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There are several members here, including me, whose health problems started in adolescence. I hope you succeed in giving a voice to young patients...
There are existing hospitals that specialize in rare diseases and who also do research. We as community could ask that these clinics (if they...
Difficulty thinking. Thinking requires more effort, is slower, is interrupted frequently by losing attention. Sometimes formulating clear thoughts...
What's the view here on the value of study that searches for PEM in other syndromes and illnesses? It would clarify how common PEM is in other...
It might just be a convenient way to divide the patient sample into those with more and those with fewer symptoms. But yes, don't we have enough...
I think what may be happening is that I can't tolerate for long the stimulation of the nervous system that is required to allow me to function....
Aren't all symptoms by definition modifiable by attention? Symptoms are by definition self-reported. Self-reporting of symptoms is well known to...
I know what you mean but have some doubts that this has much to do with adrenaline. To me it feels like the body is in a sort of "energy saving...
I've read that some metabolic disorders respond well to treatment if you can find out what the exact problem is. For example, I carry a mutation...
Why I've started to doubt PEM is only found in ME/CFS: I've now heard of several cases where a person with mitochondrial or metabolic disease had...
I'm not sure if I should continue to try and find some other disease that could explain my symptoms. If I have ME/CFS then it doesn't make much...
I only count myself as being in PEM when there is noticable worsening of one day from the next, and on the previous days I did more than usual. Or...
I'm no longer convinced that PEM can be safely assumed to be unique to ME/CFS, or that clinicians can distinguish PEM from tiredness after...
Does anyone wonder whether these testimonials are made up? They don't sound authentic to me because they contain almost no details. A real...
Her website is a typical LP practitioner site with slick marketing https://www.dr-anna.co.uk
I would like to see a cerebral blood flow study during a relapse compared to a non-relapse state.
The released PACE dataset showed that dropout were much more likely in a group of entries at the beginning. The intepretation of this depends on...
I often wonder what could be found with in-depth lab testing during my prolonged crashes. They make me feel very unwell and can last weeks or...
The reason PACE failed to show an improvement with exercise therapy is probably precisely because they recruited a large enough number of ME/CFS...
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