Search results

Agreed. The key problem is that all 'advice' re 'treatment' is termed as 'rehabilitation', ie getting back to 'normal functioning', whereas it should be classified as 'management'. True pacing is about managing the illness as best as possible, not as a means to achieve 'recovery'. But that...

I am surprised that no one has looked into why some pwME sleep a lot and others have problems being able to sleep. Or whether this is associated with the stage of the illness (ie sleeping more earlier on). Although both are 'unrefreshing', I don't think, until this has been properly assessed...

In Aug 2018 the MRC said they hoped to make the PACE trial data available on the CSDR within 6-12 months see post here https://www.s4me.info/threads/foi-request-re-pace-cost-effectiveness-analysis.7482/#post-133461 so not long to go before the 12 months is up. Wonder if they will have similar...

The origins of factitious disorder Richard A. A. Kanaan & Simon C. Wessely https://philpapers.org/rec/KANTOO https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00228-X/fulltext

Simon Wessely will be interviewing Ken Loach (who made the film 'I Daniel Blake'); I wonder if Ken Loach is aware of SWs role in the adoption, or should that be adaption, of BPS 'theory' that has lead to the atrocious treatment of sick and disabled people in the UK?

article in german https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html includes video of #MillionsMissing in Munich google translate https://translate.google.com/translate?hl=en&sl=de&u=https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html&prev=search

Carol Monaghan at 26.00 ish and again around 41.00

Local Man Testifies To Senate Panel About ME/CFS May 10, 2019 full article here https://www.whmi.com/news/article/local-man-testifies-to-senate-panel-about-me-cfs

full blog here http://www.broadagenda.com.au/home/millionsmissing-gender-bias-adds-to-the-burden-of-disease/

eta: this was yesterday #MillionsMissing was at number 11. see this post https://www.s4me.info/threads/may-2019-awareness-week.8142/page-2#post-167184 to see time for your time zone to blitz social media

Pretty awful article imo. Includes quotes from SC AfME, and the MEA making the psych vs physical point. Also links to MERUK and the CDC. Very muddled mish mash. Not the best kind of 'awareness raising'...

I did wonder if they maybe had taken an Eric Morecambe approach; all the right [data], not necessarily in the right order :geek:

https://www.bbc.co.uk/news/uk-wales-48229907

re the discussion about sleep (but not directly related to v.severe); in a lot of the NHS literature, and info from the BPS proponents, they often say that X,Y,Z are 'normal' responses to exercise/activity, and that it will help you sleep. It would be useful, if only to prove this presumption...

might it not be worth someone contacting the 25%group for input on this? https://25megroup.org/ https://25megroup.org/contact-us

hmm

it's been fixed. no harm done :D

take the 'watch' bit away and there's not much difference.

part 2 eta: spaces removed