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This reminds me of something: some people look down their noses at calls to fund-raise or donate and think lobbying for research is morally superior to calls to fund-raise or donate. However, the usual effect of successful lobbying for research is that other conditions will get less.

These 2 studies were published: https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3. This https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/

I’ve also seen charities run by non-patients for other conditions make quite a lot of dubious decisions e.g. MS Society in the UK giving money to Moss-Morris and Chalder; Irish chronic pain society seeming to largely buy into BPS model; Arthritis Society in Ireland arrange talks on Fibromyalgia...

A problem with one or two “super charities” is that they will often then tend to be run by professionals rather than people with ME as they are so big. Having ME charities run by CEOs has caused problems in the past e.g. Chris Clark (AfME CEO) (lots of problems including writing a formal letter...

I found it in this file here: https://forums.phoenixrising.me/index.php?threads/earlier-version-of-pace-treatment-manuals-trial-identifier-etc.15109/

If somebody could store and post some or all of the questions that would be great.

Many of the CBT promoters in the Netherlands say their form of CBT involves encouraging patients to see themselves as no longer having CFS so I find the claim that “no one pretends/claims that CBT will cure the CFS patients” very questionable.

I don't recognise this characterisation that in the ME community in the UK there have been very few women who have been prominent or in leadership positions in the past or currently. (Apart from names already mentioned) In recent times, some names that come to mind: Invest in ME chairman...

I recall that she previously has complained that the contributions of males with regard to the criticism of the PACE Trial have got a disproportional profile when one looks at the gender breakdown in the community. I decided to look at the gender breakdown of people who had authored or...

I could find no numbers mentioning this, but I did find the following: A reader could easily miss that

Thanks to Lou Corsius. I think he (and a fellow writer?) makes a lot of good points. However, I disagree a little with some of the points in the first blog: --- --- Treatments don't have to bring about such large improvements that scores are at normal for them to have some value. A treatment...

Sad for those this is true for (I might think a lot may catch up eventually).

These points seem reasonable to me:

Before I read the results, I thought the measure used might not be the best to assess what they called "academic performance". Someone with the condition might have general academic skills built up over a number of years but still faced difficulty learning and remembering information and so...