I think cognitive testing should be used in trials, especially as this came out as the "worst/most limiting factor" in the S4ME survey. Not sure...
I believe there is HOPE, because of advances in medical research and the demise of PACE. The "there is recovery for anyone who wants to believe...
@Lucibee Please don't leave, I really appreciate your insight and your "digging out the detail" from PACE trial minutes etc.
Like your thinking there Graham
NICE do look at the economics of their proposals. Extract from draft scope: "3.4 Economic aspects 21 We will take economic aspects into account...
Their medical advisors are retired GP Dr Gregor Purdie and Prof Julia Newton. Prof Newton does a great deal of biomed research into ME in the UK...
My favoured acronym is still YUMS: Yet to be Understood Medical Symptoms. So many "psychomatic" illnesses have become biological as...
I am currently very lucky to be on holiday. Therefore I don't have access to all my notes etc. I just want to make two points: My understanding...
Below* is extract from an email reply that I got from the PIP (Public Involvement Team) at NICE, prior to the Scoping meeting. I also asked Kate...
?The NICE people are based in London at the RCP.
Lynda Ware, from Cochrane is doing a talk: Mon 25 June "Making informed decisions about health care 3-4pm, Room S, Portcullis House, Cochrane...
Gabrielle Murphy who is the consultant Physician running the Royal Free service was also on our table....I think we definitely drew the short...
I agree. I think that examples of current noticeboards, patient info and questionnaires would be brilliant. I think we need to gather them before...
I have attached the above as it includes suggestions of extra ways for lay members to provide input. I believe that people who are interested in...
@Andy @Adrian @Nathalie Wright Hi guys, hopefully someone can upload full set of slides not scribbled on!
It is also interesting that the Vice Chair, Baroness Ilora Findlay works in palliative medicine.
Will they be featured in the results? She did say at one of her talks that children don't like them because it makes them different. Cannot recall...
She is a paediatric physio. She also said that they had just finished the Magenta trial and the results looked good!!
The chair appears to be a "neutral" paediatrician, whose usual work is very physiologically based mainly in intensive care of neoneates with...
I have mixed feelings about the meeting. There was a physio from the Bath clinic who couldn't believe the terrible experiences that youngsters...
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