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Tweets seem to be not showing on the forum at the moment, at least for me. I'm no longer a member of twitter so can't see anything beyond the first post linked above, which says:

I'm certainly not closed minded about this, and it's nothing to do with what I would prefer the truth to be, but multitudes of pwME have been prescibed antibiotics for infections unconnected with our ME, and there have not, as far as I know been hundreds of people saying antibiotics cured their...

Their logic seems, as exercise specialists, to look for why people with Long Covid experience exercise intolerance. They are accustomed to looking to the lungs, heart and muscles for explanations, and diagnosing deconditioning. In Long Covid, they find these don't provide adequate explanation...

A post has been moved to: £622,000 grant to improve diagnosis and treatment for ME/CFS and Long Covid

Big thanks to Andy, Chris and Sonya for an excellent webinar. It's the first one I've managed to watch for quite a while from the team and as ever I'm impressed by the thoughtful, professional and patient-friendly way the whole project is being run. :trophy@

Please only post on the forum information that is in the public domain and add links to that public information. Speaking with my forum moderators hat on, we don't allow any individual patient's private information or personal medical details to be discussed here without their permission.

There has been much discussion about B cells and ME/CFS and rituximab and other drugs on this forum. Here's a link to a recent thread which I found interesting. Pilot study in Norway - Daratumumab in ME/CFS

:cold_sweat::grinning::joy::laughing::sob::weary_face::tired_face::pensive:

Hi @Pibee, thank you for sharing your experience of discussing this with the researchers and patients. Are you a clinician working with these researchers? I can't imagine how anyone would get such access to patients in a trial because of confidentiality for the participants.

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.