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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.

In psychology, the patient is the agent of change could be interpreted in a different way too. One that has to do with protesting abysmal quality.

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.

That is not the best choice of words but the rest of the leaflet is good.

Can you say more about that kind of PEM?

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...

Is there any realistic chance that we get our own special report on Cochrane?

Cochrane cares about their image and brand. Showing how biased, incompetent and anti-patient welfare the reviewers and management is will hurt their image and brand.

How do you think should this be addressed? Can we make an infographic that explains how lack of blinding leads to nonsensical conclusions? We can show results from that one asthma study and the open label Rituximab study. What the Cochrane review does (as far as I remember) is that it treats...

They could save face by moving ME/CFS into some other category where the scientific standards are higher. So the elephant in the room doesn't have to be acknowledged.

I think there is a boom and bust pattern but it doesn't involve anything that could be considered a boom in activity, and may involve only occasional transitions from an above average activity level (for that patient) to below average activity levels (for that patient). So it's something that...

Re. McMegan: It's all based on PACE and other papers by the same authors who insist that their theory is supported by evidence when it is not. One could say they have a problem with fixed and false beliefs. The negative feedback by patients is presumably why they are considered especially...

Labelling patients as "dependent clinger, entitled demander, manipulative help-rejecter, self destructive denier" reveals an attitude that does not favor good patient-doctor relatonships or empathy. The psychosomatic belief system seems to perpetuate itself in part by presenting itself as the...

There are many studies showing abnormalities. Some of these abnormalities seem to be real. Are these not a hint that there is a pathology and that patients aren't imagining things? Ironically, patients are probably keen to cite these studies because they are trying to counter the idea of false...

Interesting article on glucose, insulin and energy production in ME/CFS. I see parallels to my own case. I need to eat often or I get weak, and eating something sugary can often compensate for exhaustion or weakness...