Hoopoe
Senior Member (Voting Rights)
Detailed criticism has been published elsewhere already but it still be useful to write an overview of this complex topic situation from our perspective.
The main points are I think:
White repeatedly claims the treatment is beneficial but this claim is not supported by reliable evidence. If anything the evidence shows a lack of effect or an effect so small as to be irrelevant. The studies the CBT/GET proponents reference are designed so that it becomes difficult to distinguish a placebo treatment from one that truly works. The authors have never adequately responded to this criticism.
White also claims the treatment is safe, and his studies report little or no harm, yet patient surveys consistently show shockingly high rates of harm. The claim that this harm can be explained by improperly delivered GET is just a belief that lacks supporting data.
The withdrawal of CBT/GET is a based on an unfavorable benefit versus risk profile that also considers quality of evidence, not on "ideology".
To understand the discussion around CBT/GET and their safety, one needs to understand that according to modern definitions, ME/CFS is an illness that is aggravated, sometimes severely, by mental or physical activity. This type of exertion intolerance is called postexertional malaise. CBT/GET are based on a misunderstanding of postexertional malaise as unjustified fear rather than an accurate description of reality. CBT/GET are also based on the discredited idea that symptoms in ME/CFS arise from a lack of activity (deconditioning).
The apparent effectiveness of CBT/GET and the resulting discrepancy between the patient perspective and the CBT/GET literature can be entirely explained as an artifact of flawed and biased research methods. There is a major problem with quality of research in this area.
Edit:
The new NICE guideline was supported by a petition with over 20000 signatures, showing that patients welcomed the withdrawal of CBT/GET. I'm not aware of any significant patient support of CBT/GET. That White wants to reintroduce these treatments despite patients having clearly rejected them is disrespectful. Rather than asking "Why deny patients with chronic fatigue syndrome treatments that can help?" we should ask "If CBT/GET work, why has no clinical trial in the last 30 years demonstrated that these treatments are more than an elaborate placebo? As mentioned, CBT/GET are based on a serious misunderstanding and false theories, and so it would be surprising if they really worked.
The main points are I think:
White repeatedly claims the treatment is beneficial but this claim is not supported by reliable evidence. If anything the evidence shows a lack of effect or an effect so small as to be irrelevant. The studies the CBT/GET proponents reference are designed so that it becomes difficult to distinguish a placebo treatment from one that truly works. The authors have never adequately responded to this criticism.
White also claims the treatment is safe, and his studies report little or no harm, yet patient surveys consistently show shockingly high rates of harm. The claim that this harm can be explained by improperly delivered GET is just a belief that lacks supporting data.
The withdrawal of CBT/GET is a based on an unfavorable benefit versus risk profile that also considers quality of evidence, not on "ideology".
To understand the discussion around CBT/GET and their safety, one needs to understand that according to modern definitions, ME/CFS is an illness that is aggravated, sometimes severely, by mental or physical activity. This type of exertion intolerance is called postexertional malaise. CBT/GET are based on a misunderstanding of postexertional malaise as unjustified fear rather than an accurate description of reality. CBT/GET are also based on the discredited idea that symptoms in ME/CFS arise from a lack of activity (deconditioning).
The apparent effectiveness of CBT/GET and the resulting discrepancy between the patient perspective and the CBT/GET literature can be entirely explained as an artifact of flawed and biased research methods. There is a major problem with quality of research in this area.
Edit:
The new NICE guideline was supported by a petition with over 20000 signatures, showing that patients welcomed the withdrawal of CBT/GET. I'm not aware of any significant patient support of CBT/GET. That White wants to reintroduce these treatments despite patients having clearly rejected them is disrespectful. Rather than asking "Why deny patients with chronic fatigue syndrome treatments that can help?" we should ask "If CBT/GET work, why has no clinical trial in the last 30 years demonstrated that these treatments are more than an elaborate placebo? As mentioned, CBT/GET are based on a serious misunderstanding and false theories, and so it would be surprising if they really worked.
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