BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

Would anyone kindly refer me to this evidence that concluded the noninferiority of the Oxford criteria? Because all I find are studies stating the contrary.

https://journals.sagepub.com/doi/10.1177/1359105317695803
https://www.ncbi.nlm.nih.gov/pmc/ar...ford criteria.,or absence of other complaints

Is it not enough that the inclusion of PEM is necessary to best describe how patients are actually experiencing the condition? Is it just about PEM being unique, or is it about operationalizing a construct that picks up the least amount of false positives possible?
I just don't understand.

 

You must be referring to this study?
https://pubmed.ncbi.nlm.nih.gov/25640602/
So what he did was to take a group of 120 adolescents diagnosed with ME via Oxford criteria, found that a substantial amount of those did not fulfill CCC, figured that the two groups do not differ with respect to a bunch of biomarkers that have never been validated in ME, as well as prognosis at 30 weeks, and this is supposed to be unequivocal proof that the CCC are not sensitive enough?

 

A propos definition -- this is from another thread:

And again from another thread:

The article Esther12 referred to is co-authored by Alan Carson, Jon Stone and Chris Burton.

Forum thread on CODES, also co-authored by Carson:
https://www.s4me.info/threads/cogni...ontrolled-trial-2020-goldstein-chalder.15251/

David Tuller on CODES: https://www.s4me.info/threads/trial...cbt-for-medically-unexplained-symptoms.15535/

And Carson is again co-applicant with Trudie Chalder in POSITIF, a randomised multicentre feasibility trial of a brief cognitive-behavioural intervention plus information versus information alone for the treatment of post-stroke fatigue.

Edited to add: Carson was trained by Professor Michael Sharpe .

https://www.ed.ac.uk/profile/dr-alan-carson

 

Back to Busse, Guyatt and Cochrane Insurance Medicine:

https://insuremed.cochrane.org/about-us


Some papers co-authored by Busse and Guyatt:

Busse J, W, Montori V, M, Krasnik C, Patelis-Siotis I, Guyatt G, H: Psychological Intervention for Premenstrual Syndrome: A Meta-Analysis of Randomized Controlled Trials, Psychotherapy and Psychosomatics 2009, Vol. 78, No. 1 - https://www.karger.com/Article/Abstract/162296

Busse J, Ebrahim S, Riva J, et al
0179 Independent Medical Evaluations - Important, neglected, in need of reform: a systematic review
Occupational and Environmental Medicine 2014;71:A83.,
https://oem.bmj.com/content/71/Suppl_1/A83.2

Ebrahim S, Malachowski C, Din MKE, et al
0161 Development of an instrument assessing recovery expectations in patients receiving disability benefits secondary to mental health disorders, Occupational and Environmental Medicine 2014;71:A81.
https://oem.bmj.com/content/71/Suppl_1/A81.1

 

Symptom exaggeration is common among patients presenting for IMEs, and particularly among those patients with external incentive. IME assessors reviewing the same case demonstrate little agreement regarding the degree of impairment that should be assigned. Standards for IME assessment and reporting are urgently needed to ensure greater reliability and validity of this common form of assessment.( quoted from above post)
have these people no understanding of fluctuating symptoms whatsoever . also the wording in assessments tends to ask about how your symptoms affect you for more than 50% of the time . of course this whole thing is about money protecting the financial interest of those with power .

 

From Guyatt's CV:

He is a co-founder and Chief Scientific Officer of the Making GRADE the Irresistible Choice (MAGIC) Evidence Ecosystem Foundation which is responsible for BMJ Rapid Recommendations.

MAGIC / MAGICapp:

https://magicevidence.org/about/


And again Cochrane -- announcement from 2016:

Cochrane and MAGIC are delighted to announce the launch of an official partnership, aimed at supporting and further strengthening the use of health evidence within the context of a digital and trustworthy evidence ecosystem for health care.

https://www.cochrane.org/news/cochrane-and-magic-announce-partnership

 

If this implies a co-ordinated response from the Royal Colleges then that sounds like we're heading for an interesting few years:

 

I've not read it, but there's this NICE evidence review on diagnosis: https://www.nice.org.uk/guidance/gid-ng10091/documents/evidence-review-4

 

So yet again it seems that some members' conspiracy theories turn out to be nearer the mark than anyone ever thought?

 

He is making that up isn't he? I am not aware of any statements from Royal Colleges. There was a statement from Turner-Stokes who leads on rehabilitation somewhere but Busse says what she says is rubbish.

 

The same Alan Carson who is one of the authors of this, Study protocol for POSITIF, ... feasibility trial of a brief cognitive-behavioural intervention ... for post-stroke fatigue, 2020, Gillespie, Chalder?

 

Correction: Guyatt was Busse's PhD supervisor:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2528262/

[*]CMCC = Canadian Memorial Chiropractic College

There seem to be some remarkable details and connections, but does anyone else find it also remarkable that Busse is a chiropractor?

Wikipedia:

https://en.wikipedia.org/wiki/Chiropractic

 

I think we have to get used to thinking it is the opposite of remarkable.

 

We now live in a world of very free speech and Twitter provides almost ultimate freedom.
So why are there no complaints from patients about the draft guidelines if they are disastrously against patients' interests?
Answers in pencil on a piece of folded foolscap to reach me before judgement day.

 

Never used a chiropractor but they have a reputation - not a validated part of medicine - very lucrative ---- seems like there's a theme here ---- on (his) upside I guess he's well paid even if those on the other side of the equation (us) don't benefit from his services!

 

Yes the evidence isn't overwhelming (because there isn't much data that compared case definitions) but it does suggest that oxford results in much higher prevalences and thus risk overdiagnosing patients with ME/CFS.

Made a Twitter thread about it in response to Alan Car.

https://twitter.com/user/status/1366695739942912010

 

@Michiel Tack's rapid response has been published: https://www.bmj.com/content/371/bmj.m4774/rr-9