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ME/CFS research

@cfsresearch

Interested in research into ME/CFS/MECFS, FND and related conditions. https://medium.com/@cfs_research

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Latest posts by ME/CFS research @cfsresearch

reviews in my blog post above).

09.03.2026 20:17 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0

Yes, both EBV (and other infections) are proven risk factors even in the absence of stress. Infections and stress both affect HPA axis and ANS...infections are physiological stressors.

The HPA axis and ANS dysfunctions do seem to be the most well replicated findings from what I have seen (see the

09.03.2026 20:17 πŸ‘ 0 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

Are you familiar with the nocebo effect? That is essentially what the placebo is doing here; counteracting the nocebo.

09.03.2026 15:46 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Replicated findings in ME/CFS There is quite a lot of discussion around purported biological and other findings in ME/CFS. However, the vast majority of these are…

Stress as a precipitating factor is one of the few replicated findings, and the replicated pathophysiology findings (HPA axis, ANS and NK cell cytotoxicity) are consistent with a dysregulated stress system. medium.com/@cfs_researc...

09.03.2026 15:45 πŸ‘ 0 πŸ” 0 πŸ’¬ 2 πŸ“Œ 0

But its nothing to do with lack of fitness. The core problem is the stress response, which placebo addresses in a way.

09.03.2026 13:33 πŸ‘ 1 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

This fits with what we know about both ME/CFS and LC, in that stress and fear are significant factors, and that treatments that address these factors are effective. This also fits with patient reports of recovery. Essentially the placebo effect.

08.03.2026 23:25 πŸ‘ 0 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0
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Here are the PEM scores: before about 60% of patients had PEM for 10 months. After 2 weeks of placebo, only about 10% had PEM.

08.03.2026 23:23 πŸ‘ 0 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

It matches the stories of recovered patients, who were typically very severe (bedbound for decades, unable to eat food, etc).

08.03.2026 16:41 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0

A lot of patients don't self-experiment, so they don't realise that they don't have PEM any more. Or, they don't realise that PEM tends to be variable. I think that is a large part of why GET and LP work for so many people...they're actually mostly recovered already.

08.03.2026 16:05 πŸ‘ 0 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

They went from about half reporting pem to virtually none, as discussed previously.

08.03.2026 14:20 πŸ‘ 0 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

Those dont explain why people who were sick on average 10 months suddenly mostly recovered in 2 weeks.

08.03.2026 13:35 πŸ‘ 0 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

68% doesnt seem weak. Yes it is subjective, but the symptoms themselves are subjective too.

07.03.2026 22:23 πŸ‘ 1 πŸ” 0 πŸ’¬ 2 πŸ“Œ 0

Without self expermentation its impossible to know if you still have pem. Many patients just assume they still have it but they avoid activity, or dont realise that stress and fear can exacerbate it. Placebo solves both Issues.

07.03.2026 15:16 πŸ‘ 0 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

PEM is another problematic vague defined concept. Many patients think any symptom is pem even if its permanent.

07.03.2026 15:14 πŸ‘ 1 πŸ” 0 πŸ’¬ 2 πŸ“Œ 0

Its vague in that its defined as any persistent symptoms after covid. Even sf36 is problematic as it doesnt take into account prevcovid health.

07.03.2026 15:05 πŸ‘ 1 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

You can see that pem almost disappeared completely. Looks like about half experienced it at baseline, then almost none after 2 weeks of placebo.

07.03.2026 14:43 πŸ‘ 1 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

Yes, but the whole long covid concept itself is vague and problematic.

07.03.2026 14:40 πŸ‘ 1 πŸ” 0 πŸ’¬ 2 πŸ“Œ 0

You can see the questionnaire in the supplemen. it didnt ask if they were feeling better…it listed all possible symptoms, with a score for each.

07.03.2026 14:09 πŸ‘ 0 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0
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1) πŸ‡°πŸ‡· A study from South-Korea shows that Metformin (the diabetes drug) and Ursodeoxycholic Acid (a bile acid) are not effective in Long Covid.

Most patients improved at lot, even those in the placebo group.

07.03.2026 10:42 πŸ‘ 12 πŸ” 8 πŸ’¬ 2 πŸ“Œ 0

Stress (including from the illness itself, fear/worry about your body being damaged, negative/depressing situation), too little activity, or too much activity.

06.03.2026 17:03 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0

Well, when youve been at the same baseline for years, then you identify and work on factors that have been identified by replicated studies as being factors, and then you improve rapidly, it seems plausible that what you did made a difference.

06.03.2026 14:43 πŸ‘ 0 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

Its not blaming anyone, just the reality of how patients recover. How many recovery stories have you read?

05.03.2026 14:08 πŸ‘ 0 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

Odd to not have a noninfected control group.

05.03.2026 14:06 πŸ‘ 3 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0

Sounds like a work-in-progress recovery. The techniques are valid, but it sounds like she used some dubious practitioner who didn't have any qualifications. You don't recover simply by doing some ritual.

05.03.2026 02:20 πŸ‘ 0 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

68.2% recovered with placebo!

04.03.2026 16:45 πŸ‘ 1 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Neither Metformin nor Ursodeoxycholic Acid Effectively Treats Postacute Sequelae of COVID-19: A Randomized Clinical Trial: Annals of Internal Medicine: Vol 0, No 0 Background: There is no proven treatment to alleviate symptoms of postacute sequelae of SARS-CoV-2 infection (PASC), despite its substantial public health burden. Objective: To evaluate the efficacy o...

Neither Metformin nor Ursodeoxycholic Acid Effectively Treats Postacute Sequelae of COVID-19 www.acpjournals.org/doi/10.7326/...

04.03.2026 16:45 πŸ‘ 2 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0
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1) "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 [..] should be withdrawn immediately."

04.03.2026 15:59 πŸ‘ 20 πŸ” 9 πŸ’¬ 2 πŸ“Œ 1
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1) A large study of ca. 2000 ME/CFS patients analyzed post-exertional malaise (PEM) scores and differences between ME/CFS subgroups that mostly experience physical or mental PEM.

This is from Lenny Jason's group in Chicago.

02.03.2026 08:49 πŸ‘ 30 πŸ” 9 πŸ’¬ 1 πŸ“Œ 0
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1) πŸ‡©πŸ‡ͺ This study looked at medical diagnoses in an insurance database that preceded an ME/CFS diagnosis in children and young adults.

For example: bronchitis and sinusitis were positively associated with ME/CFS rates while vaccination or ADHD has a negative association.

28.02.2026 09:01 πŸ‘ 33 πŸ” 7 πŸ’¬ 1 πŸ“Œ 2

The authors have now decided to withdraw the publication:
vu.nl/nl/nieuws/20...

27.02.2026 10:00 πŸ‘ 18 πŸ” 4 πŸ’¬ 0 πŸ“Œ 0