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I saw the following post in a discussion on the ME Association Facebook page. Charles Shepherd wrote: "A significant part of the problem here as far as NICE is concerned occurs when a person who is being considered for appointment to the committee has strong opinions on issues being discussed...

This is from a book that costs more than 60 dollars. Does anyone happened to have a copy of some sort? Some pages can be read with google books...

I've also tried to paste the text into a googledoc as this might be easier to update the information (although I find it difficult working with footnotes in this format). I'm no good with computers, so I hope you can all watch it at this link...

I've summarised some information about the appointed NICE committee members in the attached pdf-document. I've focused on committee members with a BPS-bias, and did not delve into the lay members and ME-experts. This thread can be used to challenge or verify the information in the pdf-document...

Good point. He writes: "as a full committee member, I might also have to remove myself from discussions and decisions in areas where I obviously have a very strong opinion." I think this indicates he would have no voting rights regarding GET/CBT, because he allready published strong opinions...

I think this refers to William Weir. Shepherds dilemma was probably the reason why NICE was not sure if there were going to be 1 or 2 extra Physicians with an interest in ME/CFS

I respect Dr. Shepherds decision and understand it was a difficult dilemma, but I think I would have preferred him to become a full member of the committee. We need the votes. Edit: Stewarts insightful remarks made me change my mind (see posts below). Edit: Charles Shepherds own comments made...

There are still 3 appointments to be made.

The official guideline here in Belgium lists all sort of tests that should not be done. It includes Natural Killer cel-testing, tilt table test, B12 measurement, polysomnography, immune markers such as cytokines, antibodies to herpesvirusses etc. Here's the full section (source...

When I was reading about central sensitisation syndromes (CSS), I found the following remark: “For patients who report a wide range of comorbid symptoms within the CSS family, the clinician may choose to pursue fewer expensive diagnostic tests and, instead, gear treatment toward biopsychosocial...

I was reading the MUS-book Chris Burton edited. In Chapter 5 Medically Unexplained Symptoms and the General Practitioner, Christopher Dowrick (university of Liverpool) writes: "Although patients with MUS present with a variety of problems and cues, GPs are more likely to pay attention to their...

Yes. I agree. My comment was not intended as a call to go search for (personal) information, more like a question if anyone is familiar with (public) advocacy work of these committee members. Maybe some of them were involved in UK advocacy many years ago? I'm not questioning that they are well...

Isn't it a bit weird that we know so little about these 3 lay members? I thought NICE is supposed to pick persons who have been involved in patient organization, advocacy and policy around ME/CFS. Is there really nobody on the S4ME forum who has heard of them or something that might have...

I agree. No matter who's been selected as expert witness,I allready know what Murphy, Daniels, Burton, Bond-Kendall etc. are going to push for in the guideline and it's not going to be pretty. What we need is the last committee appointments to be much better than the previous ones.

Could you give more information about this? Are they going to announce the last committee members or expert witnesses? Can you say where this information comes from? Many thanks in advance.

A first draft of a letter to NICE regarding the conflict of interest of Murphy and Bond-Kendall has allready been written. Further discussion has been moved to this thread: https://www.s4me.info/threads/draft...-interest-in-the-guideline-appointments.6519/

Thanks for the info. Even though its mostly based on NIH-funding, it's indeed more likely to be an understatement than an exaggeration. I’m going to use that statement in advocacy, if I may…

Thanks for the videos Graham. I do have one question: in the fourth video you say: "worldwide, over the last 40 years the total amount of money spent on research into ME is of the order of one month of current spending into research on HIV/AIDS." Could you give more background on those...

I deeply respect the opinion of Jonathan Edwards and Charles Shepherd, but I do not think the ME-community should wait out the announcement of the last committee members to take action. There seems to be two arguments/concerns at play here: One is that the committee might be biased by having...

It think this is pretty good! The questionnaire is a bit long, but maybe that was the intention - to capture all possible aspects of PEM first. Later studies might look for correlations with objective measures such as 2 day CPET or differentiation from other diseases and this might give clues...