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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, sensory and communication moderate, cognitive mild Crash: very severe on all categories when at my worst Recent episodes I'll describe two: First...

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 entirely on each poster describing your own experience of PEM. My aim is that we avoid theorising about the underlying biology - keep the focus on...

What is your current severity? What triggers PEM? Can you usually identify the trigger? What kind of delay before PEM, if any? What are your normal symptoms? What are your PEM symptoms? How long does PEM last? How disabling is PEM? Do you return to baseline after PEM? Does your...

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 effort on futile attempts to get Cochrane to act ethically and scientifically.

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 negotiate the bunfight of a busy forum thread. I can't promise it will be perfect, but we are aware and doing our best.

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 26th January 2025 which was about the lack of response to our letters and complaints dating back to October 2023 and March 2024. Formal appeal to...

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 treatment, in which case they were misdiagnoses. Or whether they were referred because the GP hadn't established a diagnosis, and was referring them 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 most severely affected. That's not likely to happen immediately, but we can encourage members with experience to share what their experience is like...

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 experiences about Lightning Process - now available in English

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 that, 2024, Vink

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 access to others as listed. It doesn't say the team has to be run by therapists, as is currently the case in many NHS clinics.

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 member with ME/CFS) and thinking the best approach was to get civil servants to run a consultation and come up with a plan. That was always going to end...

I don't think we're disagreeing. Physician led includes access to specialist nurses, dieticians, and other services as individually needed. What I don't think we need is a team run by therapists.

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, which in my area is worse than useless. My impression has been that local people were so pleased to have a clinic and a nice OT telling them to fill in...

We're currently preparing an appeal against this decision and the lack of information in the letter telling us the outcome.