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This

I think he is just trying to lessen the blow on PACE tomorrow by focusing on "positivity". Manipulating patients again.

They switched to another primary outcome measure. Unsure about details. They make it sound relatively harmless, and it could be legitimate, but could also be a way to inflate the efficacy of the CBT group. I'm not going to look into it because it doesn't interest me that much, but maybe someone...

GET/CBT is recommended in 8 countries.

If claims of efficacy were based on self reported health under these circumstances, then over time as therapies are refined and improved, they would be inadvertently optimized for achieving the biggest distortion in self reported health, rather than the biggest improvement in health. Yes, the...

Sorry to be brutal. This scale is far too complicated. A good scale consists of simple items. Scales are measurement tools, not educational material. People can better learn about severe ME by reading accurate descriptions and real world stories instead of looking at a scale that attempts the...

Rephrasing it: If a therapy is believed to treat an illness by changing the patient's illness beliefs, then one cannot base claims of efficacy on self reported health, because the therapy could merely be changing the patient's illness beliefs without having an effect on health. This is very...

We didn't miss it. Various people here have been saying for a while that CBT/GET are designed to alter perception of one's health and thus questionnaire answering behaviour. I don't remember who expressed it first. Graham did an excellent job expressing it in simpler terms though, and showing...

Is there cognitive behaviour therapy for the belief that unexplained equals imaginary?

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...