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That link doesn't take me to the article you quoted.

https://millionsmissing.meaction.net/mm24/?mc_cid=3954d434a7&mc_eid=83ddbd3a71 WE ARE THRILLED TO ANNOUNCE OUR VISION FOR #MILLIONSMISSING 2024! This year, we are launching a national campaign to educate hospital systems and medical schools about ME/CFS by encouraging medical schools to Teach...

Thanks for posting. The thing about the writer's experiences that struck me most, apart from feeling sympathy with her suffering, is the amount of time and energy and money she has invested in visiting multiple doctors, trying a very long list of unproven treatments and diets etc, and all to no...

Like you I was particularly struck by the difference in pain intensity reported by the two groups which makes Wessely and his chums characterisation of people with ME/CFS's reports of pain as hysteria particularly judgemental and wrong. Another thing that struck me was the literature review...

Thanks for finding this. I had a quick skim read through the thesis and am impressed by the quality of the study and interesting findings. As he points out in the concluding discussion, the differences found may be a consequence of the controls not being well matched with the CFS group, since...

Dr Ruhoy has cropped up in quite a few forum discussions mostly about linking structural probems in the neck with ME/CFS. She is a neurologist and works with Dr Kaufman I think. I'm surprised the NIH are giving her a platform in their ME/CFS series.

The questionnaire for tired people. If they are recommending this seriously as a diagnostic questionnaire for ME/CFS, they have surely lost the plot. I have never much liked the DSQ in all its forms. They seem not to understand what PEM is and conflate it with PEF or fatiguability.

Naomi is an important witness to the harm caused to so many with severe ME. She speaks for many who are voiceless and suffering. I wish more would hear her. Thank you Naomi.

If you mean in the title, I've fixed it.

What rehabilitation?

You may be right. That abstract is a lot of words that say nothing useful. I would expect an abstract of this sort of chapter to summarise key points about the patients' and their parents' experiences including what support and management strategies they find helpful.

Amazing what rubbish gets produced in the name of science and statistical analysis. The conclusion that the CFQ is valid, reliable, and a suitable tool for measuring general fatigue is, we know, wrong. It's not 'measuring' anything, it's counting responses to random statements of variable...

I have tried a few times over the years watching Gervais. I confess I find what I have seen of his material completely unfunny and sometimes cruel. Maybe I've been unlucky with the bits I've watched.

I think we need to be very careful not to misquote what he said. I've just listened. He says she had previously been a marathon runner before she got sick. When she got sick she did their CPET testing. Then she spent six months doing aerobic training, needing to cut out a lot of other activities...

I think we already have evidence of why GET is a bad idea from the 2 day CPET tests and the average time it took participants to recover to pre CPET level which on this trial was 12 days. For example: Recovery from Exercise in Persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome...

I hope you find the doctor kind and helpful, @LisaG. We don't allow members to give each other medical advice, so we shouldn't try to interpret your experiences with the collar, but I think it is something to tell the doctor about if they being helpful.

I think more than 2 successive CPET's on successive days would be far too risky. Reading patients stories of how they collapsed suddenly from one day to the next into years long severe ME after a relatively short time of doing GET, which is less intensive than CPET, I think it would be unethical...

It may be waiting in a slow peer review and publication process.

Yes, I had spotted that. I'll copy the link to David Tuler's article to the harms thread. Edit: I see you have already done so, thanks.

My interpretation of the results is that before treatment the correlation is fairly strong between subective and objective outcomes but by the time the patient has been through the therapy/rehab program they have been persuaded that it should be making more difference to their health and...