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And the cost is very high. So it would affect you FC and QoL when you give up other activities.

Frequent feedback by the participants of the focus groups concerned activity pacing as an element missing in the preliminary intervention manual. Because of its symptomatic overlap with ME/CFS [50], pacing has been discussed as a coping strategy for Long COVID. Currently, research into the...

Bernd Löwe: He is President of the German College of Psychosomatic Medicine (DKPM) (unpaid) since March 2024 and was a member of the Board of the European Association of Psychosomatic Medicine (EAPM) (unpaid) until 2022. He is member of the EIFFEL Study Oversight Committee (unpaid).

However, selection biases must be taken into account when interpreting the results. First, a significant proportion of the sample was recruited from the psychosomatic outpatient clinic at the UKE, i.e., patients who have already actively presented in a psychosomatic setting, meaning that the...

https://www.remissionbiome.org/about/protocol-overview This so-called self-experimenting is being labeled as patient-led research. I can understand why someone would go down that rabbit hole, but it seems quite unsafe and unethical.

So when something interacts with a cell, it stores the ‘instruction’ in an internal memory structure? And that structure gets stuck in one state, like not being able to overwrite the memory of a computer? So you keep running the same code on repeat. Or are the memories of the instructions more...

It was not my intention to claim that is was your intention. I’m a bit defensive here even though I respect and appreciate your analysis. Of course not. But why did they go with the BPS lobby in the first place if both are equally ridiculous? It seems like they belive that the patients are...

What if the persistent claims are there because nobody believed them from the start (edit: before the claims)? And the claims of the patients are no more ridiculous than the claims of the BPS-lobby, and plenty of other reseachers and doctors.

Thank you! If something external (to the cell) ‘instructed’ the cell to enter e.g. a ‘defensive’ state, could ‘deviations’ in this gene lead to a reduction in the ability of the cell to get out of that state? Or could it be more like a bug in a code that leads to a incorrect deployment of an...

I believe this might be the study they replicated: https://www.s4me.info/threads/genetic-risk-factors-for-severe-and-fatigue-dominant-long-covid-and-commonalities-with-me-cfs-identified-by-combinatorial-analysis-2023-taylor-et-al.34243/

Would you br able to translate it into laymans terms?

I’d rather say that the lies, gaslighting, and abuse by the BPS-lobby is entirely the fault of the BPS-lobby. They could just as well have said «Even though we can’t find anything wrong, we still believe you when you tell us what makes you worse. We’ll do our best to accommodate your needs if...

@mango good point. They use an ME/CFS diagnosis to predict no findings. And they also use it as a proof that ME/CFS has to be psychological. That’s like saying «All grass is green. The car is green, therefore, the car is grass.» And it doesn’t account for potential future findings.

It would have to predict something meaningful for ME/CFS, though. And that’s where the current models struggle. But yes, I agree with the correction. Although a model can give the correct prediction based on the wrong reasoning. If you predict that apples fall to the ground because the sun...

Are there no abnormalities at all, or are there some that we can’t attribute to ME/CFS? I read it as the former. Would that still be correct?

This isn’t going to stop the BPS lobby’s lies. They already lie about risks in their ethics applications. Hopefully it will lead to more awareness emong patients.

To test the non-existent biomarkers related to SGB or ME/CFS or both. It ties into the reason for doing the trial in the first place.

@rvallee the problem isn’t the level of reasoning, but being able to understand why an AI-model gives any given output. This is important to avoid e.g. discrimination.

You’d need to properly justify running it in the first place.

10.5 In conclusion, on the validity of the study The basic assumption about what causes PEM/PESE thus influences the choice of study population and outcome measures, which in turn systematically affects study results and perceptions of the generalizability of the results, i.e. the validity of...