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Thank you @Wilhelmina Jenkins for sharing your story in this way. The more clinicians see coherently expressed and honest accounts of patients' experience the better, and yours does this very well.

Thank you so much for sharing your beautiful poems. As both patient and carer for my daughter over decades, your poems touched and moved me. I particularly like the images in the sonnet. A poem I will return to.

We have a thread from 2018 when a member tried unsuccessfully to get UpToDate to remove their recommendation of GET/CBT for ME/CFS. UpToDate ME/CFS information If you have an information about it's section on ME/CFS now, please post it on that thread.

See also: UpToDate: Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome, 2022, Jenkins

Oh lovely, more GET for LC. When will they get it that PEM is not deconditioning?

I had a quick look at the PDF. There's 14 pages of information and diagrams about all the different substances tested, all derived from other sources, before you get to the methods and results. The definition of CFS seems to be brain fog and intestinal dysbiosis, I didn't come across any...

Research on prevalence of EDS in ME/CFS is very variable both in quality and in results. Some studies that I would consider more reliable don't show any statistical association between the two. Others claim an association, but when you look closely, use a self diagnosed Beignton score and call...

I have no problem with easy read documents being produced to enable more people with ME to take part in the consultation, but surely they should have had someone who understands ME checking it to ensure it's accurate. I haven't got around to looking at the main consultation document yet. I hope...

The tiredness theme recurs. There's a section near the end on things people say that are wrong and upsetting. Yet the document itself gets it horribly wrong.

I'm not on the committee, but I expect they will decide when and how to inform Cochrane about the petition. We can't add the names from the petition to the list of signatories of the letter, as many don't make their names public. The petition was set up to enable more people to show their...

What's all this 'feeling very tired' nonsense? Apparently when we're in PEM we feel even more tired. That's appalling. Can it be fixed? Does anyone know whether there is any way of getting this 'easy read' document corrected?

Published in Nature Scientific Reports Full title: Effectiveness of physical activity interventions on reducing perceived fatigue among adults with chronic conditions: a systematic review and meta-analysis of randomised controlled trials Ioulia Barakou, Kandianos Emmanouil Sakalidis, Ulric...

2 posts have been moved to a new thread: Effectiveness of physical activity interventions on reducing perceived fatigue among adults with chronic conditions: .. review.., 2023, Barakou et al

Well I won't be mourning their losses. They do a lot of harm with their low quality reviews of psych and alt therapies.

The deadline and response form in the material from the British Psychological Society are their own ones for their members to feed into the BPS joint response. They are not the official date and form. This is the government website with the links to the official documents and response form...

I have the deadline as 4th October. I assume this is the psychological society's deadline so they can collate their members' responses.

Any idea what that means? The description seems to apply to anyone inactive after infection, whether they have long covid or not, and whether they have PEM or not.

I just went to have a look at the Remission biome tweets, and found I'm blocked! The only things I remember posting in response to their early tweets was a suggestion that they need to check if they or any doctors involved need ethics approval for their research. Put that with the above...

As I understand it, the deterioration from the bed rest was temporary and easily reversed by the exercise regime.

I'm sorry to hear you are struggling so much, VRT. It can take a long time to find a way of coping with being so sick. It doesn't mean you are not as strong or as valued as anyone else. You are right to be shocked that ignorant doctors are still telling us to exercise. It's not our fault we...