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yes, so much this. I still do it every day, every week, every month. I wake up feeling totally crap, gradually work my way through morning routines like getting and eating breakfast, all the while thinking about what I will try to achieve today. Can I read and comment on that document, can I...

People say all sorts of things. That doens't make them true. The ICC criteria require all sorts of things beyond the generally agreed core symptoms of chronic disabling fatigue and PEM, with some other common sympoms such as pain, OI and cognitive dysfunction. A problem with assuming some...

I have no idea what this means. If you are talking about LLMs, they don't 'understand' anything. And they often make stuff up.

If goal setting included goals like learning to ignore ignorant rehab advice and trust my understanding of my body's limitations, resting more, getting more help, and other such realistic goals, it might be fine. But goal setting seems to be a rehabilitation term aimed at getting people to do...

The quantify bit of this project is the bit that probably concerns me most. The intention is clearly to find ways to demonstrate value for BACME clinics by generating numbers that they can push in their required direction. But the numbers are meaningless when the questions don't and can't...

That set of 10 questions you quote is just the old SF-36 Physical function questionnaire that's been used in ME/CFS trials and clinics for decades. I think they included it in this batch of questions so they can compare people's responses with their responses on their own new questionnaires...

I'll try to work on it today.

I agree. It's also complete nonsense, as I tried to point out to Sarah on the original version of the questionnaire. What's mildly demanding for me today may be impossibly strenous for me next week, or vice versa. Do I say anything that's bad enough to trigger PEM is by definition too strenuous...

I haven't read the article. This bit stuck out to me from the quotes above. One wonders whether she had burnout or ME/CFS. They do get mistaken for each other.

If anyone wants to explore further the whole project output so far, the MEA has worked with the app company ELAROS to produce an MEA app which consists of links to assorted MEA booklets, and the Tyson PROMs which you can fill in on the app and it keeps a record of your answers for your own use...

As with the previous questionnaires in this project, I had all sorts of difficulties filling this in, as many of the questions, my answer would be 'how long is a piece of string'. I just took a guess at what they might be intending to find out. The only ones that seemed sensible to me were the...

Section 3b. The ME Disability Scale (MEDS) 21. Please choose which level best describes how ME/CFS affects you ‘at the moment’ NOTE: Activities can be physical, cognitive, social, emotional etc. Level 1: Adapting activity.You can do the things that are important to you, but may need to adapt...

Section 3: The ME Association's Clinical Assessment Toolkit Scales 3a. Post Activity Symptoms Scale (PASS) The following questions are about the worsening of symptoms people with ME/CFS get when they exceed their baseline, or ‘energy envelope’. Other terms you may come across are post...

SECTION 1: ABOUT YOU 1. Have you been diagnosed with Myalgic encephalomyelitis (ME, also known as Chronic Fatigue Syndrome (CFS)? Yes No 2. Have you been diagnosed with Long-Covid OR was your ME/CFS triggered by a Covid infection? Yes No 3. Where do you live? England Wales...

A few excerpts from the patient information sheet: Who will conduct the research? The project is led by Prof Sarah Tyson from the School of Health Sciences, University ofManchester, who has ME herself. Dr Peter Gladwell (North Bristol NHS Foundation Trustand BACME), Dr Keith Geraghty...

Copy of the first page of the survey: THE ME Association’s Clinical Assessment Toolkit (MEA-CAT) Measuring post exertional malaise, disability and work status We are asking adults in the UK, who have been diagnosed with myalgic encephalomyelitis (ME), which also known as chronic fatigue...

I am trying to catch up with this discussion. I have not been able to read the whole paper yet, but from what I have read, it seems to me that Hutan is raising relevant points. This post is a work in progress. I have just reached this bit in the paper and it seems relevant If direct...

It looks from the abstract that they assume PPS implies psychosocial problems. Sigh.

@MelbME, looking at this from a different perspective, is there any indication in the combination of test results the algorithm/AI identifies as very likely to indicate ME/CFS that does actually give useful clues to pathology? A bit like the genetic slight differences that point in useful...

I had a go at reading it. I'm not much the wiser. It seems to be a long and convoluted way of saying that it's not central sensitisation or FND or catastrophising which are all versions of the brain wrongly interpreting normal sensations as abnormal. Instead it is a more complicated version...