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We need to get Carol in here so she can benefit from the discussions and knowledge here.

Yes, but that patients are harmed by GET tells us that even the patients that are harmed by GET are initially willing to believe that GET could help (or would at least not harm them). Illness severity will influence how aware patients are of the connection between activity and subsequent...

How would better advocacy look like? Avoiding a debate around whether it's biological or psychological but instead pointing out that PACE was rubbish, that CBT/GET lack real evidence and are harmful according to patient surveys? Avoiding anecdotes about some other treatment helping and instead...

Their ability to believe in a hypothesis that doesn't fit with the data they're collecting is astonishing.

Is this clinical trial design a fair comparison of a parmacological intervention and CBT? Immunologic and psychologic therapy for patients with chronic fatigue syndrome: a double-blind, placebo-controlled trial. https://www.ncbi.nlm.nih.gov/pubmed/8430715

@Rick Sanchez the article says that this is about illnesses we don't yet understand. Is this really the position of the health authorities? If they really see them as of yet unexplained illnesses, they would have to draw up plans to research them. Or is this just empty rhetoric to mislead...

Full paper (via sci-hub)

If they are forced to acknowledge that the current fear avoidance narrative has been disproved by PEM & CPET literature, then they might change their position to patients experiencing postexertional aggravation of symptoms as result of believing that exertion will aggravate symptoms. Sounds...

The reason they are not good at listening to patients is probably because they decided very early on that patients suffer from a functional somatic syndrome that involves false and/or delusional beliefs about the nature of their illness. What patients say then becomes very easy to ignore.

There's also the fear avoidance theory, according to which it's more the belief that exertion causes deterioration, and that postexertional symptom exacerbation means harm and illness. The PEM and CPET literature seems to have explicitly disproved this, but that's just my view. Whether the...

Is this falsifiable? Would you say that it has been falsified by any studies? I know there was one study that found belief in viral cause vs belief in psychological cause were associated with similar outcomes. Then there's the CPET literature which supports the belief that there exists an...

It's not wrong. They just don't realize that they are fooling themselves with poor methodology and are yet another source of unreliable information, unnecessary and harmful treatments that don't help.

I am wondering whether he formally minimized his involvement to protect himself, while letting others do the dirty work of carrying out a clinical trial that he knew was flawed and biased. He is credited as having advised them on clinical trial design.

People that made a joke out of the illness in the eyes of the public by portraying patients as essentially imagining an illness and not pushing themselves enough complain about unfair criticism and reputational damage. :rolleyes:

Respect for Godwin for being able to keep his friendship with Wessely and critique of PACE separate.

Is he maybe referring to the rationale behind CBT/GET? One cannot disprove the false illness beliefs hypothesis when the patient has an unidentified illness, because disproving could only be done by identifying the actual illness and showing that the beliefs are consistent with it. Or maybe not...

This is similar to what I've been doing in the last six months. Fruit and berry smoothies, and cooked spinach. Can't say it's making a large impact but it does seem to help. It's also delicious. If by any chance I suddenly end up cured, I'll make sure to let you all know :D. I don't do it to...

A higher prevalence of depression and anxiety in the FSS population could be merely the consequence of the "poorly understood" status of these conditions. Patients with poorly understood conditions will find it more difficult to receive appropriate treatment, will encounter more disbelief and...

The placebo response in the treatment of chronic fatigue syndrome: a systematic review and meta-analysis. https://www.ncbi.nlm.nih.gov/pubmed/15784798 Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome? https://www.ncbi.nlm.nih.gov/pubmed/17426416...

The notion that the PACE authors do not know that their treatment is ineffective is not credible. One does not accidentally switch outcomes in a way that inflates recovery figures by a factor of four (If I remember right), then tries everything they can to prevent independent scrutiny that...