Impact of COVID-19 & 2021 NICE Guidelines on Public Perspectives Toward ME/CFS: Twitter Analysis, 2025, Khakban et al (Jason Busse)

Tweet listing Busse's links with the insurance industry in response to a question from @dave30th

https://twitter.com/user/status/1929700815788249513
Click to expand...


Dr. Jason Busse has established multiple connections to the insurance industry through his clinical practice, research, and advisory roles:

Consultant to Prisma Health Canada: Dr. Busse serves as a consultant for Prisma Health Canada, a private company funded by employers and insurers that consults on disability claims. (PMC)

Clinical Director at Prisma Health Canada: In addition to his consultancy, Dr. Busse holds the position of Clinical Director at Prisma Health Canada, where he oversees the management of chronic disability claimants referred by private disability insurers. (http://orthohub.xyz)

Former Director at ATF Canada: From 2001 to 2010, Dr. Busse was the Director of the Complex Claims Division at ATF Canada, a private company that provided assessment and treatment for patients receiving long-term disability benefits. (http://orthohub.xyz)

Research in Insurance Medicine: Dr. Busse's research encompasses insurance medicine, focusing on areas such as disability benefits and workers' compensation. (Insurance Journal)

Collaborator with Cochrane Insurance Medicine: He is listed as a collaborator with Cochrane Insurance Medicine, an organization dedicated to evidence-based research in insurance medicine. (http://insuremed.cochrane.org)

Research on Impairment Ratings: Dr. Busse has conducted studies comparing editions of the American Medical Association's Guides to the Evaluation of Permanent Impairment, which are utilized in workers' compensation systems. (Insurance Journal)

These roles and research endeavors highlight Dr. Busse's active engagement with the insurance industry, particularly concerning disability assessment and management.
 
I doubt that many universities have PhDs in anaesthesia. Categories tend to be much broader. It may be that his PhD was on topics that anaesthetists deal with, like pain, but that does not make it a qualification in anaesthesia. It might actually be more a matter of anaesthesiology. (But who knows what anaesthesiology really is, other than I believe that my uncle, Sir Geoffrey Organs, may have been the first professor of it and was at one time the president of the world association thereof! He was an academic anaesthetist.)

I think in the page saying Professor, Anaesthesia is just a personnel page meaning a professor in the department of anaesthesia.
 
I haven't read this paper so far but it reminds me of this paper by Peter White where they analyse what is presented in different fora and then claim views that are not their own are incorrect or something similar.

https://pmc.ncbi.nlm.nih.gov/articles/PMC3572659/
JRSM Short Rep
. 2013 Jan;4(1):4. doi: 10.1258/shorts.2012.012051. Epub 2013 Jan 14.
Views on the nature of chronic fatigue syndrome: content analysis
Zahra Hossenbaccus 1, Peter D White
Affiliations Expand
PMID: 23413406
2 comments on PubPeer (by: Tom Kindlon PMC: Tom Kindlon)
PMCID: PMC3572659 DOI: 10.1258/shorts.2012.012051

Abstract

Objectives: Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), has provoked much controversy and led to arguments between the medical profession and patient organizations. A particular focus for debate is the categorization of the condition as physical or psychological in its nature. The aim of this study was to compare how the written media, patient organizations and medical authorities regard the illness.

Design: Content analysis of newspaper articles, ME patient organization websites, and medical websites and textbooks were assessed by two independent assessors.

Setting: Three national UK newspapers, UK ME websites, and UK medical websites and textbooks, were accessed during 2010.
Participants: 146 source files were scored from 36 patients' organizations, 72 media articles and 38 medical authorities.
Main outcome measured: The overall opinion of an article or website was rated using a five point Likert scale, from 'extremely psychological' (scored as 1), 'moderately psychological' (2), 'both psychological and physical' (3), 'moderately physical' (4) or 'extremely physical' (5).

Results: Eighty-nine percent (32 of 36) of ME patient organizations considered the illness to be physical, compared with 58% (42/72) of newspaper articles, and 24% (9/38) of medical authorities. Sixty-three percent (24/38) of medical authorities regarded the illness as both physical and psychological. The inter-group differences of the Likert scores were statistically significant (χ(2) = 27.37, 2 df, P < 0.001).
Conclusion: The considerable disagreement, particularly between ME patient organizations and medical authorities, may help to explain the gulf in understanding between doctors and patients and the consequent reluctance of some patients to engage in behavioural treatments.

----
https://pubpeer.com/publications/90D04574664ABCD8228BF029D311FA

Things are not clear cut in the CFS field yet

I'm afraid I found the analysis in this paper to be somewhat superficial. In particular, it did not explore why positive statements might not predominate for GET and CBT.

Evidence-based medicine should not just be about efficacy measures but also adverse events. The reporting of harms in trials of CBT and GET for CFS has been recognised as being poor (2,3). As one systematic review pointed out: "There is limited evidence about adverse effects associated with behavioural interventions. Withdrawals from treatment in RCTs suggest that there may be an issue but the evidence is often difficult to interpret because of poor reporting."

A published survey of Norwegian ME/CFS patients found that of 620 who reported their experiences of graded exercise, 488 (78.7%) said that it had caused an overall deterioration (1). Surveys of patients in other countries have also found a high rate of adverse events associated with graded exercise regimes (2).

I am not that familiar with the Norwegian health system but in other countries central schemes to collate information on adverse events associated with interventions, such as the yellow card scheme, are not available for nonpharmacological interventions (such as CBT and GET), increasing the importance of survey data.

While some efficacy has been reported for CBT and GET, the measures used have generally been self-reported. Objective results are less impressive. For example, a review of three Dutch CBT studies found that no increase in activity levels, as measured by motion sensors, was recorded (above those in the control groups) despite improvements being reported in fatigue, as well as other subjective measures in the individual studies.

The recently published PACE Trial got a lot of positive media coverage. However, on the only measure that could be described as being an objective measure, the six-minute walking distance (6MWD), there was no difference between the CBT and control groups. The GET group did improve on the 6MWD. However, 379m is not a particularly impressive result at 12 months considering 644m is the distance reference equations would estimate for this cohort.

Anyone familiar with such evidence could justifiably be cautious in statements about CBT and GET.

A common threshold for interventions to be seen as evidence-based is at least two positive (high quality) RCTs. Most posited therapies in the field have not been subjected to two RCTs. Any comments on other therapies, including on the Lightning Process, should certainly be tempered in the meantime.

References:

[1]. Bjorkum T, Wang CE, Waterloo K. [Patients' experience with treatment of chronic fatigue syndrome.] Tidsskr Nor Laegeforen. 2009 Jun 11;129(12):1214-6

[2]. Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Bulletin of the IACFS/ME. 2011;19(2):59-111. http://www.iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/ tabid/501/Default.aspx

[3]. Chambers D, Bagnall AM, Hempel S, Forbes C. Interventions for the treatment, management and rehabilitation of patients with chronic fatigue syndrome/myalgic encephalomyelitis: an updated systematic review. J R Soc Med. 2006;99:506-20. Review.

[4]. Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychol Med. 2010 Aug;40(8):1281-7.

[5]. White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet. 2011;377:823-36.

Conflict of Interest: I am the Assistant Chairperson and Information Officer of the Irish ME/CFS Association. All my work for the Association is unpaid
 
Dolphin said:
Regarding the discussion in the comments about Dr Shepherd resigning from the NICE guidelines: is that what happened? I remember he was excluded from some discussions as it was considered he had a conflict of interest.
Click to expand...
My memory is that he was able to participate in all the discussions of the committee on the understanding that he would not have a vote and would be allowed to continue his voluntary work for the MEA. And that he was asked to leave the committee very near the end of the process as he had been expressing strong views publicly about topics relevant to the guidelines.
The other 3 who left did so after they had signed off to agree the guideline, presumably in a sort of feeble protest.
 
Dolphin said:
Conclusion: The considerable disagreement, particularly between ME patient organizations and medical authorities, may help to explain the gulf in understanding between doctors and patients and the consequent reluctance of some patients to engage in behavioural treatments.
Click to expand...
"The disagreement might explain the disagreement"

Yes, groundbreaking work again by Professor Equipoise. How could we possibly solve this complex problem without their undying genius. You can't make button soup without the button maker. :facepalm:
 
Trish said:
The other 3 who left did so after they had signed off to agree the guideline, presumably in a sort of feeble protest.
Click to expand...
Ah, so when it's oft-repeated that "4 members left" it includes Shepherd who was made to leave based on a prior agreement that this is what he'd have to do to participate?

I had missed that. So damn silly. Not that it makes much difference considering that the 3 voting members who left voted for because they had no legitimate objections. Or that it means only a small minority even had such objections.

Clearly it's too much to expect journalists and reporters to look at facts and details and so on.
 
Dolphin said:
I found this by Dr Shepherd himself: https://meassociation.org.uk/2021/08/dr-charles-shepherd-stands-down-nice/
He was stood down.
Click to expand...
In this case NICE received a complaint from someone who is carefully monitoring our social media content. This resulted in a further discussion relating to my continuing conflicts of interest and I have now been ‘stood down’ from the NICE guideline committee.
Click to expand...
And the BJM invites Garner to write for them. Talk about living in completely different realities.
 
You must log in or register to reply here.
Back
Top