I was thinking about this today. Unblinded clinical trials with self-reported outcomes would probably not be accepted as evidence by Cochrane if the treatment in question was a fringe treatment like homeopathy, reiki, etc. It would probably be considered embarassing to even take any of such...
The people involved in this at Cochrane seem to have difficulty understanding that modest self-reported positive effects is exactly what you would expect if the treatment did not work but was tested without adequately controlling for bias while introducing positive expectations.
They might even...
The CBT/GET narrative is apparently designed to anticipate and deflect reports of harm.
Presumably its designers created it with the firm conviction that in ME/CFS there is nothing wrong in the body, and that therefore exercise cannot harm.
They offer all sorts of explanations and...
That was unlikely to be 15000 patients but included friends and family members. It's also much easier to sign a petition than to give a saliva or blood sample.
The vicious circle of psychosomatic medicine:
An illness is poorly understood -> psychosomatic medicine zealots seize the opportunity, declare it a psychogenic illness and make up some stigmatizing narrative to discredit sufferers and control them -> entrenched business interests and public...
It seems that back in the day, ideas weren't tested to see if they are correct, they were simply asserted to be correct. Sharpe and colleagues continue this tradition.
https://www.physiology.org/doi/abs/10.1152/ajpheart.00680.2018?journalCode=ajpheart
This isn't ME/CFS research but it's not unrelated either, so I thought this should be in the ME/CFS research section.
This might be similar to people being more irritable and cranky when they are really exhausted.
Which I think happens because in an exhausted state there is an inability to resist stress, so people tend to react to minor things. That seems similar to the "inability to filter out" idea by @inox.
Once the hope turns out to be false hope, and the patient understands that providing false hope to patients like them is the only real plan pursued by the healthcare system, hopelessness and despair sets in.
Maybe they think like this:
Medically unexplained symptoms are a somatoform disorder but we don't say that openly.
Hope, motivation and positive expectations treat the sick mind.
A bogus treatment is an acceptable way to deliver hope, motivation and positive expectations (placebo effect).
It...
He is right in that patients with invisible illnesses are treated as second or third class citizens.
The irony is that he himself is such a big part of the problem: if you insist that unblinded studies are good enough evidence and switch outcomes, then you're effectively saying that ME/CFS...
It is variable. It seems to depend on exertion, temperature, hydration, salt intake. In my experience eating food I'm intolerant to also triggers increased heart rate.
If they genuinely believed that a placebo is good for patients, they should not be giving CBT and GET but some fake biomedical treatment because that will produce stronger placebo responses.
As usual their position is incoherent. Their real goals are keeping CFS in the mental health domain as...
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