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It’s still possible to make a reasonable judgement on how well a questionaire and its results matches with how the patient group understands and experiences their illness. I’m not talking about physics levels of calibration. Calibration means something completely different in qualitative...

That’s grim.

Can you elaborate on both of those claims? Why and how would muscles care about your autonomic state, and why and how does mindset determine the autonomic state?

Good on them for publishing mostly nothing-results and not overselling.

This. It should not be required in the first place. That being said, I can understand why some patients would prefer to work this way.

Are the scales calibrated or verified with regards to the unique characteristics of PEM? There’s a reason FUNCAP was created - PEM does not fit with most models of how disease and the body works. This is not very encouraging. The research standards for both the neuro and psych fields are...

@Trish I completely agree with you. I was thinking about getting scientific «proof» that non-pacing is harmfull. We all know it, but all of the studies are worthless, so we can’t use them as proof of anything, even that non-pacing is ineffective. The current state is that we have no useable...

Can we use studies on non-pacing behavioural interventions to show that there is a dose-dependent relationship between non-pacing activities and worse health outcomes? If we could prove that not pacing is bad, and that it is worse to pace less, then avoiding non-pacing (i.e. actually pacing)...

Do they fully understand what severe Long Covid can mean? Exclusion criteria: Blood clotting conditions Do they check for clotting issues that some pwLC report? Most would probably be undiagnosed.

Selective reporting and a bit of data torture will get you a result.

I don’t agree with that interpretation in general, but I can understand why someone with ME/CFS would be very wary of victim blaming. I have a close friend that’s genetically predisposed to cancer, I can’t think or any situation where she would be blamed for getting cancer.

I have zero confidence in the governments of the world’s ability to handle this properly. Protect yourself and your loved ones.

Are there any reasonably accessible (for patients) ways to test for these genes?

Is it proven that >10 day infections become chronic in general, for Covid-19 or for any of the other mentioned infections? They use both PACS and Long COVID (LC), and I don’t understand what they mean with either. The phone won’t let me copy any more text, but figure 1 seems to define LC as...

It sucks - I’m sorry you experience it as well. They also don’t understand how traumatizing gaslighting has been and why I’m extremly critical of anything that’s being said about me or my illness. Even though I’m bedbound because of the gaslighting. I don’t over-focus or catastrophize, I...

When can it be justified as a part of care? My personal experience as a 29 yo «child» to my parents is that every single question from healthcare workers to my parents about my mental health has created enormous issues for me. I had to get my therapist (phd) to write a statement to get them...

Yeah, I think you’re right. I might have jumped to conclusions, I believe I googled LDH Leukemia and found that elevated LDH was a poor sign, and therefore thought that normal LDH was good. My bad!

Does anyone have any info about dosing?

Really, really important message. For 99 % of people in my life, I only exist through my phone. I have not physically met anyone since July except for my parents, sisters and medical staff.

Could a higher selection be dependent on genetic mutations like above? It seems to be beneficial for certain types of cancer according to my googling. Plausible? This is what happened in the study at the beginning of this comment.