Barry
Senior Member (Voting Rights)
An interesting point.why the BMJ is a stakeholder. Why a journal?
An interesting point.why the BMJ is a stakeholder. Why a journal?
Probably irrelevant, but I wonder why the BMJ is a stakeholder.
Reply to clarify, having only just noticed this discussion.The letter says it is lodged on behalf of the eight stakeholders listed. 'Dr HNG Group Submission, with and on behalf of Doctors with M.E.' is the ninth entry on that list.
There are many referencing ‘errors’ in the Evidence Reviews that accompany NICE’s Draft Guideline for ME/CFS that was published November 2020 and one quite significant problem causing multiple errors is that the referencing in Evidence Review G is all out of kilter. NB Evidence Review G is key because it looks at the evidence relating to the non-pharmacological management of ME/CFS. It contains 2 review questions, with the first considering the clinical and cost effectiveness of various non-pharmacological interventions and the second determining the experiences of patients who have received those interventions. Included in those interventions are cognitive behavioural therapy (CBT) and graded exercise therapy (GET).
It looks as though NICE drew up a reference list of included studies for evidence review G that was 138 (or more) papers long, but then at some point culled some of the included studies leading to the final reference list for G being much shorter than the original one, at just 110 papers long. So the question is – would such a cull be at odds with the process by which NICE is supposed to review papers and studies – https://www.nice.org.uk/process/pmg6/chapter/reviewing-the-evidence – if it occurred later on in the process after the original inclusion/exclusion decisions had been made and/or after the review of included papers had commenced or been completed?
Not sure which thread would be best to post this, but have included it here as it is in effect a comment on the draft guidelines. Goodelf has written a piece published on the Opposing MEGA blog, pointing out anomalies in the recorded selection of papers for the evidence review:
The Mystery of the Shrunken Inclusion List.
(Fact or fiction?)
See https://opposingmega.wordpress.com/...UfC0YZLVYkp9M4LheW79ojc07P8Nw6O2Ykyn-DoJOX6n8
My brain is not up to following the article this evening, but here is an extract
So the question is – would such a cull be at odds with the process by which NICE is supposed to review papers and studies – https://www.nice.org.uk/process/pmg6/chapter/reviewing-the-evidence
I wouldn't worry.Yep - it appears that we didn't totally lose, how much that appearance relates to reality is currently unknown to me.
For people that 'won' we still don't know what we've 'won' - which is an 'unusual' state of affairs in my experience.
It 'seems' that the secret guidelines were okayed (not that we are allowed to know what they are), and now there is 'additional clarification where necessary'.
Additional clarification to a secret document.
Are they deliberately trying to drive people nuts?
For people that 'won' we still don't know what we've 'won'
now all they have to do (once the guideline is published) is to do a shed load of PR to let everyone know they got it wrong for so long to try and undo some of the harm.I think I am clear what was won.
1. Respect
2. An official recognition that the evidence base for treatments involving increasing exercise is too poor to use as a base for treatment (other than in that it looks pretty clearly negative)
That is enough for one step.
Oh... what a truly wonderful thought, the relief that would be makes me tear up just thinking about it.Just having the same degree of 'understanding' and 'acceptance' as MS sufferers would be nice.