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from MEA website https://www.meassociation.org.uk/2019/05/me-awareness-winter-hill-film-premiere-in-me-awareness-week-03-may-2019/ on youtube

I don't fit any of those descriptions. They are far too specific and that they describe what people at each level should be able to do is not helpful. As you say, what is the evidence for this?

I note that some 'emotional/behavioural symptoms' have been included. This is taking the description of concussion in a different direction which is not what (as I understand it) neurologists would test/be looking for. see my post here from a while ago...

Lifeline 01/05/19 Interview with Yvonne Brewer Spillane Samir Oucherfi May 1, 2019 near fm podcast Liam is joined by Yvonne Brewer Spillane who talks about what it’s like to have a son who suffers with ME/CFS ( Myalgic Encephalopathy/ Chronic Fatigue Syndrome ). Duration: 23:02...

from a brief bit of googling it [concussion] is taken seriously by neurologists who will perform a number of tests for diagnosis............. (interestingly the treatment is rest). But if it doesn't resolve, it then becomes 'post-concussion syndrome'.....and it's on to the psychs...

I think again that the problem is with how the 'cognitive problems' are described/interpreted. More often than not they are confused with 'mental problems' (the benefits questionnaire for ESA for example has cognitive problems in the 'mental' section and tend to be largely directed at feelings...

echos of "We prefer our description of recovery"

The survey done in 2014 https://www.actionforme.org.uk/uploads/pdfs/me-time-to-deliver-survey-report.pdf based on the results of that survey that worked well. maybe sort out existing problems first?

hmm, and who consistently backed up the claims of 'effective treatments' and helped promote them(?)

physio-pedia pretty awful entry under chronic fatigue syndrome. the good news is it says that it is currently under review. https://www.physio-pedia.com/Chronic_Fatigue_Syndrome

He and the others keep changing their tune to try and save face. There are many instances where SW has more than inferred that ME doesn't exist, and one of the prime reasons for 'changing the name' to CFS was to 'reclassify' it as a mental illness. I am reminded of Nigel Speights comments in...

It's funny that KK also made a 'thing' of David not being a medical doctor....... so what medical qualifications or for that matter, journalistic qualifications does she hold? (I can only find that she has a BA in Russian and German [on Linkedin]).

maybe you should try finding some 7th Day adventists? https://theplaidzebra.com/why-seventh-day-adventists-live-longer-than-any-other-group-in-america/

[for cross-referencing purposes] see also this thread https://www.s4me.info/threads/government-and-insurance-companies-establishing-the-bps-model.2319/

yes, I was just thinking the same about the interferon alpha research (only involvement of ME/CFS patients was as controls, not sure if they were matched up there either). From what I read somewhere(it might have been on one of his videos, interview with Ben(?)), I think Ron Davis was putting...

It also sites the Cochrane review as a 'seal of approval' for PACE; a lot hinges on Cochrane so whatever they decide in May is crucial. Would be good to have a 'joined up' response ready from all advocates for whichever way it goes. [ ie @dave30th @Brian Hughes @Carolyn Wilshire @Tom Kindlon...

"at least 11 studies have cited this letter, which appeared to have nothing to do with any of them." a literal 'carte blanche' for Crawley.

I wouldn't mind if a certain UK charity did the same.:speechless:

The Impossible Dream Opera singer and neuroimmune disease sufferer Jacqueline Ko fights for disability visibility with The Impossible Dream, a benefit show for the ME/FM Society of BC Saturday, May 18th [I like that they refer to ME and then say - 'sometimes referred to as CFS'...... it's...