ME/CFS research

A data infographic from the Open Medicine Foundation estimating the lifetime prevalence of ME/CFS, stating that 1 in 29 people will experience ME/CFS in their lifetime, totaling over 279 million people globally, with a breakdown table showing Pre-COVID ME/CFS, Long COVID, Post-COVID ME/CFS, and Total ME/CFS figures for the United States, Australia, Canada, and globally.

🧬Science Wednesdays: Estimating Lifetime Prevalence of #MECFS

Based on published research, the lifetime prevalence of ME/CFS is over 279 million people, which is around 1 in 29. 🔗 Read more about lifetime prevalence of ME/CFS: https://ow.ly/iR4q50Ysroa

opposite effects: one shows increased TSPO in patients and the other shows reduced.

But even the PET (TSPO?) studies aren't very specific. TSPO is elevated during stress, anxiety, depression, learning, etc. It's not really inflammation per se, just microglia activation, which happens during intense brain activity. Also, the two TSPO studies that have been done seem to show

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.

reviews in my blog post above).

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

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

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...

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

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/...