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An alternative theory about Danny Blanchflower: I remember a discussion on The Bad Science forum where one of the guys who was defending the recovery criteria for the PACE Trial mentioned he had damaged his ankle and was told not to expect full function after an operation so recovery didn't...

The report from the so-called Gibson Inquiry, by a group of parliamentarians, as I recall has some useful info on issues relating to MRC funding. It wasn’t perfect but I think looking for perfection wasn’t necessarily the optimum strategy to use. For example, it said it affected children from...

A problem is that the largest or second largest ME patient organisation, Action for ME, wrote a letter in support of the PACE Trial grant application and also were on an ongoing committee associated with the trial.

Does anyone know which survey this is?

https://www.sid.ir/en/journal/ViewPaper.aspx?ID=611210 Journal: MEDICAL JOURNAL OF MASHHAD UNIVERSITY OF MEDICAL SCIENCES DECEMBER 2017-JANUARY 2018 , Volume 60 , Number 5 #G00431; Page(s) 709 To 713. Paper: VIRAL INFECTION AND CHRONIC FATIGUE SYNDROME (CFS) Author(s): DERAKHSHAN...

Firstly, to make clear to other people, I simply quoted your post. Talking about @ might suggest that I wrote @WillowJ in the post separately, which is not what I did. It was nothing personal. As I said, your post reminded me of something: One person was arguing lifestyle illnesses should get...

I started a new thread:

One idea that comes to mind is: it would be great if there was a published paper documenting the biased way the Science Media Centre has covered ME/CFS matters. Though I'm not offering to write it myself.

This was mentioned in another thread, but I thought it was worth having its own thread.

One point that Valerie raises that I think is worth considering is the point about complaints: I have a general feeling that just because one can complain doesn't mean one should complain. People may stop listening to you if you complain too much, like the boy who cried wolf once too often...

Yes, but because there was no research paper, they have little status and the findings have been largely ignored.

Healthwatch produced a report on ME/CFS a few years ago. There was even talk they would write one or more papers but I remember a patient who had pushed Healthwatch to do the report then being very angry that the research could end up in one or more published papers; I never really understood...

OK but wasn’t there some central decision a number of years ago that ME/CFS patients around the country could have CBT and exercise therapy with a physiotherapist funded? This was despite the audit of the CFS centers not finding good results. So there was a central policy as I recall and it was...

What Wessely saying is load of rubbish. He was one of the co-authors of Deale et al.

As a general point, I think what has happened in Belgium shows how hard it can be to remove rehabilitative approaches for ME/CFS from a (public) health system when they become embedded in the system. The 2006 audit showed poor results but all that happened was a tweak. Seeing what has happened...

Note that the recovery criteria are not part of the Larun et al Cochrane GET review.

The normal range analysis, which ended up being part of the revised recovery criteria, was described as post hoc in the 2011 Lancet paper.

This paper argues that there is a sort of hierarchy of subjectiveness of questionnaires with fatigue questionnaires being more subjective than physical functioning questionnaires which tend to mention specific activities.

Regarding mergers of charities, etc.: I remember when Action fo ME had a big workforce with a turnover of around £1 million in the early 2000s (a lot more in today’s terms) but closed its research fund saying it was going to concentrate instead on lobbying for research. This was before Invest in...

I should remember but don’t: can anyone tell what the true story was [re: cut off balls] or direct me to the info. Thanks.