Search results

It sounds as if we need a good study that will look at the tissues of deceased patients. This will be difficult because we don't know what virus we're even looking for and where to look for it, or if it's even a virus.

Another way to think about this is that essentially the money that was meant to help patients has been diverted into subsidies for researchers and therapists with treatments that haven't been shown to be better than a placebo. It's a form of exploitation and we must finally break free of this...

But the researchers are so eminent and free of selfishness or bias. Their work has been peer-reviewed. Are you not impressed?

With the assumption that the authors of these studies are totally trustworthy and not hiding the harms in creative ways that cannot be discovered from the published information. Getting worse from overexertion is obvious that it's really a mystery how the studies are achieving such low rates of...

Something I wanted to say: I don't think that exercise has any special role to play in treating ME/CFS. Looking beyond my n=1 experience, there doesn't seem to be any data unambiguously showing improvement with exercise. Most of the work in this area has been done by people who were looking for...

I don't mind if there are people from outside the community that opposes GET, as long as they do not have conflicts of interest. They should be easy to convince with the information that is available and their presence makes the review more credible.

It's so painful to see society wanting children's illness to be psychosocial because of its own inability to bear the thought of children actually having a chronic illness.

But that would be exactly what perpetuates the difficulty medicine has with medically unexplained symptoms. The difficulty medicine has with medically unexplained symptoms is precisely that they're convinced that the solution lies somewhere in the domain of mental and behavioural health and...

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...