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in the library with the lead pipe ?

AfME head of Childrens services MJW, formerly head of AYME who were the patient body affliliated with Crawleys research. (and BACME) . Interviewed on TV and on radio giving her support for Crawleys research (eg 1 Nov 2016 BBC Victoria Derbyshire program openly opposing Jane Colby of Tymes Trust...

I'm sorry you find it tiresome. I'm sure AfME and their former allies found @dave30th and others persistant criticism of PACE very tiresome, and you have to admit that it has taken AfME a long time to come around to accepting that supporting the trial and all that it stood for was a bad idea...

Merged thread Member for Rushen (Mr Speaker) to ask the Minister for Health and Social Care – If he will provide an update regarding the provision of a Chronic Fatigue Syndrome and Myalgic Encephalomyelitis service on the Island? Isle of Man TV channel - produced by Paul Moulton for PMC-TV...

didn't want to highlight this article so am posting it here. Not a recommendation. ME sufferer vows to do 19 challenges in Northern Ireland friend's memory - BelfastTelegraph.co.uk...

I have been trying to get a better understanding of the development of the WHO ICD codes in relation to ME and CFS and although I haven't read it all am finding the document linked to on the Hummingbird site helpful. There is a long and short version. the contents of the long version are...

yes. But what's the point if they ignore the results; ie the survey they did before the PACE trial showing that (can't remember the actual figure) 50% (?) of people reported GET making them worse. Yet they still thought it was a good idea to put more pwME through it for the PACE trial. Then...

does that include Esther Crawley and Hazel O'Dowd ?

no idea what was on this video as I can't view it (am still unable to find the full Victoria Derbyshire program from 1 Nov 2016 [only found a short clip on FB] if anyone has a copy, knows of one please let me know) eta: screen shot MJW on left "A therapy that successfully treats two-thirds...

this appears to be a bit of a contradiction(?) ie AfME spokesperson 'problem is healthcare professionals who do not specialise in ME/CFS', but the quote says the GET was with a physio who specialised in ME

I didn't know where to post this as it came from the Independent Malta: article outlines their Budget for 2020 https://www.independent.com.mt/articles/2019-10-14/local-news/Budget-2020-Social-measures-COLA-3-49-increase-to-be-supplemented-by-15-or-35-one-time-bonus-6736214773 probably a...

https://www.preprints.org/

SMC all over, it's what they do

" Morning session 10.30am to 12.30pm Voices from our Big Survey, presented by the Action for M.E. staff team Presented by our Policy Officer, we will launch key findings from our Big Survey on living with M.E./CFS in the UK. Panel discussion, chaired by Jane Stacey, Trustee, Action for M.E...

One thing that they avoid talking about is what they think of Crawleys research in particular the SMILE trial and LP; a trial that was facilitated by their now head of childrens services, MJW.

https://www.actionforme.org.uk/uploads/pdfs/cmrc-2017-programme-updated-180817.pdf including Esther Crawley

don't know if this has been posted https://www.eventbrite.co.nz/e/what-do-we-know-about-chronic-fatigue-syndrome-an-update-on-research-tickets-76132286719