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It is very time consuming to get decent data about the UK funding: with the MRC in the past, when I have asked for or searched for trials/studies on CFS, or on ME, I have had to check each one in detail to see whether it actually is on ME, and, of course, you have to check all the variations...

I'm afraid all my funding analyses are way out of date. But I'm pretty sure that my comment about the total spent on biomedical research into ME over the last 40 years is still around one week's current funding into HIV/AIDS. It might now be safer to say two weeks' funding. That's a calculation...

I'm afraid that my brain cells are slowing down, and I have a couple of areas that I am looking at at the moment. I'll happily look at it when there's a space and my brain is active, but that may be a while yet. Sorry!

Personally, I think we have pretty much nailed the PACE coffin: any further analysis would just be repeating what a bad trial it was: unless, of course, there is some useful and proper analysis of solid data possible along routes that they did not consider (e.g. length of illness vs performance...

Possibly not. I have been pushing for some detailed data from Bristol for one of the Crawley studies, and they have produced an agreement to sign about not making the data public. I haven't read it yet, so can't be sure, but it looks as though they are recognizing patient researchers.

The truth is that, as far as we discovered in our FoI study on the clinics, virtually none of them have any reliable way of checking their effectiveness. A very few actually state that they don't claim to be able to treat the ME, but can help manage it: from memory, they were the ones with...

I think it is vital to keep everything to a minimum, in order to make it as easy as possible for the patient to respond. This is my thinking, so far, pinching all your thoughts of course! Before, after, and follow-up assessments: a few days before the first session, a week or so after the first...

Yes, but I managed their improvement with just a few exhortations: does this make me a super-pro? As far as normalizing scores are concerned, I'd have problems doing that with such a strange distribution: there's far too much clumping at the top end for relatively healthy folk, so the variety...

I carried out a survey among people I knew, friends of friends, and other contacts who had ME and asked them to fill in the Chalder Fatigue Questionnaire, also using Goudsmit's mild/moderate/severe category. Here's a graph of the results. It takes a bit of thinking, but there are three different...

Actually, I tried an experiment on my local ME support group a while back, while explaining the problems with PACE. I asked them to fill out the sf-36 form by themselves with no discussion, and if they had time they could fill out the Chalder Fatigue Scale as well. Then I told them how to score...

Good point Trish. As I said, the aim was to straighten out my thinking, and you are all certainly doing that. Sincere thanks! Thinking back to my early days, pacing and avoiding boom and bust did produce a definite improvement on what I could comfortably sustain. Perhaps more emphasis on what...

True enough, but suppose their aim was to give patients an appropriate diagnosis, teach them about pacing and boom and bust, offer help with pain medication, possibly look at sleep problems, perhaps look at useful massage techniques, discuss the possible problems with diet (and the bigger...

Thanks everyone for helping me think more clearly about this matter. I've got a lot more thinking to do yet. Some quick thoughts. The "evaluation" is an overall evaluation of the clinic's approach, not of the individual patient. Prior to using any assessment, it would be tested over a period...

Coming from education, as Head of Maths, I was answerable to parents, the head and to the governors. That wasn't a superficial chat either: for all of my time in education, it has been easier to get grades at English in comparison with maths. When I started, only 20% of the country were allowed...

The sf-36 asks questions along the lines of whether a patient has no difficulty, some difficulty or a lot of difficulty with, say, climbing several flights of stairs. Grading an answer like that is so difficult, and open to manipulation. I was thinking of a simple list of facts - did you dress...

I'm not interested so much as how the clinics make us feel, but many of us have forgotten the long time we spent waiting for a diagnosis, wondering or worrying about what it could be. One friend had a dad who died of Motor Neurone Disease, another worked in a ward of patients with dementia: you...

I'm just floating ideas here, and would appreciate some feedback. I have been thinking about the difficulties that ME centres have in measuring effectiveness. It doesn't seem appropriate to put patients through a set of demanding objective assessments, and yet responses to subjective...

But there are certain skills you learn in flower arranging that can help. For example, to deal with wilting flowers you stand them up to their neck in a bucket of water overnight in the garage. So if you are wilting, clearly that is a technique worth trying. (There are other forms of wilting...

I wonder whether this will turn out to be relevant: https://www.quantamagazine.org/nobel-prize-awarded-for-cells-adaptations-to-oxygen-20191007/

I think Jon's submission to the Scottish government hits the nail on the head, but there also needs to be a more approachable version for folk who are not technically minded. I know that most people here would regard this submission as being both simple and clear, but, believe me, there are many...