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

[bobbler]

The cartoon at the bottom of the second link seems to indicate the sort of bad taste one might expect from this sort of outfit.

There seems to be a significant Swiss input. I have nothing against the Swiss but this smells of money to me.

Indeed, tasteless

but insightful

given the cartoon is a picture of some physician standing over a dead patient suggesting they will do the next review in 3months

this might seem a side note but


The sketch also in some way to me makes me think of the article written by Miller, Garner, Pederson, Symington
https://www.s4me.info/threads/patie...iplinary-care-2025-miller-et-al.44129/page-14

And how they used Maeve in it and her death,

and suggested CBT might have helped her.

still now after her dying, the inquest, and prevent of future deaths process which was supposed to have a considered response with serious action to it etc.

Confused at which point they ever might declare a treatment or ideology is unhelpful.

but somehow this visual makes me understand the ‘perspective’ of some


and this does link to this thread because it seems to be the same ‘thing’ going on

 

[Kitty]

Posted on behalf of @MSEsperanza


Anyone had a look yet at the "data" and how they used them in the "study" ?

Some clues in the supplementary file (docx) :

http://asset.jmir.pub/assets/ff5aa971f764b30b7907866303fbe6ca.docx

Had only a brief look but how they searched for data and analyzed them to me seems even more ridiculous than the underlying idea to think what some people say on twitter could be in any way representative of a group of people defined by other features than being on twitter.

 

[Kitty]

Posted on behalf of @MSEsperanza


As expected, this piece is just another evidence for how Busse and authors he likes to quote as alleged evidence stand out with misrepresenting evidence and references that seem convenient to be twisted.

Thank you to all the forum people who so quickly spotted all the twisting.

Busse doesn't seem to explicitly mention the Cochrane IAG and its abandoning in any way? – so hopefully people click on the reference that is the S4ME petition explaining what happened.

 

[rvallee]

At what point does such blatantly and grossly selective citation and (mis)interpretation of evidence become fraud and corruption?

Societies run on honor systems. Rules, laws, regulations don't really matter all that much, enforcement and politics do. Even concepts like fraud and corruption are all about what those making decisions, and those supporting them, decide is. It's not about facts, it's about perception. Facts don't really matter that much. In fact they usually don't really matter unless someone can make money from them. Which covers a lot, but not this.

So, it will be known as fraud and corruption once it becomes possible to make money, and therefore power, out of real facts, such as effective treatments, that contradict this narrative. Then almost everyone will "have always known".

I often think of this one French doctor's comment early in the LC days, who basically said: "if there's a positive COVID test, it's probably Long/Post COVID, if not, then it's psychosomatic". The truth is that any patient suffering from anything that doesn't have visible signs could be put in front of a clinician looking for a psychosomatic explanation and they would be fooled 100% of the time.

Doesn't matter what the illness is: cancer, MS, thyroid problems, they literally can't tell the difference. It's all in perception, they depend on external facts to dissuade them, but if those facts are withheld from them, every last one of them would insist that this patient is clearly suffering from the psychosomatics.

Basically, it's technically not fraud if it's standard. Even when it is. Humans are weird like that.

 

[Jonathan Edwards]

As I expected, most of the authors, including the first author, are medical students. One is qualified with a BSc in 'kinesiology and exercise science'. Presumably just a fun project for a student to show how dreadful and misguided patients are. Good training for being a paternalistic physician.

 

[Utsikt]

Busse on Xitter when asked about the reference to suicides:

 

[Jonathan Edwards]

What is that supposed to mean?
Like 'we have no data on causation - only several tragic cases of MIAD requested by people living with severe multiple sclerosis who had (reasonably) lost hope of recovery'.

 

[Utsikt]

What is that supposed to mean?
Like 'we have no data on causation - only several tragic cases of MIAD requested by people living with severe multiple sclerosis who had (reasonably) lost hope of recovery'.

Beats me..

 

[Nightsong]

I just realised why this paper sounded so familiar, as well as the reference to an anonymous donor - there was a thread on the preprint:

https://s4me.info/threads/public-pe...iment-analysis-khakban-zeraatkar-busse.41461/

According to the comment I left on the thread at the time, the Wiebe MAID paper that they reference states that there were 8 patients who had been diagnosed with ME/CFS & that many of the cases "had multiple diagnoses, including concurrent mental illnesses".

 

[Trish]

As I expected, most of the authors, including the first author, are medical students. One is qualified with a BSc in 'kinesiology and exercise science'. Presumably just a fun project for a student to show how dreadful and misguided patients are. Good training for being a paternalistic physician.

And Jason Busse is a chiropractor, not a physician.

 

[Utsikt]

And Jason Busse is a chiropractor, not a physician.

His Twitter bio says he’s a professor of anesthesia.

 

[Dolphin]

From ME Research UK:

A team at McMaster University in Canada set out to explore posts on Twitter – rebranded as X – to understand the concerns and priorities of people with ME/CFS. Read more about what the researchers found here: https://bit.ly/3ZyOGzr

https://twitter.com/user/status/1926971827575726087

 

[Yann04]

From ME Research UK:

A team at McMaster University in Canada set out to explore posts on Twitter – rebranded as X – to understand the concerns and priorities of people with ME/CFS. Read more about what the researchers found here: https://bit.ly/3ZyOGzr

It worries me that they shared that so uncritically??

 

[dave30th]

Most of these opinions have little to do with the actual data from their study.

that was my impression. It's like 2 papers in one!! Some interesting data about what people think, and then a discussion section that says--everything patients are saying is wrong.

 

[dave30th]

It worries me that they shared that so uncritically??

I assume they didn't read it fully but posted it because the data are interesting, and they didn't notice that it was really an editorial cosplaying as research or at least piggy-backing heavily on research. I made the same mistake when I first read it or saw a release or scanned the data part of the abstract. It was only as I read it that I realized what it was.

 

[dave30th]

https://virology.ws/2025/06/02/tria...r-research-from-canadian-get-cbt-campaigners/

 

[Utsikt]

Propaganda Cosplaying as Twitter “Research” from Canadian GET/CBT Campaigners

Not activists?

I particularly liked the highlighting or the intellectual conflicts of interests.

 

[SNT Gatchaman]

@dave30th you might want to clarify (perhaps in any future piece) that Busse is not a "professor of anaesthesiology". He's a professor in the Dept of Anesthesia. Anaesthesiology is a medical speciality - ie you need an MD/equivalent and then 5-8 yrs specialty training to be an anaesthetist/anesthesiologist. Busse is a chiropracter with a BSc, MSc, PhD.

 

[dave30th]

Busse is not a "professor of anaesthesiology"

good catch, right. I know he's not a doctor but his doctorate is, I assume, in anaesthesia. So he's a professor of anaesthesia rather than anaesthesiology.

 

[SNT Gatchaman]

No he has no training in anaesthesia itself. From the 2008 profile linked above —

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 [Link] 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.

None of that directly translates to practical knowledge of anaesthesia: particularly as it relates to perioperative or critical care. It crosses into chronic pain management, but looking at the ORCID record his research there appears to more relate to statistics, reviews of prior studies and meta-analyses, rather than developing new knowledge of the complex pharmacology of anaesthesia - instead CBT, psychological risk factors etc.