Search results

I decided to tick the boxes so I could see the survey, and completed it. As with the last survey, I have significant criticisms. I wrote my immediate reactions in the box at the end, but will go back over it and consider whether to make a more detailed comment. Not that they will take any...

This seems unreasonable. Why are they asking for regulatory authorities to be allowed to look at my data? What regulatory authorities?

This is the link to the survey: https://www.qualtrics.manchester.ac.uk/jfe/form/SV_4GBQxvdf3mgdW1E The survey introduction says: Developing a clinical assessment toolkit for people with ME/CFS and clinical services. Stage 3: The ME Activity Questionnaire (MEAQ) We are asking adults in the UK...

And they can't even get their information right. The TIMES questionnaire on symptoms was the first one they had people filling in. This new one is the third one and is about activity levels and adaptations.

I've read the first bit of the book that's available on Amazon, where she gets glandular fever in her final year at school. It's well written and easy to read.

Some posts about this: NIH to open long COVID clinical trials to study sleep disturbances, exercise intolerance, and post exertional malaise Have been moved to this thread: USA: The RECOVER Initiative - Long Covid research

Really good. Many thanks to Chris Ponting.

I faded out well before the end but will try to catch up with the talks I missed when they are posted later. I thought the conference was very well organised. Every speaker had a clearly stated time slot and they weren't allowed to over run, and the question time at the end of most sessions...

I had written a longer comment including stuff about pacing-up, but it failed to register and I'd forgotten to save it, so I had to start again.

Excellent, I've signed it and added a comment.

I see the authors are based in Bangaldesh, so I assume the study will be carried out there. I hope some clinicians such as Todd Davenport will help them with better information and redesign of the study, though it may be too late. It's so full of flaws it will be useless.

Well, hold the front page, sick people are found to be sick. Who knew? I wish they wouldn't use the phrase 'well being'. We are sick. It smacks of the whole 'wellness' industry, quackery, Goop etc.

Bhupesh Prusty is on now talking about his work on fibronectin. I'm too knackered to concentrate any more, so will have to catch up later.

I share your concern, @Old Monkey, it's a steep learning curve for all of us when we first come across the harmful nonsense that has been inflicted on us. I hope you can avoid the nonsensical deconditioning 'therapy' being imposed on your young caree. The NICE guidelines specifically say therapy...

The email says they will be on You Tube.

Very good talk by Sayoni Das from Precision Life. She showed some analyses of data on ME/CFS from the UK Biobank, and some Long Covid data, and they are looking forward to getting the DecodeME data to analyse.

The second day of the conference is under way. As yesterday, I missed the first part. They are now doing a series on the experience of Long Covid, and stigma.

The graphs are prevalence, not incidence. Given only about 5% recover, even if incidence of new cases is highest in teens to 40's, the cumulative prevalence will be high for much longer.

They are now having a half hour lunch break. During the break they have people with LC and ME/CFS from different countries sharing their comments and experiences. So far the conference is very professionally run, with all talks running strictly to time with a bit of time for questions after...

Just watched Rob Wust. Very impressive. He has learned more about PEM and the difference between PEM and deconditioning in ME/CFS than the BACME and BPS people have learned on 30+ years. He specifically said the role of physical therapists should only be to help pwME stay below their PEM...