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.
Thread here: Opinion CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of...
Quoting from the Terms used in the guideline: That says to me that it's possible within the NICE guideline to have a physician led team with...
I think it was the case of a politician temporarily in a position to do something (Sajid Javid as secretary of state for health with a family...
I don't think we're disagreeing. Physician led includes access to specialist nurses, dieticians, and other services as individually needed. What I...
I will wait with a little hope for the government to publish its plan, but I hold out little hope it will be any better than what we have now,...
We're currently preparing an appeal against this decision and the lack of information in the letter telling us the outcome.
I started from the end of the documents, don't ask me why. Came across this self aggrandisement from Sonya Marshall Gradiznik Really?
sadly because that's exactly what's happening.
Separate names with a comma.
