afme

[ETA: The published version can be found here, Research priorities for ...(ME/CFS): the results of a James Lind alliance priority setting exercise, 2022, Tyson et al] This being announced/launched today at the CMRC conference, see UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and...

CFS/ME National Services Survey Feb 2018 Snap shot audit BACME National Services Workstream Report Published March 2019 https://www.bacme.info/sites/bacme.info/files/BACME CFS ME National services survey March19.pdf

Copied from this thread I haven't looked at the update myself yet https://www.actionforme.org.uk/resources/our-publications/booklets/ https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-ME-Jan-2020.pdf

https://www.theguardian.com/society/2020/jan/20/uk-benevolent-funds-hand-out-216m-as-hardship-grows

https://www.actionforme.org.uk/news/%E2%80%8Bgp-home-visits-under-threat/

this website https://web.archive.org/web/20190914091905/http://www.afme.org.uk/ we discussed it at the other place and some people thought it might have been a student project or similar. They are not a registered charity as far as I can find out. There is no information as to who they are...

https://senmagazine.co.uk/home/articles/senarticles-2/me-and-you

Following discussion on this thread I have now sent the following personal letter to Sonya Chowdhury, Chief Executive of the UK charity Action for ME about their current web page of advice about Graded exercise therapy. I will post any response I get on this thread.

write up on AfME website: https://www.actionforme.org.uk/news/bella-magazine-please-believe-me/ includes link to scan of article: https://www.actionforme.org.uk/uploads/images/2019/09/bella-please-believe-me.pdf still saying CBT is perfectly acceptable hmm Clare Ogden AfME double hmm

Contibutions from Dr Sarah Jarvis, Charles Shepherd (MEA), Sonia Chowdhury(AfME), Leonard Jason. although they do say it's not just 'tiredness' they do seem to focus on it! at least they didn't ask Michael Sharpe for his opinion.. full article here...

Tuesday, 15 October 2019, 10:00 AM - 4:30 PM same venue as last year Bishops Square, London, E1 6AD, United Kingdom So highlights are results of their Big Survey, and Dr Nina Muirhead https://actionforme2019conference.eventzilla.net/web/event?eventid=2138742076 (link to discussion of last...

On AfME website The article is largely about more help for carers which is important but highlights other problems ie being put in WRAG for ESA resulted in worsening condition; (see AfMEs work leaflet...

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'...

https://www.surveymonkey.co.uk/r/afmebigsurvey Just to highlight this bit So Action for ME, a charity that are meant to represent pwME, have created a survey with so many questions that they put a warning on it that it might be too much for pwME to complete. Something seems wrong with that...

The following posts have been moved from the Reuters thread. Anybody else think that our UK charities have been rather lacklustre during the last week? A rare example I understand not wanting to fuel Sharpe's efforts by linking to his article more than necessary BUT of course it did blow up...

Split from this thread Why do I worry that AfME seem to have a "business model" that, to me at least, seems to put their own self-promotion and eminence ahead of the real science that is needed to help pwME.

Starts around 2.11.00 John Darvall. Interview with ME sufferer (ME for 20 years) Liz, who participated in pre PACE Frenchay trial in 2002. Mentions PACE trial and GET being discredited, #MillionsMissing campaign. Also talks to her husband re NICE guidelines and debate in HofC. good stuff...

If anyone would like to add the following to the ME-pedia AfME pages: potted history: http://web.archive.org/web/20130917032932/http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-informed/history-of-action-for-me.pdf merger with Westcare in 2002...

This thread on pacing has been split from this thread: Consumer contested evidence: why the ME/CFS exercise dispute matters so much. Plos blog post by Hilda Bastian It is good, especially for someone from outside the usual ME advocacy circles. This definition of pacing bothered me though. I...

How many protocols does this harmful GET trial need exactly? There's 5 on the website now. Is Action for ME supporting this street merging with AYME? They have a clear statement against GET now. Selected GPs are now sending out letters on behalf Crawley et al for any kids aged 11+. For 16 or...