Search results

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 statement, yet in their position paper published in 2020 and updated in 2022 after the NICE guideline was published they say...

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 hygiene I think. My concern is more that if this is just one individual's blog, which it seems to be, then it will have no clout. And it's not all...

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 as references. I don't know who Jackie Stallard is, nor is there any information on the website about whether this is an individual or an...

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 keel when the world around me is going mad. Doesn't always work of course. But I agree strong emotions, happy and sad, are draining for pwME...

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.