In my mind, PPI exists to make sure the interests of patients and the public are adequately represented. The BPS research into ME/CFS is an...
The obstacles are Finding out about opportunities Not knowing what I will be expected to do (which is important for someone who must pace...
New research from Case Western Reserve University and University of Toronto neuroscientists finds that the brains of autistic children generate...
People should be careful when approaching lived experience with ideology, because it's easy to fall into behaviour of selfishly trying to impose...
To answer my own question: Currently we study PEM almost exclusively by collecting information from self-reported symptoms and by doing 2-day...
Publishing false, misleading, or dubious claims should be illegal and punished. The potential of research to do harm by disseminating false...
PEM could be described as an overload problem. If too much of something yet to be identified happens, then we crash and recover slowly. But what...
Why do you focus on myoglobin in particular?
They have the audacity of going to a social event.
In my experience, there clearly is a pattern of doing too much for some days/weeks, then crashing for weeks. Early in the illness I also kept...
There's a reason patients are so interested in explanations for PEM that involve basic physiological processes. Having PEM willl alter one's...
PEM is difficult to manage because if I listen to my body, it can feel very capable of doing activities and I tend to be motivated as well. Later,...
If we want to avoid unnecessary medical investigations, then we should get rid of the FND paradigm. Easier and more honest to say we don't know.
Deaths are easily rationalized away as saying that it shows functional disorders are real, serious and a tragedy. This allows them to signal just...
This view that providing medical care for functional disorders will make them worse, what is it based on? What is the diagnostic test that allows...
I think he means that professional bodies advising against supportive care in the misguided but well intentioned view that this would be best for...
Thanks this has been very useful. I find it relatively easy to analyse my situation and gain insights. The hard part is translating them into...
Yes, but I don't fully trust them either because I can't tell what they believe with regards to ME/CFS. This problem is affecting, to various...
Don't read too much into it, it just means a lot to me because I'm not used to these ordinary experiences. I also cried at home when I got my...
A few weeks ago, I met the same woman on two different occasions while I was at a bike rack. I was leaving, she was coming. She was beautiful and...
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