I think it is dangerous to talk about recovery. Forums have lots of people who thought they were recovered, adopted an active lifestyle then...
One of the things that chilled me this week was when Diane O'Leary said that there seems to be a taboo about discussing ME even among the ethics...
My friend had cerebral palsy which never held her back despite looking very disabled, yet interstitial cystitis floored her. Now they have...
Barbara Oakley in her book "Cold-Blooded Kindness" discusses the way that psychopaths use pity and being a victim as a way of manipulating people....
I think this "conversion" is from the BPS view that there is an original viral infection but then deconditioning sets in. When we then develop a...
Or we could lose the therapist altogether and form self help groups... Oh wait a minute that just makes people worse. I demand research into the...
Way back before I had the internet (and CFS was barely a gleam in its father's eye) I would get sent reports about the ME world. I was horrified...
Or it is another case where it is a basic right for everyone except ME.
Sorry, Diane, I was being sarcastic about the way they dismiss experts and world class universities. The calibre of people supporting us now is...
This has been disproved but it remains as a myth probably because it gives cancer patients (and their families) a sense of control over outcomes....
So... in the UK we have Eminence based science claiming CBY and GET are safe and effective while those opposing that view were dismissed as just...
"Clinically, one infectious yet gradual onset sequence we have observed is a stuttering pattern whereby a subject experiences a severe infection,...
The IOM had a group of experts examine a large body of research but that is beside the point. We know ME is a multisystem disease because patients...
The IOM said it is a multi system disease. I do not know what evidence base they used, but we patients know it is a multi system disease because...
Actually, I have been denied access to medical care with serious detrimental results. When I first became ill, I was not diagnosed properly...
These people are like drug dealers, they peddle their products with no regard to the devastation they cause. If they were genuinely interested in...
Since the HRA was looking at ethics and how things affected patients the important question is whether patients would have entered the trial if...
In the trial, the GET arm were assured that the treatment was completely safe and that there would be no underlying harm done even if they felt...
Stephen Straus was misogynistic and disdainful of patients. He was brought in as the CDC expert at Tahoe as his speciality was EBV and this was...
The underlying problem here is that bacteria and viruses can cause symptoms that are being confused with psychiatric conditions. It is...
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