drug repurposing

For me personally, this is disappointing on several levels: • As a scientist, because it limits the opportunity to test treatments that could potentially help patients. • As a representative of the broader field of Post-Acute Infection Syndromes (PAIS), because excluding the most promising candidates raises questions about how effectively the available €3.5 million is going to be spent. • And also on a personal level, as a family member of an ME/CFS patient, because this means that a major opportunity to test promising treatments for ME/CFS in the Netherlands may not materialize in the foreseeable future. I would like to sincerely thank everyone involved in preparing for this call (both scientists and patients) who invested enormous effort in reviewing biomedical literature, discussing possible treatments, and providing feedback from the patient community. That work will not be in vain. Progress in ME/CFS research has always required persistence. This moment is disappointing, but we will continue our search for effective treatments, one way or another. More information about the call: https://lnkd.in/e2eqxpAp Promising medicines for ME/CFS: call for drug repurposing

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Disappointing information about ME/CFS treatment trial fund in the Netherlands

#CVS #MECVS #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

www.linkedin.com/posts/jdendu... @drdendunnen.bsky.social

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Jeroen den DunnenJeroen den Dunnen
   • 2ndVerified • 2nd
Head of Department of CIMM at Amsterdam UMC (location AMC)Head of Department of CIMM at Amsterdam UMC (location AMC)
3d •  3 days ago • Visible to anyone on or off LinkedIn

Follow

With considerable disappointment, our team has decided not to submit a proposal for a clinical trial in ME/CFS in the upcoming ZonMw call. I would like to briefly explain why.

For those who may not be familiar with the background: after many years of advocacy by ME/CFS patients and patient representatives, the Dutch government initiated the ME/CFS Research Program in 2021, coordinated by ZonMw. Initially, this program focused on preclinical research. Following strong requests from both patients and scientists, ZonMw has now also opened a clinical funding round in 2026, aimed at testing promising drugs through repurposing.

In preparation for this call, clinicians, scientists, and patients worked closely together over the past year to identify the most promising candidate drugs for ME/CFS. This collaborative effort resulted in an extensive overview of potential treatments compiled by Technopolis, which accompanies the call as a source of inspiration.

However, when the call was published on 30 December 2025, it came as a surprise to many in the community that almost none of the “most promising candidate drugs” listed in this report are eligible for testing.

The reason is that the call only allows drugs without an active patent in the Netherlands. According to ZonMw, this requirement was included to help ensure that future healthcare costs remain manageable. At the same time, it is notable that patented drugs are allowed in our ongoing clinical trial for Long COVID.

For our team, this restriction means that the drugs we had been preparing to investigate for ME/CFS (many targeting autoimmune mechanisms, e.g. daratumumab) are not eligible under the current call.

Jeroen den DunnenJeroen den Dunnen • 2ndVerified • 2nd Head of Department of CIMM at Amsterdam UMC (location AMC)Head of Department of CIMM at Amsterdam UMC (location AMC) 3d • 3 days ago • Visible to anyone on or off LinkedIn Follow With considerable disappointment, our team has decided not to submit a proposal for a clinical trial in ME/CFS in the upcoming ZonMw call. I would like to briefly explain why. For those who may not be familiar with the background: after many years of advocacy by ME/CFS patients and patient representatives, the Dutch government initiated the ME/CFS Research Program in 2021, coordinated by ZonMw. Initially, this program focused on preclinical research. Following strong requests from both patients and scientists, ZonMw has now also opened a clinical funding round in 2026, aimed at testing promising drugs through repurposing. In preparation for this call, clinicians, scientists, and patients worked closely together over the past year to identify the most promising candidate drugs for ME/CFS. This collaborative effort resulted in an extensive overview of potential treatments compiled by Technopolis, which accompanies the call as a source of inspiration. However, when the call was published on 30 December 2025, it came as a surprise to many in the community that almost none of the “most promising candidate drugs” listed in this report are eligible for testing. The reason is that the call only allows drugs without an active patent in the Netherlands. According to ZonMw, this requirement was included to help ensure that future healthcare costs remain manageable. At the same time, it is notable that patented drugs are allowed in our ongoing clinical trial for Long COVID. For our team, this restriction means that the drugs we had been preparing to investigate for ME/CFS (many targeting autoimmune mechanisms, e.g. daratumumab) are not eligible under the current call.

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Disappointing information about ME/CFS treatment trial fund in the Netherlands

#CVS #MECVS #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

www.linkedin.com/posts/jdendu... @drdendunnen.bsky.social

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