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.
 
Sphyrna said:
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/articles/PMC6407870/#:~:text=Oxford 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.
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Vegard Wyller has written about this, but I can't remember if it was published in a norwegian journal in norwegian or if it was in english.
 
Midnattsol said:
Vegard Wyller has written about this, but I can't remember if it was published in a norwegian journal in norwegian or if it was in english.
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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?
 
rvallee said:
Carson is mostly talking nonsense in this thread but I think this may be a hint into the process that is taking place behind closed doors: requiring PEM is "making up a new definition" and thus the process is invalid.
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A propos definition -- this is from another thread:

Esther12 said:
All these threads made it a bit confusing where to post this, but I just saw that Alan Carson was claiming around 30% for 'what percentage of all medical visits (not just neurology appts) are due to functional disorders?'

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And again from another thread:

Esther12 said:
This recent article in the BMJ from Stone, Burton and Carson, "Recognising and explaining functional neurological disorder" (thread here: https://www.s4me.info/threads/recog...neurological-disorder-2020-stone-et-al.17413/)

Cites CODES [19] to justify the claim that RCTs support the use of CBT across the range of FND:
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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 .
He was Principal Investigator of the Scottish Neurological Symptoms Study.
He has a longstanding collaboration with Dr Jon Stone, Consultant Neurologist. [...] External collaborators include Mark Edwards, Laura Goldstein, Michael Sharpe, Markus Reuber, Jon Mellers, Richard Kanaan, Tim Nicholson and Tony David.
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https://www.ed.ac.uk/profile/dr-alan-carson
 
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Back to Busse, Guyatt and Cochrane Insurance Medicine:

Cochrane Insurance Medicine is made possible through contributions by researchers, their respective academic institutions and sponsors including EbIM Research & Education, Dept. Clinical Research of the University of Basel Hospital, Switzerland; Research Center for Insurance Medicine (KCVG) supported by the Dutch Employee Insurance Agency (UWV), the Dutch Academic Center for Insurance Medicine (DACIM), the Netherlands; McMaster University, Canada; Karolinska Institutet, Sweden.
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National and international social and private insurers, professional organizations and work related institutions support this initiative.
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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
Conclusions
Low quality evidence from randomized trials suggests that cognitive behavioural therapy may have important beneficial effects in managing symptoms associated with premenstrual syndrome.
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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
Results We included 52 studies, all of which were observational in design and most of which focussed on determining the rate of malingering among examinees. Estimates of non-credible symptom over-reporting among patients presenting for IMEs ranged from 16% to 55%, with studies at lower risk of bias finding higher estimates.
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Other studies found that inter-rater reliability among IME assessors for assigning degree of impairment to the same IME report was poor, and that patients presenting for an IME with external incentive (e.g. litigation, disability benefits) perform systematically worse across a range of psychometric tests versus patients presenting with similar illness/injury but without external incentive.
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Conclusions
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.
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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
Conclusions
Our instrument holds promise for identifying claimants holding negative recovery expectations, which may be associated with prolonged recovery. These unhelpful beliefs may be a useful target for early interventional therapies.
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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:

This materialised in the launch of MAGICapp in 2013: our advanced online authoring and publication platform for guidelines, evidence summaries and decision aids.

MAGIC was at the same time developed into an independent Norwegian non-profit organisation, in order to offer MAGICapp as a “Software as a Service” through license agreements with guideline organisations across the world.

Generous research and innovation grants, widespread international collaboration with substantial in-kind resources and income from customers has made it possible for MAGICapp to see the light of day and to be continuously be improved, based on feedback from our users.
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Within this framework – and with MAGICapp as a core platform – we continue to spearhead research and innovation together with a wonderful team of international collaborators sharing our vision. One example is the BMJ Rapid Recommendations, demonstrating successful solutions for evidence synthesis and guidelines through a collaborative network approach in wonderful partnership with BMJ.
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Our independent non-profit Norwegian MAGIC Evidence Ecosystem Foundation was set up in 2018 to provide sustainable and professional services to our customers (e.g. MAGICapp) while pursuing our evidence ecosystem vision through continued research and innovation.
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The MAGIC Foundation is registered in the national business and organization registry in Norway: MAGIC at Brønnøysundregisteret.
The Board currently consists of the MAGIC founders: Per Olav Vandvik (Chair), Linn Brandt, Gordon Guyatt and Thomas Agoritsas. Our statutes are available at request.
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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
 
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rvallee said:
Carson is mostly talking nonsense in this thread but I think this may be a hint into the process that is taking place behind closed doors: requiring PEM is "making up a new definition" and thus the process is invalid.

Without the context of the pandemic this may have worked, nobody knew or cared what PEM is outside of the ME community and our few researchers and clinicians. That has changed a whole lot since, but I assume this will be one of the plays here.

Of course requiring PEM literally invalidates the entire ME-BPS construct and every bizarre claim and assumption it makes, but then again building an evidence base on an invalid definition always carried the certainty that one day it would be washed away in a single stroke.
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If this implies a co-ordinated response from the Royal Colleges then that sounds like we're heading for an interesting few years:

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Sphyrna said:
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/articles/PMC6407870/#:~:text=Oxford 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.
Click to expand...

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
 
Sphyrna said:
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?
Click to expand...
That's the one.
 
rvallee said:
Carson is mostly talking nonsense in this thread but I think this may be a hint into the process that is taking place behind closed doors: requiring PEM is "making up a new definition" and thus the process is invalid.

Without the context of the pandemic this may have worked, nobody knew or cared what PEM is outside of the ME community and our few researchers and clinicians. That has changed a whole lot since, but I assume this will be one of the plays here.

Of course requiring PEM literally invalidates the entire ME-BPS construct and every bizarre claim and assumption it makes, but then again building an evidence base on an invalid definition always carried the certainty that one day it would be washed away in a single stroke.
Click to expand...
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?
 
MSEsperanza said:
It seems Busse and Guyatt know each other from McMaster University's "Clarity faculty":
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Correction: Guyatt was Busse's PhD supervisor:

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

The JCCA is delighted to announce that Dr. Jason Busse has joined the Editorial Board of the Journal of the Canadian Chiropractic Association.

Dr. Busse is a Research Associate at McMaster University. After completing a BSc in Microbiology and a MSc in Molecular & Medical Genetics at the University of Toronto he attended CMCC [*] and graduated in 1999. Dr. Busse has been working with individuals on long-term disability secondary to chronic pain, chronic fatigue and other medically unexplained syndromes since 1999, and just completed his PhD in Clinical Epidemiology & Biostatics at McMaster University with the support of a CIHR Training Fellowship and under the supervision of Professor Gordon Guyatt.

Dr. Busse’s research has focused on the understanding and management of complex disability, orthopaedic trauma, research methodology, and vaccination. Some of his current projects include a multi-centre trial to establish the effect of low-intensity pulsed ultrasound on fracture healing, a systematic review to establish predictors of prolonged recovery after filing for disability status, a survey of North American orthopaedic surgeons to explore attitudes towards chiropractic, and exploring the implications of designing a no-fault compensation program for vaccine-related injuries.

Dr. Busse has 7 textbook chapters and 54 journal articles in press or accepted for publication, and has published in journals such as Spine, the JCCA, the Journal of Manipulative and Physiological Therapeutics, the British Medical Journal, the Canadian Medical Association Journal, the Journal of Bone and Joint Surgery, Pediatrics, Psychotherapy & Psychosomatics, the Mayo Clinic Proceedings, and the Journal of Clinical Epidemiology.

Dr. Busse was awarded the CCRF/CIHR Chiropractic Research Chair Award in May 2008.
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[*]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:
Chiropractic is a pseudoscientific[1] complementary and alternative medicine (CAM)[2]
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https://en.wikipedia.org/wiki/Chiropractic
 
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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.
 
MSEsperanza said:
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
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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!
 
Jonathan Edwards said:
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.
Click to expand...
Oh I can think of two or three persons who would be up for doing that to ingratiate themselves further with the eminent ones.
 
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