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Kudos to the authors for not saying ME/CFS = Fatigue. They used CCC, with the DePaul questionnaire as criteria. Interesting study.

I got a reply from someone working on the study. The depression questionnaire is the Patient Health Questionnaire-8 (PHQ-8) Which is has already been critiqued as ill-fitted for Long COVID and ME, and has been used in other problematic studies like: * Depressive and anxiety symptoms in current...

A while ago, @forestglip found a reddit thread related to Lupus, where one of the most liked answers contained a description from a Lupus patient that sound like PEM:

I thought It would be interesting to have a place to collect descriptions or accounts of living with other illnesses that include phenomena seemingly nearly identical to what we call PEM. For Mitochondrial disease, check out the thread: What differentiates ME/CFS from known primary...

Interesting how high PEM is, and how low loss of sense of smell is. It really shows how perceptions of long COVID are not formed by patients experiences but by what the medical field took seriously, ie. loss of taste and smell, while completely ignoring PEM.

Depending on what happens might test my preference for Celtic football club ahha. In all seriousness, congratulations!

Wonder if this holds using deconditioned/unhealthy/sick controls.

I used visible (which is where the data for this study comes from) for about 4 months and I think there’s two problems with a study like this: 1) Expectancy Bias Visible is literally based around the idea your HRV impacts your PEM threshold. They give you specific scores every day based on your...

Since CBT is “effective” for fatigue in cancer, I guess cancer is “not real but psychological”. The efficacy of cognitive behavioral therapy for cancer: A scientometric analysis, 2022

So basically if I get this right? They did a playacting test, and rated people by how stressed they think they got in the test. Then, they saw that people who seemed more stressed had different levels of a molecule than calmer people? They then assumed this meant the molecule was a marker of...

The way I see it medicine is not a science. It’s a heirarchical culture formed around interpretions on how to apply a science “huaman biology”. In medical training, students are not taught critical thinking or how to slow down and think about things, they are taught how to follow protocols and...

Can’t say I’ve tried it (although the lamp above my bed emits red light because I find it less tiring than white light), but I imagine many of the responses you’d get will be saying that it’s very likely some quakery. If you’d like you could add a poll to your post, might be useful.

Out of my personal experience with doctors, not including those I specifically chose because of knowledge of ME. Sample is about half split between Swiss and Austrian doctors. n=9. Believes it’s psychosomatic (ie. mostly psychological factors): 2 (~20%) Believes is a mix of psychological and...

I can’t believe they can do an entire review of the literature while holding onto the asssumption Long COVID is a single condition and not a bunch of different conditions triggered by COVID… Zero mentions of underlying conditions or subtypes. Zero mentions that one of the most common and...

I won’t make any comments on the various theories, but another way to interpret this, would be that not everyone with ME has orthostatic intolerance, and likely not everyone with OI has hypotension. So if we compare an ME group with controls we might see an increase in hypotension but it...

Sorry I wonder if you made a mistake or I misread your comment. You say they found similar levels of hypertension but then go on to say it is weird because POTS is associated with hypotension? I’m not sure I understand.

Yes. Ignoring the fact most those studies are using diagnostic criteria where many of the patients probably don’t have what we consider ME. All GET/CBT did is teach patients to ignore limits and push themselves further. In the short term, they might have been able to do a tiny bit more, but as...

https://thesicktimes.org/2024/11/26/dont-give-up-hope-long-covid-advocates-and-researchers-say-crucial-work-will-continue-under-trump/ “Don’t give up hope”: Long COVID advocates and researchers say crucial work will continue under Trump A high quality and slightly hopeful although still...

In my experience I have an extremely hard time stabailising at a level where I don’t produce PEM. To the point where in the vast majority of cases I feel like I’m overdoing it and in a sort of constant rolling PEM. I don’t think there’s been a period when I was doing less than I could. And even...

so what this study is saying if I understand correctly is that current ways to measure blood flow problems to the head might be missing out on lots of stuff. Which is potentially of interest to ME since we have lots of lower quality evidence blood flow to the head might play a role, but no...