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

I feel like it's important to point out that this was also generally "true" of peptic ulcers and multiple sclerosis and their respective pathogens. Until it wasn't. Plus, I don't think we can say this anymore given, you know, LONG COVID, which they literally mention a lot, yet seem to have missed that, regardless of what they think, there is definitely not just an association, but a specifically causative one. Just because the pathological mechanism isn't understood yet doesn't change that. We also don't know that mechanism for MS and how EBV does its thing.

You know, I don't think these people understand how science works at all. They all seem to operate with the notion that current knowledge is fixed and unchangeable. It may have to do with the fact that their own field of study never actually changes, possibly giving them this incorrect idea that other scientific disciplines work the same way, but they really don't. The contrast with the speed of progress in, say, artificial intelligence, is astounding, like comparing a stationary bicycle with broken pedals to a fighter jet.

Really, it's just the academic version of "nobody knew about X" when someone learns about X, even when X is common knowledge. Toddler thinking, basically. "But where did the hand-puppet go? It was there a moment ago! Oh, it's here again! Oh, noes, gone again, what is this sorcery?!"

 

Strange that the donor remains anonymous because that makes it impossible to assess potential conflicts of interest.

Also a bit difficult to see who would be interested in spending (I suspect ten thousands of dollars) on a study that analyses what ME/CFS patients say on Twitter. The long discussion section reads like an opinion piece where the authors argue that NICE was wrong, that recovery isn't rare, that infections and ME/CFS are not associated but ME/CFS and stress are, that fibromyalgia and ME/CFS are probably the same thing, etc. Most of these opinions have little to do with the actual data from their study.

 

Don't have the energy to look it up at the moment but I'm sure I've seen previous ME/CFS related papers by this group also contain a declaration that they were funded by an anonymous donor.

 

I note that Busse is part of the team of 'Cochrane Insurance Medicine'

Their blurb says:


We work within Cochrane to advocate for systematic reviews that reflect the particular needs of sick or disabled people, as well as society’s needs for sustainable welfare and insurance systems.

We work within the multidisciplinary insurance medicine community to advocate for decision-making based on finding, understanding and using the best available evidence. We do this by carrying out knowledge translation of high quality evidence about health care and social care.


Our Vision
The initiators of CIM envision decision-makers and professionals concerned with medical judgments on diagnosis, prognosis, and effectiveness of interventions in an insurance context to make evidence-informed decisions by using high quality Cochrane reviews of the best available evidence.




All a bit odd?

 

Revisionist.
With recent BMJ piece it's trying to keep a paradigm alive .
It's a huge house of cards .

 

It feels like a conspiracy. But at the end of the day it’s pretty much just explainable by people in power in the medical establishment holding onto an ideology and using their power to that end. It’s no wonder it all feels connected. It is!

 

But why a twitter sentiment analysis instead of the good old “correlation study with dodgy psychosocial questionnaires” or “open label trial with subjective outcomes”

 

It’s probably cheaper to scrape Xitter.

 

One of the biggest takeaways from Long Covid has been how invaluable the patient community is. Especially compared to the bureaucratic indifference and cruelty of the health care industry. It has effectively flipped the old narratives about us, if one is willing to accept how the narratives don't conflict in any way, do not mark a change, but rather is correcting a record that was intentionally poisoned and corrupted.

I see this as trying to flip things back: patients bad, must avoid, self-reinforcing doomerism, and so on. Psychobehavioral ideology has little to do with health, is more of a public relations industry. So here they are, doing bad PR about us, reversing years where the truth of "patients bad" didn't conform to the old script. By making us the enemy, they make themselves the saviors. Or whatever goes on in their minds.

Medicine, like most institutions, needs to invent enemies to account for their failures. Us, social media, TikTok. Anything that contradicts their narratives, they see as a challenge on their power. This is flexing institutional power against what is essentially the only source of good out of Long Covid: the patient community. Hell, without social media, without twitter in particular, there would have never been any talk of LC. It would all have been swept under the rug, a classic story of mass hysteria. So naturally they hate the hell out of it, and have to fight it.

 

Perhaps they lack cooperation of a clinic where sufficient ME/CFS patients go to? I think their previous study was also based on online surveys and their publication on Long Covid was a systematic review.

 

I originally quoted the wrong section here. This is what I was commenting on, from the paper:

 

I’ve found the following two links which give a sense of what it is. Was started up in 2015.


https://www.researchgate.net/public...surance_Medicine_looking_back_looking_forward

https://insuremed.cochrane.org/sites/insuremed.cochrane.org/files/uploads/annualreport2020.pdf

You can scroll to the bottom to see the logos of the supporters (of annual report? Whole thing?)

 

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

 

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.

 

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.

 

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.

 

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.