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As far as I recall, Rons aim was to develop the technology to, in the long term, save the NIH money (using it to test drugs on particular illnesses); they (the NIH) said that this was not a priority. It was on one of the early conference videos.

from a recent article in the Guardian re 'recovery' in mental health, links to this article Recovery Model of Mental Illness https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4418239/ this appears to be the version of 'recovery' that is being applied to ME/CFS

From Recovery in the Bin full article here https://www.theguardian.com/commentisfree/2019/may/14/mental-health-services-crisis-patients-vulnerable-off-rolled?CMP=Share_iOSApp_Other

you could use #MM to illustrate the false narrative of 'a small vocal group' being opposed to the highjacking of the disease by psychiatry and subsequent dodgy research (eg PACE). A South African news team (Carte Blanche) did a good sum up of the situation a couple of years ago although please...

Systemic low-grade inflammation and subsequent depressive symptoms: Is there a mediating role of physical activity? https://www.researchgate.net/publication/333056434_Systemic_low-grade_inflammation_and_subsequent_depressive_symptoms_Is_there_a_mediating_role_of_physical_activity

NS Sherlock

on AfME twitter feed. I don't know anything else.

I hate to say it but, I think we might be stuck with Mild, Moderate and Severe (for now) because of the SNOMED codes (only applies to UK). see Dx Revision watches post here...

pussy galore? (aka honor blackman)

Another thing that I think confuses issues is using the word 'recovery' when actually what is meant is 'in recovery' or in other words in remission as opposed to recovered, as in, no longer symptomatic. The use of the word 'recovery' for psychotherapies (see stuff on IAPT) seems to be quite...

well, if the researchers don't know then why not ask the patients/participants? On one of the dozens of questionnaires that they have to fill in, surely it wouldn't be hard to include somewhere.........'Would you say that you have recovered'? and why try and 'invent' ways of measuring things...

one of my favourite pics where is everybody? surfing? or in the pub having a pastie?

One of the things I dislike (there are many) about that scale is the use of Moderate to Mild as the last category, even though they have a separate Moderate section. As I have argued before https://www.s4me.info/threads/why-are-the-majority-of-pwme-rarely-mentioned.7732/...

@Adam pwme has recently done a couple of good short videos; (these two threads also discuss advocacy videos in general) https://www.s4me.info/threads/stop-ignoring-me-video.9325/ https://www.s4me.info/threads/response-to-michael-sharpe’s-claims-of-harassment.8850/ eta: might be worth taking a...

Something has been bugging me about the whole issue of the PACE trial and how the findings were/are reported. Yes we know they changed criteria etc etc and the reanalysis of the data and this data is important but for the average person with no understanding of the ins and outs of research...

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?