ME/CFS research

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.

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.

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

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.

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

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

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

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.

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

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

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

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

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.

1) 🇰🇷 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.

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

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.

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

Odd to not have a noninfected control group.

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.

68.2% recovered with placebo!

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/...

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."

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.

1) 🇩🇪 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.

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

And wouldn't factors such as activity levels affect mitochondria gene expression?

1) This study scanned existing ME/CFS datasets on gene expression and proteomics to look for common genes or patterns. The mitochondrial genes MT-RNR1 and MT-RNR2 had lower expression in ME/CFS cases in two studies.

Unfortunately, the results don't look very robust...

Remember this Dutch study on Lidocaine injections for Long Covid? A newsarticle now reports that the research was conducted without ethical approval.

ftm.nl/artikelen/po...

My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’ The long read: I suffered with my mystery illness for decades before gaining a diagnosis. Could retraining my brain be the answer?

My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’

We already have archive.org for archiving. The problem is paywall bypassing, which is tricky and potentially copyright violation.