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The other thing to keep in mind is that this is just one of, I think, five questionnaires this expensive project has created, the others intending to assess PEM and/or symptoms after exertion; functional capacity; usefulness of the clinic, and I've forgotten what else. It's a massive set of...

I have done the survey. It's quite simple to do and short, with plenty of opportunity to add your comments about what is and is not useful and ideas for improvement of tracking apps. I based it on my limited and sporadic use of the free version of the Visible app.

Maybe this would be particularly useful for patients in circumstances where they are particularly vulnerable to infections, rather than something for everyone, particularly if it's short lived and has side effects.

Hugs from me too @ladycatlover. :hug::hug::hug:

I don't understand the point of all this elaborate analysis and the creation of a scoring system. Surely the overall score will depend too much on the choice of which symptoms to list, for example if they were to list 6 separate sleep symptoms and only one OI symptom, then those with mildly...

I have no idea why the MEA included him in the research team. I agree it seems very odd and inappropriate.

Russell Fleming has been part of the research team from the start, presumably based on his employment by the MEA who funded the project. Since he's not a clinician, his place is presumably as a pwME.

Looks like this is a graduate student project, presumably for an MSc or PhD. The sample were patients form the POTS clinic who were already taking prescribed meds for their POTS, and the did 20 minute semi structured interviews. Given that they were already taking the meds, they presumably...

Future Healthcare Journal Chris Barker, Mersey Care NHS Foundation Trust, Community Pain Service,

Ugh.

No mention of PEM. Emphasis on psychological symptoms that aren't listed in any diagnositic criteria. Null points from me. Edit to add: The authors are in China, where we see a lot of studies coming from that assume ME/CFS is chronic fatigue. Published in the Journal of Psychiatric Research...

I am surprised he's so positive about the letter, given that a lot of what you criticise is very similar to the Leeds Long Covid service he runs, and the stuff in their Long Covid rehabilitation booklet - Information for patients. I hope the 3 of you can get involved in the HERITAGE study he's...

I got as far as the heading and gave up, Can anyone enlighten me on what the difference is between a "basic emotion" and some other sort of emotion?

Huge thanks to the authors. I hope the letter has the impact needed. Can you share the list of recipients of the letter?

I haven't followed the details of any specific cases, this comment is about the general situation people with very severe ME/CFS face in the UK, particularly those unable to eat. I have just been looking at the NICE guidelines section on severe and very severe ME/CFS...

Thank you, @dave30th for that thoughtful and informative review. The book sounds even worse than I thought it was. She steps way outside her knowledge area into causes of medical conditions and suitable aproaches to treatment. Surely a medical anthropologist has no business stepping into these...

Added risks for pwME of not being well enough to prepare healthy food, loss of appetite due to nausea, too tired to chew, too poor to pay for healthy food. So many reasons.

I think we need to be realistic. A talk to a local group, whether political party or somehting else, cannot work miracles. I think if I were doing such a talk I would focus on: 1. Educating the audience about the severity of ME/CFS with a few stark stats such as the estimates of numbers in the...

I find myself imagining them all falling off their super yachts or blowing up on their trips to their moon colony. Eternal life cut short.

I think you are right that while there are social scientists writing poor quality and misleading material about ME/CFS, we need other social scientists to challenge them, showing them from within their field that they are getting things wrong and doing harm.