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... sigh ...

She needs to clarify, which she wont want to do, that this is not associated with pathology found in OTHER diseases. We know thousands of things are wrong with us, but what we do not understand is causation or the full impact of these myriad problems. Its a problem with determining...

My understanding is PVFS does include other symptoms, including a post viral cough. The list is short though, or at least any I have read, and I have not read anything about PEM or OI that I recall. However those who want to stretch a definition will possibly come up with reasons. I mean they...

This has been common wisdom for at least two and a half decades. Outliers can resolve up to 5 years. However its not a proven thing that LC, and especially ME, are just PVFS. This hang-up on fatigue is part of the issue. Other things like PEM are very important. How many with both LC and PEM...

Funny, because they get results that show it works for everyone! Regardless of disease. Regardless of objective outcome measures like gainful employment in prior capacity and for prior hours, or activity measures, or fitness. If this were a finance product it would be analogous to a great many...

In considering this view, that its a cohort selection problem, we first have to consider what it is that "works" and how that is determined. I have been considering for years that one of the issues facing medicine is optimization to sub-optimal outcome measures. The second worst area is...

I think SF-36 is generally fine as a tool but subject to over-interpretation. Comparing any two patients, or a cohort, is problematic given how people might interpret things differently. It can only be a rough guide. I think it has a better place over time for a single patient. Is this patient...

I selected useful improvement however the improvement was not major, though detectable, and the cost was high, so I moved my money to a different treatment for a non-ME problem.

There is a disconnect here. Many with LC probably have ME or something related, but probably not all of them. The science debunking the CBT/GET claims, including their own papers, is largely ignored. Some officials, doctors and researchers will claim, I am sure, that while CBT/GET is bad for ME...

We have needed some kind of study like this since the late 90s. I have been waiting. Maybe this isn't the absolute best possible study, but its a step forward. Real criticism (good and bad) will be warranted after we see results. They might find nothing major or they might get bombshell results...

Yes, its one good feature of the US medicolegal system, though not without restrictions. I forget details, I looked into this like a decade ago. Elsewhere the standard for medical cases is high but with good evidence, clear wrongdoing, and not following established procedures, which usually give...

This categorically shows its a bogus study. How any scientist can fall for this is astonishing. The answer, of course, is they are not scientists. They do not understand SD. I wonder if they have even properly read the PACE trial?

Aside from the one example in CFS research of deliberately using SD on SF36PF data I consider this probably accurate here. All the possibilities mentioned here are just that. We can show what is wrong, and where there is an evidentiary trail we can show why, but all other cases on why are no...

I would like to add one more. The methodologies used in this stuff are a kludge of many parts, all thrown together because they increase the possibility of a significant result supporting their hypotheses. They have been doing this for decades. They have been teaching and promoting this. They...

Thanks to Leonard Jason we have known the story for some years. I have said in the past, which probably got dismissed by people I said it to, that CFS (its an old comment before I really emphasized ME) has a suicide rate that is much worse than major depressive disorder. I recall an old study in...

Not for me prior to fully embracing pacing. The higher the reward the more damage it did, as I was motivated to push long after I should have stopped.

I have not much doubt that many with idiopathic fatigue will improve with exercise. There are lots of studies in the past that show this. I am less familiar with depression and exercise, or the use of CBT. I am aware there are different CBT methodologies, and you cannot just equate CBT studies...

We do not know if any study, so far as I am aware, other than the PACE trial, is intentional fraud. I suspect many studies copying the methodology do so because its easier to copy other apparently successful studies. Its biased, its bad or non-science, even pseudoscience, but some percentage...

This alone derails much of what they are saying. You can make a symptom list, but going from that to inferred psychosomatic (actually psychogenic) disease is a failure of reason. You can pose it as an hypothesis, but in more than a century of studies there is yet no study that proves the...

The PHQ-15 questionnaire proves nothing. It has the scientific validity of the same questionnaire being used to prove alien abductions and their weird experiments. Prove to me that it wasn't aliens that caused all this post-Covid-19 stuff, and ME, and every other disease we do not fully...