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Yes, but what does this mean exactly? The authors presumably want to express that the treatment works in the real world too. However the clinical trial has not actually shown that the treatment works because it failed to control for nonspecific effects, and the real world data is even less...

I don't mind if it said that patients are biased, if there is also a recognition that doctors and the medical system and research and politics are also biased. Assuming that only patients are biased is, ironically, the very problem that is being pointed at.

My mother developed it after a biphasic infection which she appeared to have caught from her friend who was very unwell and in bed. I was also infected but recovered normally. In the following years I began to have PEM episodes. I'm not sure that the infection is of great importance. My mother...

This is a well written and informative paper. I have many of the listed risk factors for suicide. What is preventing suicide is the support of my family. Once they're gone, I'll be in a bad situation.Hopefully by then I'll have managed to build a a secure and stable foundation for a life with...

I've had the impression for a while that the covert purpose of some psychological and psychiatric treatments is not to help the patient but to lessen the emotional burden placed by the sick person on society. In simpler words, it's about getting the patients to stop expressing their suffering...

What are the odds that she came up with this idea all by herself? I think they are low. Someone told her these things and she believes them.

Andy is doing a great job promoting this, and I hope also showing to researchers that collaboration with patients is possible. A model for future work in the UK and elsewhere too I hope.

I don't know. I don't have access to my genetic data :(.

Also what is wrong with these people for considering a key question whether diagnosing ME/CFS causes harm?

Under limitations they do not even acknowledge the problem with CBT and GET trials consistently failing to control for reporting bias.

My understanding is this: C > T describes a substituation at the DNA level (cytosine replaced by thymine). R248W describes a substitution of the amino acid at position 248, normally R (arginine) with W (tryptophan). Y359STOP means there is a premature stop signal at position 359 so the...

What does minimum alternate allele frequency (expressed as fraction) mean? Does a value of 0.418 mean that 418 out of 1000 people have the mutation? Or that in 1000 people, there are 418 mutations (some of them homozygous?)

I wonder if a pathway like sestrin is malfunctioning in ME/CFS.

Interesting reasoning. Consultation-liason psychiatry doesn't seem to work. Since we cannot definitely exclude that it might work, we need a new generation of clinical trials testing a wider range of consultation-liason psychiatriy service models. Normally one would consider the apparent...

We should research the claim that repeated medical investigation is the cause of somatization or somehow causes illness by suggesting to patients that they are ill.

"not being able to" is not the problem, at least for me. It's the symptom exacerbation that occurs and it isn't improved with training. If we could increase activities this easily we wouldn't need any treatment because we could return to a normal life just by doing more. ;) Somehow Chalder has...

I know what study you mean. I cannot remember the details but remember thinking (I hope I'm not remembering wrong) the study came to this conclusion because it measured a limited of common symptoms. It didn't allow patients to openly describe all their symptoms. It seems almost inevitable to...

And why is this a problem? It's perfectly possible that for example hEDS is often just ME/CFS that was diagnosed differently because the patient happened to see a doctor that believed more in hEDS than ME/CFS. We should be trying to find out if this could be the case or not. The diagnoses...

What would be the danger?

I think we can assume that people are going to be biased towards reporting the symptoms consistent with the diagnostic labels they were given. However they also get the chance to report symptoms that are rarely mentioned in connection to the respective diagnostic labels and here we could be...