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It's such a vicious cycle of abuse and marginalisation. Illness gets no funding --->> LOL your illness has no identifiable physical cause ---->> illness gets even less funding and becomes even more of a career suicide for researchers to enter the field and so on.

The ME community in the UK should be campaigning for 'services' to be abolished, not new ones added. Given that there are zero evidence-based treatments for ME/CFS, the only 'treatment' you're going to get is CBT/GET and you expose yourself to the risk of coming on the radar of psych services...

If you don't have family support and can barely subsist, they say it's attention seeking. If you have a supportive husband, they say it's secondary gains (symptoms mean you can save face while shirking work and domestic chores). If the spouse is unsupportive, the symptoms are due to a bad...

The claim that 80% or 90% have abnormal neck MRI is an astonishing one. You'd expect such a finding to have appeared in the peer-reviewed literature by now. As far as I know, our patient population has been having structural MRI scans since the 1980s and no consistent abnormalities have been found.

It was a challenge to recognise it within myself, let alone for anyone else around me to notice it or take it seriously. I would have described it as feeling somewhat 'under', or as if coming down with something for a few days after exertion, usually lasting three days, before returning to...

I read a review about fatigue in lupus a few years ago and the treatment recommendation was antidepressant drugs based on the fact that there is no correlation between fatigue and 'objective' disease markers like inflammation. Lol.

Sounds plausible. As discussed years ago on the other forum, the RAS is involved in wakefulness/arousal, sleep, attention. If I recall correctly, a previous study found a correlation between brainstem neuroimaging alterations and pulse pressure, which would link in with problems with autonomic...

I don't think their funding and publication chances would be negatively affected. Psychiatric disorders, including anxiety disorders, receive vastly more NIH funding than ME/CFS and are considered legitimate career paths for clinicians and researchers unlike the ME/CFS field which is considered...

This line is also used by some proponents of bogus medical treatments for ME/CFS. "Sure, there are no trials showing that this drug works, or in fact trials have shown that it doesn't work, but I have seen it work anecdotally and therefore I in my infinite wisdom and clinical judgement know that...

Great essay. Re: plausible mechanism, my impression is that the BPS crowd does not believe in the deconditioning hypothesis and they only use it in manuals for political reasons because they think it's less controversial and less likely to trigger the patient than stating their actual view...

The last thing that's needed is further "high quality, adequately powered RCTs" of water. It's highly irresponsible of Cochrane to even suggest wasting money and human resources on this. This organisation has gone down the shitter completely.

Awesome! As an aside, I also experienced some benefits from it in the past, though far milder than what you are describing, but could not continue taking it due to side effects. But just because a drug helps some people, it doesn't make it effective in general as a treatment for a condition...

Naltrexone is one of the few things that we can be 100% sure doesn't work for ME/CFS given how many clinicians prescribe it to our patient population in the States and how many of us have tried it on our own without any major benefit. It's so widely available and cheap compared to something like...

Never heard of this diagnostic entity. New ones springing up all the time. :rolleyes:

"Doctors are the same as lawyers; the only difference is that lawyers merely rob you, whereas doctors rob you and kill you too." - Chekov

Incredibly difficult read. What a monstrous Kafkaesque situation.

I'd love to know what happened to the other 10 who didn't make it to their 16th birthday. Probably died scared and confused because someone gave them a diagnosis of 'functional neurological disorder' when symptoms first came on.

Articles making these sorts of false and exaggerated claims are very unhelpful IMO. Nothing is known about the underlying biology of ME/CFS today, nothing whatsoever. The literature is a nuclear wasteland of one-off unreplicated results. If you had gone into a coma 35 years ago and woken up...

Has this study been approved by the research ethics committee at Stanford?

A lot of bad information in this article. It gives the impression that the ME/CFS diagnostic situation is cut and dry (appeal to authority: IOM report) and that Epstein Barr titres have something to do with the symptoms. It also presents naltrexone as a legitimate treatment despite there being...