Tom Kindlon (@tomkindlon) — Bluesky Profile

41 minutes ago

The proponents of biopsychosocial models of ME/CFS make me so bloody furious, they have caused such harm. I hope when the physical cause is finally discovered, every single one of them is forced to publicly apologise but I know they’ll just go on to torturing the next vulnerable patient group.

4 2 0 0

2 hours ago

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

12 2 1 1

2 hours ago

6/
“When capacity is finite (& always it is, for everyone, whether we admit it or not) every small demand carries weight. What looks trivial on the surface becomes consequential underneath. Saving a small amount of energy in one place can mean having a little more available somewhere else”
#MEcfs

1 0 0 0

1 day ago

Trial By Error: Why is Professor Crawley Still on the COFFI Steering Committee? | Virology Blog By David Tuller, DrPH Several years ago, the leaders of the biopsychosocial ideological brigades decided to create the Collaborative On Fatigue and related ...

Why is the methodologically and ethically challenged Esther Crawley still listed as a member of COFFI's steering committee? Given her retirement, why hasn't COFFI bothered to update its site? Can an organization so lax on detail even be taken seriously? virology.ws/2026/03/12/t...

6 3 0 0

5 hours ago

News Release 12-Mar-2026
Trial finds vitamin D supplements don’t reduce covid severity but could reduce long COVID risk
Peer-Reviewed Publication
Mass General Brigham

FacebookXLinkedInWeChatBlueskyMessageWhatsAppEmail
Mass General Brigham study results signal a call to do further research into the connection between vitamin D supplementation and long COVID

In a large, randomized trial, researchers at Mass General Brigham have found that high-dose vitamin D3 did not reduce COVID-19 infection severity, but may impact long COVID outcomes. Results of the study are published in The Journal of Nutrition.

“There’s been tremendous interest in whether vitamin D supplements can be of benefit in COVID, and this is one of the largest and most rigorous randomized trials on the subject,” said senior author JoAnn Manson, MD, DrPH, of the Mass General Brigham Department of Medicine. “While we didn’t find that high-dose vitamin D reduced COVID severity or hospitalizations, we observed a promising signal for long COVID that merits additional research.”

News Release 12-Mar-2026

Trial finds vitamin D supplements don’t reduce covid severity but could reduce long COVID risk

www.eurekalert.org/news-release...

Paper:
jn.nutrition.org/article/S002...

#LongCovid #PASC #COVID19 #COVID #novid #postcovid #postcovid19

4 1 0 0

6 hours ago

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

3/
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

3 1 0 0

6 hours ago

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.

2/
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

5 2 1 0

6 hours ago

Very disappointing news from the Netherlands

In the Dutch newspaper the Volkskrant this article.

Translation;

Expensive medications excluded from research into fatigue syndrome in advance.

Promising medications for chronic fatigue syndrome cannot be researched because they are too expensive.

ZonMw that distributes research funding on behalf of the government, will at this time only fund researchers if they test medications that are no longer under patent.

This should avoid high cost and legal issues.

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

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

1/

12 3 3 0

17 hours ago

ME Association Rosetta Stone Study – Summary: Three month update

meassociation.org.uk/2026/03/rose...

www.youtube.com/watch?v=Q53V...

Screenshot from Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

3 2 0 0

17 hours ago

In Case You Missed It

The federal funding bill passed in February extended the Medicare teleheath program until December 31, 2027. This ensures that COVID-era telehealth flexibilities will continue — at least for now — providing continuity of care for those who have come to depend on virtual appointments. You can find all the details here.

Also in February, Congress directed the NIH to develop an implementation plan for the ME/CFS Research Roadmap within 180 days. The comprehensive Roadmap was developed by a working group of patients, advocates, researchers, and clinicians, who delivered their report in 2024. Congress's direction does not guarantee funding for the Roadmap, but it does require the NIH to clearly outline how the plan will be implemented. Kudos to #MEAction and #NotJustFatigue for their advocacy work on this.

(USA) "The federal funding bill passed in February extended the Medicare teleheath program until December 31, 2027"

telehealth.hhs.gov/providers/te...

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

#MEcfs #chronicillness #Spoonie

3 3 0 0

18 hours ago

George and his ME/CFS

3-panel cartoon

1st panel:
Welcome to our support group. How long have you had ME/CFS?
6 months… Just been diagnosed.
Other members of support group wave to the new person

2nd panel:
My doc says I should recover in 2-3 years. How long have you been ill?

3rd panel:
Existing members have support group:
25 years
10 years
36 years
16 years

4/
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

7 2 0 0

22 hours ago

Best of luck to Lee for Saturday. 👏

Background information on why Lee is so passionate here:
www.awalkforme.com

I've just donated to his fundraiser here
www.idonate.ie/fundraiser/L...

12 7 0 0

23 hours ago

The US Surgeon General has announced the launch of a new long Covid hub

www.hhs.gov/longcovid/in...

#LongCovid #PASC

15 5 2 0

1 day ago

Photo of someone looking distressed
12 MAY
INTERNATIONAL
ME/CFS
AWARENESS DAY
IT'S NOT JUST FATIGUE
Physical and mental exhaustion | Severe muscle and joint pain | High heart rate | Nausea | Dizziness | Very low blood pressure | Difficulty breathing | IBS | Fever | Unrefreshing and disturbed sleep | Night sweats | Sensitivity to light, noise and touch | Sensitivity to foods, chemicals, odours and alcohol | Brain fog | Poor
memory & concentration...
WWW.MECFSSA.ORG
THE ME CFS FOUNDATION SOUTH AFRICA

Two months to go.

A great opportunity to raise awareness and understanding. Also the day (and the associated awareness week/month) can be used for lobbying, fundraising, and other forms of activism.

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

8 5 0 0

4 days ago

Walk for ME 2026 is up and running & we’d love for as many people to get involved this year as possible!
The idea behind Walk for ME is that the friends & family of an ME sufferer do a sponsored walk on their behalf, hence the name Walk for ME. www.justgiving.com/team/walkforme2026
#W4ME

4 3 0 0

1 week ago

"Those with ME have experienced years of being treated unjustly. Sometimes, it feels endless and irreversible. But remember this: getting things done in parliament starts with having MPs on your side." Tessa Munt MP. New #ThereForME Substack post.

We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt.bsky.social.

In her blog, Tessa lays out the case for change and how to get involved.

Link in next post 👇

29 16 2 1

1 day ago

Graphic shows image of a scientist with text: ME Research Seminar, from rare cancers to ME and long Covid: a new model for research in neglected disease. Join us and share your views on a proposed new research project. Thursday 26 March, 17:00-18:00

🔬 Join us for a seminar hosted by Action for ME and Consilium Scientific exploring a new international initiative that could break the cycle of neglect in ME research:

📅 26th March, 5pm GMT
📍 Online

🔗 Sign up here: mailchi.mp/consilium-sc...

3 2 0 0

5 days ago

9) A staged assessment protocol with rest periods and the option to pause/terminate procedures is used to minimise the risk of PEM during data collection.

The goal is to determine which procedures and measurements work in severe ME/CFS to inform future studies

16 3 1 0

5 days ago

3) They also note that home-based testing could lead to more reliable measurements: "Home-based assessments may reduce noise from clinic-induced stress, providing more ecologically valid data."

15 3 1 0

5 days ago

2) The authors argue that this is urgently needed because these patients are often excluded from research:
"A central limitation of the current body of research is the insufficient inclusion of patients with severe and very severe ME/CFS into clinical studies."

18 5 1 0

5 days ago

1) 🇩🇪 This German study will test the feasibility of home-based diagnostics in patients with severe and very severe ME/CFS (Bell score < 30).

They plan to take blood and saliva samples, questionnaires and measurements such as ECG, ultrasound, pupillary responses, HRV, etc.

42 11 2 2

3 days ago

1) "The absence of neuroinflammation markers is consistent with the hypothesis that persistent long-COVID symptoms are unlikely due to ongoing neuronal injury or central nervous system inflammation"

From a Norwegian study that tested 48 LC patients.

26 9 1 0

2 days ago

1) Interesting study showing that a brain infection in mice can lead to loss of synapses and altered excitability of neurons that outlasts the immune response against the virus.

Changes are induced by interferon-gamma and involve epigenetic remodelling in the hippocampus.

17 6 1 0

1 day ago

1) See several problems with the new Long Covid treatment guide by RTHM and Patient-Led Research Collaborative.

- It focuses on a social media survey instead of randomized controlled trials
- It fails to mention several trials that had negative results.

A brief thread 🧵

42 12 1 1

1 day ago

ME/CFS & Long COVID Research Consultation – Center for Computational Genomics and Data Science

If people are interested in being a part of our personalized medicine #MECFS #LongCovid #Genomics research study, we have added additional information on how to go about that here: sites.uab.edu/cgds/mecfs-c...

8 6 0 1

1 day ago

Interesting research project on ME/CFS and Long Covid 👇

"Our research consultation offers a structured, research-focused review [...] The process begins with an in-depth analysis of the participant’s genetic info, focusing on genes and variants of interest."

10 3 1 0

1 week ago

Clip from yesterday’s BBC South report about the #MECFS Alliance event on the future of #MECFS and #LongCOVID research. Sam, an ME patient, says the government failing to fund further research after the success of DecodeME is “absolutely disgraceful”.

26 14 2 1

6 days ago

6 years on from Covid, BBC Look North highlights the ongoing impact of #LongCovid. Reporter Cathy Minton says it’s personal, her husband Tom hasn’t improved in a year. He still can’t care for his toddler or go for walks. @franhaddock.bsky.social says new people continue to get long Covid.

37 19 1 3

3 days ago

#MECFS “is a real hidden illness and it can shrink lives”

Fliss and Rob Shepley spoke on BBC Radio Merseyside about their upcoming Land’s End to John O’Groats cycle ride to raise funds for the ME Association.

They are taking on the challenge for their daughter, who lives with #MECFS

18 3 1 1

1 day ago

NICE committee member Adam Lowe says one person left for personal reasons. It’s not clear why the other two left, but Adam suggests it could be due to external pressure. For example, one member was asked to account for a patient refusing GET because of the draft guideline.

3 2 1 0