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I think the bigger problem is that many patients wouldn't describe their symptoms as fatigue in the first place :-P Hrm ... perhaps the likert score of 0 can be more effectively used to measure bias instead of fatigue? :D

Obviously you haven't met very many Dutch people :expressionless: Generally speaking, you can expect a lot of practicality from a Dutch fatigue clinic (I didn't go to blatant a SOLK clinic), but not a lot in the way of friendliness. My experience was the Dutch clinics are pretty bad, because...

I think this is the strongest argument - it's basic logic, and there's no traps to fall into from using it. It's not "anti-psych," it doesn't risk undermining any other arguments, and literally anyone can understand it. Frankly it's shocking that NICE would define any disease in one manner, and...

But that is pretty much what the description says: And it's unlikely anyone is going to be enthusiastic about the treatments on offer: I think they're being rather naive to be so honest about their service. They're probably used to hanging out with their CBT buddies in an echo chamber and...

I think it would be more along the lines of investing money as a way to eventually spend less money. Going down the wrong path has a lot of costs: hiring the wrong researchers and clinicians, funding the wrong services and research, untreated patients needing benefits (which will get paid by one...

No doubt, but the public is a bit more reactive to having themselves or loved ones medically neglected and killed off by the government.

What a bizarre site. They don't even know what POTS stands for ... the "O" is for "Orthostatic", and they shouldn't be omitting it. Regardless, the problem in ME/CFS is usually a different form of orthostatic intolerance, not POTS. The science is there, and it doesn't support POTS or EDS being...

On the positive side, this policy will fail quickly and spectacularly as soon as it kills a few people. On the negative side, this policy will kill people before it's admitted to be a failure.

The forum is currently structured as being governed by a management committee, with various tasks delegated by it to specific teams (admin, moderation, finances, knowledge resources, etc), so I think we could add a patient review board as basically another team. Similarly, we could solicit...

I find the idea of patient review boards to be especially interesting. Perhaps S4ME could form one? There doesn't seem to be an official definition, but these are a couple descriptions of patient review boards:

I think it's a fairly good article. Token patients benefit no one. I especially liked these two suggestions for making patient-engagement meaningful:

Yes, since the Celebrex wasn't controlled for, their resulting assumptions about viral involvement are very much unwarranted. Hopefully someone will test Celebrex alone versus placebo, and/or versus the Celebrex+antiviral combo if that hasn't been done already.

They'd be awful for me ... oxygen saturation drops a lot if I lie on my back, or even if I lean back sitting in a normal chair.

My experience is that having a university degree has caused a great many researchers and clinicians to grossly overestimate their scientific skills and analytical ability. Those are skills which have to be actively learned, yet they are not learning them, at least in some degrees (psychology...

He does remind me very much of a troll that many of us encountered elsewhere. He would superficially base his arguments on science, but without apparent understanding of trial methodology, and a steadfast refusal to distinguish good methodology from poor methodology. He had formed a biased view...

It looked like Crawley might have written the pediatrics one, from what I recall ... some grammar errors, and it looked like someone wrote it from a personal perspective then went back and changed instances of "I" to the royal "We". But missed one or two :-P

Patients don't need a biomarker to tell the BPS approach to fuck off :-P It doesn't work and that's enough.

I started playing text-based hack-and-slash games in the 1990's, where the general view was that female characters were created to get free equipment from other players in exchange for being groped. Fortunately that was easily sorted out by stabbing people in the face a lot :emoji_hugging:

Why restrict the anonymized data to "bona fide" researchers, when it was collected by unethical hacks with no respect for the scientific process? Surely if us filth-encrusted citizen-scientists get something wrong, the real scientists (not these ones) can set us straight Confidentiality of...

Himalayan white-browed rosefinch :cool: