The UK ME/CFS biobank does home visits to collect samples.
If anyone wants to discuss and ask questions about PEM, you can do so on this thread: PEM discussion thread
I'm not surprised. They have superficially gone along with the NICE guideline. Note that they say we "find overexertion to be detrimental" in this...
I agree with the recommendation to switch to NICE, though NICE is far from perfect, still including CBT and exercise in modified forms and sleep...
That's a pretty damning assessment of the RACGP ME/CFS guideline which is called a HANDI guide, and simply recommends GET, with PACE and Cochrane...
I have some odd ways of coping. I guess we all eventually find our own ways. I've had a lot more years to learn to keep my emotions on a more even...
My experience: Severity I've done FUNCAP it as I am today, not crashed, and how I was in a recent crash: Today: Physical and orthostatic severe,...
What is your current severity? What triggers PEM? Can you usually identify the trigger? What kind of delay before PEM, if any? What are...
Do you get delayed PEM that makes your ME/CFS more severe for a day or more, up to and including permanently? I have started this thread to focus...
Ugh that sounds horrible, Mij. Are you getting any treatment (I don't know whether there is any).
My effort preference is to go on a lovely walk in the countryside, followed by dinner and dancing with friends. Since I can't do that, I waste my...
I'm working on it. The next factsheet consultation will include a way for people with very severe ME/CFS to input their feedback without having to...
I have now submitted an appeal to Cochrane to the decision we received on 14th February 2024. The decision refers to our complaint submitted on...
It's not clear from your summaries whether the people referred already had an ME/CFS diagnosis from their GP, and were being referred for...
This is a valuable discussion. I think it would be good to have a factsheet on very severe ME/CFS, written with the help of members who are the...
My understanding is that what you describe is included in the category of very severe ME/CFS. I am very sorry that you are suffering so severely.
Yes.
For dozens of people's accounts of what LP is really like, see this thread: LP-fortellinger - Norwegian website sharing information and...
They do indeed pre select, and only take on people willing to believe what they are told. The article is advertising, not a scientific report.
Oops, silly me. Trying to do too many things at once and getting in a muddle, sorry.
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