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I don’t view the questions as details - they are at the core of that part of the research. Not wanting to over rule the «experts» sounds like an excuse to not check on the work or to not speak up. I know it comes at a personal cost to intervene, but we can’t just accept bad research practices...

@MelbME Have you read all of the questions in BASC-3 as a part of the preparations for this study?

Or can’t afford to get care or to adhere to the treatments - it’s the US after all. And treatments of what exactly?

Too wide definitions? If that’s the case, the activity level might be very important. Nice catch!

6C20 Bodily distress disorder Bodily distress disorder is characterised by the presence of bodily symptoms that are distressing to the individual and excessive attention directed toward the symptoms, which may be manifest by repeated contact with health care providers. If another health...

I’m not a child and I’m correctly diagnosed. My parents would still classify me as severly mentally ill according to this form. You don’t need the last part for this form to make no sense at all, even though it would make this even worse.

What’s with the psych field’s obsession with «excessive» behaviour? How would you even define the threshold for excessive - do you have to define it for every illness? The more I learn about psych, the worse it gets.

What?! They are planning on giving data from the study to the participant’s GP? What’s the purpose? Why and/or how would that benefit the study or the participants? Is this normal? Why is the GP involved at all? I’m very confused.

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.