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Maybe we need an economist / public health expert to write about the insanity of leaving ME/CFS (essentially) unresearched. Money seems to be the language that is understood by those making decisions. The initial motivation to make an essentially psychogenic illness out of ME/CFS seems to have...

I think we will eventually see an uprising by patients hurt by it, and doctors that can't stand seeing medicine being increasingly taken over by this nonsense. Unfortunately psychogenic views are still popular in medicine but there is a limit to everything. There may also be unexpected allies...

The CBT/MUS paradigm is sowing the seeds of its own extinction, just like psychoanalysis did with its ridiculously exaggerated claims in the 60's. Being successful and expanding into more and more areas of medicine also means that more people get the chance to see what this paradigm really...

He teams up with LP coaches. This is probably about money. The recovery network he is involved in apparently popped out of nowhere shortly after new Norwegian law forbidding promotion of unproven treatments for a variety of conditions came into effect (CFS was specifically mentioned). This...

A while ago, Vogt said that patients and researchers were guilty of creating too much hope.

Maybe the 45% is to be understood as target. :eek: I'm pretty sure CBT until the patient loses hope and gives up costs less than rheumatology appointments.

If the results are biased, how can they be clear? Is he talking about large effect sizes? If I remember right PACE didn't have large effect sizes in comparison to the already inadequate control group. I think he may just be making up his own reality.

"We know the illness is your fault. We just have to find out why."

Oh well, Valentijn has posted. Let's hope they are not too startled.

There is a bit of discussion now. One personk thinks that PACE results are hard to ignore, that CBT over Skype could be the norm for future studies, and that there should be a CBT/GET trial for severely affected (he has not heard of FINE apparently). The other person thinks most of the PACE...

It's here I don't know how to find people who think NHS CBT has helped them.

Go here, ask for recovery stories https://www.reddit.com/r/cfsme/ One user wrote Another user claims to have recovered with LP. That's the kind of patients you're looking for. People who really seem to believe in CBT/GET, LP.

@Jonathan Edwards if the situation is similar to NICE recommending homeopathy, maybe we can get some well known skeptics to write about this and reach a broader audience? It won't be easy due to the prejudice surrounding CFS but I like to think that at least some will be able to see that...

I hope that one of these days, one of them is going to be confronted by a knowledgable speaker about their terrible methodology in front of a running camera, in a setting where critical thought and dissent is permitted.

Low energy metabolism results in low drug metabolism which results in stronger than expected effects?

Doesn't Oxford criteria exclude those with neurological signs? This sounds like a permission to exclude many ME/CS patients, because I'm pretty sure that a determined doctor could easily find some neurological abnormalities. I can't walk straight with closed eyes for example (tandem gait test...

It's much easier to understand that PACE is bad if you know how easy it is to get improved responses to health questions. PACE is not the only trial like this, and NICE will find it difficult to accept that the benefit of many other treatments is in doubt as well because of similarly bad...

Thanks Simon. With an eye towards the deadline, are there any plans on how to actually write the document? If multiple people need to cooperate, it can take more time than expected. Maybe it would be a good idea to start on this already, even if just selecting writers?

Didn't Freud say the same about psychoanalysis?

You got it. This one has a few extra surprises though. The timing of assessment varied between the control group and the intervention group, and the authors dismissed the need to collect data on potential harms. Both of these sound highly unusual to me (at least in context of fairly consistent...