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Members are free to continue discussions on any thread if they wish. Nobody has said the thread should be inactive. No need to invite private chats.

Which sounds frighteningly awful. GET on steroids.

I have reduced the images.

Do you have a direct link to public information about funding of the MEA Tyson PROMs project in this phase of getting it implemented on the ELAROS apps and in the NHS clinics? All we've seen so far is the £90,000 from MEA funds to develop the materials. Since that's been going for some time...

Thank you and well done, @MittEremltage. And thanks to BHC for removing the reference.

I can't keep up with all these posts. I just want to make one point. Natalie, you keep referring to PEM as a symptom. I think that's wrong. I think it's an episodic phenomenon of a change in the severity and sometimes number of symptoms.

Some researchers have suggested overtraining syndrome in athletes causes PEM. I'm not saying PEM can't possibly occur in other conditions, but I'm not aware of it being listed as a feature of other syndromes. I'm not questioning your childhood experience. but I'm not sure what relevance this has...

If TTT or 2day CPET were a requirement for disability benefits, that would be a serious problem. Some won't get positive results on either, and some are too sick to do them, and the science isn't solid. But if the tests are used as an additional piece of evidence for some pwME, added to FUNCAP...

I think if that is intended to include Long Covid ME/CFS is could be a reasonable estimate, but I agree it shouldn't rely on a single research finding.

So are they talking about 'effort preference'?

I agree. I noticed that too. I haven't seen any evidence of psychological factors affecting prognosis. Adverse social factors I can see having an effect, for example poor housing, financial deprivation, family and work pressures, all affecting the ability to manage activity and get sufficient rest.

https://meassociation.org.uk/wp-content/uploads/2025/07/PROGNOSIS-PERMANENCY-AND-QUALITY-OF-LIFE-IN-ME_CFS-JULY-2025.pdf PROGNOSIS, PERMANENCY AND QUALITY OF LIFE IN ME/CFS What to expect following a diagnosis of ME/CFS in terms of disability, improvement, recovery, and quality of life Free...

All sorts of symptoms 'could be' generic symptoms of lots of conditions, but that doesn't mean PEM is. As far as I am aware no other condition besides ME/CFS has the particular pattern of exertion induced delayed crashes way out of proportion to the exertion and lasting days, weeks or longer...

One potential problem with twin studies for ME/CFS is that the healthy twin may be just as genetically predisposed to ME/CFS as the other one, just hasn't yet had the right trigger, and may never do. I guess that's the case for all genetic ME/CFS studies. All we can say is that the healthy ones...

If you want to discuss the details of any research paper, it's best to start a thread on that research paper in the relevant subforum.

As I understand it the usual terminology is twins, which can be further detailed by adding fraternal or identical if they are the same sex. If they are opposite sex they are obviously fraternal.

Indeed. We get people coming to the forum with such theories every few months. The process is always the same. Start with an idea, then look for evidence to support it, and join the dots with lots of assumptions. I am reminded of scientists whose strategy for testing a hypothesis is the...

Crosssposted with your previous post. I have attempted to begin to understand your theory by reading your opening post earlier today. I went back a bit later and found you had edited it again, but with no indication of which bits have changed. In the space of 2 days we already have over 100...

Hi @nataliezzz. I see you have edited the opening post to provide a large amount of text and links to research papers and to your social media threads. Just working through all that would take me several months of concentrated effort. I don't have the capacity to do that, but would like to...

I'm imagining informal chat in the staff room between therapists running different arms of the PACE trial. "How are your patients getting on?", "They don't seem to be getting any better", ... The statisticians being blinded to grouping is irrelevant. It would have been the principal...