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

Impact of the COVID-19 Pandemic and the 2021 National Institute for Health and Care Excellence Guidelines on Public Perspectives Toward Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Thematic and Sentiment Analysis on Twitter (Rebranded as X)

Iliya Khakban 1, Shagun Jain 1, Joseph Gallab 1, Blossom Dharmaraj 1, Fangwen Zhou 1, Cynthia Lokker 1, Wael Abdelkader 1, Dena Zeraatkar 1, Jason W Busse 1

Abstract

Background: Myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), is a complex illness that typically presents with disabling fatigue and cognitive and functional impairment. The etiology and management of ME/CFS remain contentious and patients often describe their experiences through social media.

Objective: We explored public discourse on Twitter (rebranded as X) to understand the concerns and priorities of individuals living with ME/CFS, with a focus on (1) the COVID-19 pandemic and (2) publication of the 2021 UK National Institute for Health and Care Excellence (NICE) guidelines on the diagnosis and management of ME/CFS.

Methods: We used the Twitter application programming interface to collect tweets related to ME/CFS posted between January 1, 2010, and January 30, 2024. Tweets were sorted into 3 chronological periods (pre-COVID-19 pandemic, post-COVID-19 pandemic, and post-UK 2021 NICE Guidelines publication). A Robustly Optimized Bidirectional Embedding Representations from Transformers Pretraining Approach (RoBERTa) language processing model was used to categorize the sentiment of tweets as positive, negative, or neutral. We identified tweets that mentioned COVID-19, the UK NICE guidelines, and key themes identified through latent Dirichlet allocation (ie, fibromyalgia, research, and treatment). We sampled 1000 random tweets from each theme to identify subthemes and representative quotes.

Results: We retrieved 906,404 tweets, of which 427,824 (47.2%) were neutral, 369,371 (40.75%) were negative, and 109,209 (12.05%) were positive. Over time, both the proportion of negative and positive tweets increased, and the proportion of neutral tweets decreased (P<.001 for all changes). Tweets mentioning fibromyalgia acknowledged similarities with ME/CFS, stigmatization associated with both disorders, and lack of effective treatments. Treatment-related tweets often described frustration with ME/CFS labeled as mental illness, dismissal of concerns by health care providers, and the need to seek out "good physicians" who viewed ME/CFS as a physical disorder. Tweets on research typically praised studies of biomarkers and biomedical therapies, called for greater investment in biomedical research, and expressed frustration with studies suggesting a biopsychosocial etiology for ME/CFS or supporting management with psychotherapy or graduated activity. Tweets about the UK NICE guidelines expressed frustration with the 2007 version that recommended cognitive behavioral therapy and graded exercise therapy, and a prolonged campaign by advocacy organizations to influence subsequent versions. Tweets showed high acceptance of the 2021 UK NICE guidelines, which were seen to validate ME/CFS as a biomedical disease and recommended against graded exercise therapy. Tweets about COVID-19 often noted overlaps between post-COVID-19 condition and ME/CFS, including claims of a common biological pathway, and advised there was no cure for either condition.

Conclusions: Our findings suggest research is needed to inform how best to support patients' engagement with evidence-based care. Furthermore, while patient involvement with ME/CFS research is critical, unmanaged intellectual conflicts of interest may threaten the trustworthiness of research efforts.


https://www.jmir.org/2025/1/e65087

 

“We looked at 900,000 Tweets going back 15 years! ME/CFS patients claim responsibility for replacing evidence-based, safe and long-proven, effective interventions with pseudoscience, all because they think there’s something wrong with having a psychological illness they perceive as physical. They are a rather negative bunch and there’s really no such thing as PEM.

The guideline revision was a horrible process and actual medics still protest to little avail, and the current paradigm perpetuates psych stigma for the sake of patient “advocacy.” Their groundless disdain for CBT & GET which seems to help everyone providing they’re not on Twitter is truly a travesty of medicine. Recovered pts esp those fine folks from Norway recoil from their unpleasantness and aggression.

We know all this is true because PACE, Cochrane, a truly outstanding choice of *vintage* references that, trust us, only resemble cherries, and machine learning! 900,000 Tweets, and we got this published after only 10 months of waiting since we submitted it last August. The end.”

Sorry for the formatting, I’m on a tablet. Mods if editing is needed, apologies, just can’t hack it atm. I probably shouldn’t have wasted energy reading it. It sucks, truly.

 

Where is that from?

 

These people apparently do not understand the difference between correlation and causation, and certainly do not understand the likely direction!

 

A blatant lie. GET and CBT research was downgraded because it was terrible, especially with lack of blinding and subjective outcomes.

 

S4ME gets an indirect mention!

 

This is just pure propaganda at this point..

 

We need more research on how to more effectively harm and gaslight patients.

«Shared decision-making» is code for «let the abuser continue being involved». The CCI mention is warranted, but hardly representative.

Of course they do not mention how researchers with intellectual conflicts of interest can compromise the research process and reduce the trustworthiness of results!

 

https://twitter.com/user/status/1925285854613737552

 

I agree, but I suspect for completely different reasons!

I don’t think they are going to like the results of those efforts..

This is just vile. Imagine blaming the patients for essentially killing each other. F*** off.

 

It really is pathetic, coming out just after Zhang et al. show important genetic causal links.

It seems they found a lot of negative messages about care and research - so they feel they need to send out a negative message about patients.

 

Jason Busse co-authored this paper we’ve discussed at length with Garner:


Interventions for the management of long covid post-covid condition: living systematic review, 2024, Zeraatkar, Flottorp, Garner, Busse+

 

How convenient.

 

This would be funny if it wasn’t so pathetic. It’s sentiment analysis on twitter, lol. Not going to waste any energy reading or thinking about it.

I will add they used RoBERTa for the sentiment analysis, this is an old and small mode based on Google’s BERT. Maybe it’s good in specific circumstances but it’s not anything near current models, just in parameter size it’s under 500 million compared to the 27 billion parameter models some here run on their laptops and hundreds of billions in frontier models

 

I suspect they’re not any more fond of you than they are of us. Actually I suspect most of those whose names are on this don’t know what it’s about beyond what they were told by Busse. I think one might be a CBT comrade true believer, but—and honestly this is just speculation—I’m assuming it’s mostly his show. I mean, do we even have any reason to believe they even know who you are?

But there will likely be more than enough pushback on Twitter to nail down the confirmation bias I’m sure he’s happy to spread if there are actually any in this group—Jeremy Devine is McMaster, too, isn’t he—who are as yet uninitiated to our corner of the internet.

@Utsikt I had to dash off a few sarcasm-heavy paras just to blow off some steam. Just my take on how they chose to spin this crap.

 

This does not reflect public perspectives since almost no one cares or talks about ME/CFS outside of those affected. Instead it reflects what the patient community thinks, which is still valuable but a wholly different thing from "public perspectives", since it's also very obvious that we pretty much exclusively talk among ourselves, with about 95-99% of all discussions made strictly by patients.

You do have to marvel at how easily they reconcile analyzing social media discussion, framed as a "public perspective", when it actually represented the isolated bubble of the patient community, while holding on to the false notion that such views are just a small, vocal minority. It's just like the fabled "silent majority" in politics, people who never seem to exist, yet whose alluded desires are always front-and-center.

Reading through some of the rest, this is just clumsy propaganda, about as serious as this:

You know what, please do that. Spend a lot of effort and money on the social media that was a nexus of the patient community up to, you know, events. Which the patient community did not mostly abandon after it took a turn into far-right trolling. Buy clumsy ads to feature alongside crypto scams and boner pills. Please spend a lot of effort on that, people will totally not be boo-urning you.

 

Reference 48 is the Wessely study that found no association, but all other studies did find an association:
Chronic fatigue syndrome after infectious mononucleosis in adolescents - PubMed
Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study - PubMed
Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever - PubMed
Chronic fatigue syndrome 5 years after giardiasis: differential diagnoses, characteristics and natural course - PMC

Reference 49 is a case-control study without a longitudinal design. Reference 50 is about chronic fatigue, not CFS.

EDIT: I originally quoted the wrong section here:

Seems like the world upside down that they are suggesting that ME/CFS patients have a conflict of interest and should therefore not be involved in research and guidelines on ME/CFS.