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

[SNT Gatchaman]

Now published - see here


Preprint
Public Perspectives on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Twitter Thematic and Sentiment Analysis
Iliya Khakban; Shagun Jain; Joseph Gallab; Blossom Dharmaraj; Cynthia Lokker; Wael Abdelkader; Dena Zeraatkar; Jason Walter Busse

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

OBJECTIVES
We explored public discourse on Twitter/X to understand the concerns and priorities of individuals living with ME/CFS.

METHODS
We used the Twitter application programming interface to collect tweets related to ME/CFS posted between January 1st, 2010, and January 30th, 2024. Tweets were sorted into three chronological time periods (pre-COVID-19, post-COVID-19, and post-UK NICE Guidelines). A Robustly Optimized BERT Pretraining Approach language processing model was used to categorize the sentiment of tweets as positive, negative, or neutral. We constructed word clouds for all tweets in the three pre-specified time periods and identified tweets that mentioned COVID, the UK NICE guidelines, and key themes that were prevalent among the word clouds (i.e., fibromyalgia, research, physicians). We sampled 1,000 random tweets from each theme, which were independently reviewed in duplicate to identify subthemes and representative quotes.

RESULTS
We retrieved 905,718 tweets, of which 53% were neutral, 38% were negative, and 9% were positive. Word clouds highlighted patients’ symptoms and shifted from fibromyalgia being mentioned pre-COVID to long COVID mentioned after the onset of the COVID-19 pandemic. Tweets mentioning fibromyalgia acknowledged the similarities with ME/CFS, stigmatization associated with both disorders, and lack of effective treatments. Physician-related tweets often described frustration with ME/CFS labelled as mental illness, dismissal of complaints by healthcare providers, and the need to seek out ‘good doctors’ 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 that suggested a biopsychosocial etiology for ME/CFS or those supporting management with psychotherapy or graduated activity. Tweets about the UK NICE guidelines expressed frustration with the 2007 version that recommended cognitive behavioral therapy (CBT) and graded exercise therapy (GET), and a prolonged campaign by advocacy organizations to influence subsequent versions. Tweets showed very high acceptance of the 2021 UK NICE guideline which was seen to validate ME/CFS as a biomedical disease and removed recommendations in favor of CBT and GET. Tweets about COVID-19 typically proposed overlaps between long COVID and ME/CFS, including claims of a common biological pathway, and advised there was no cure for either condition.

CONCLUSIONS
Our findings suggest that public discourse on Twitter regarding ME/CFS highlights stigmatization and dismissal by physicians; frustration with management approaches focused on activity and psychotherapy; a desire for research that validates a biomedical model of etiology and effective treatments for ME/CFS; and an overlap between fibromyalgia, long COVID, and ME/CFS.

Link | PDF (JMIR Preprints)

 

[Nightsong]

Another McMaster paper, so naturally there's a whine about the NICE guideline and promotion of their usual poorly evidenced claims about treatment and recovery. Funded by "an anonymous donor". A couple of minor points:

Prospective studies that control for ascertainment bias have failed to show an association between acute infection and development of ME/CFS [31]

Ref 31 is a 1995 Wessely paper. The most reliable information on this surely comes from the Dubbo & Jason prospective EBV studies.

A survey of members of the Canadian Association of Medical Assistance in Dying (MAID) Assessors and Providers found ME/CFS was the 2nd most common non-fatal condition for which MAID was requested. [63]

The reference here is "Medical assistance in dying when natural death is not reasonably foreseeable" (Wiebe et al., 2023), which portrays a complex story involving a limited number of patients:

Twenty-three MAID providers submitted information about 54 patients with track 2 assessments (including 21 patients who received MAID) during the 6-month period.

The most common diagnoses were chronic pain syndromes, affecting 28 patients (51.9%), which included fibromyalgia, central sensitization syndrome, and chronic neuropathic pain. Myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS), occurred in 8 patients (14.8%). Other neurologic diagnoses included traumatic brain injury, Parkinson disease, and multiple sclerosis; 1 person had tetraplegia. Many had multiple diagnoses.
...
Many had multiple diagnoses, including concurrent mental illnesses.

 

[bobbler]

Another McMaster paper, so naturally there's a whine about the NICE guideline and promotion of their usual poorly evidenced claims about treatment and recovery. Funded by "an anonymous donor". A couple of minor points:

Ref 31 is a 1995 Wessely paper. The most reliable information on this surely comes from the Dubbo & Jason prospective EBV studies.

The reference here is "Medical assistance in dying when natural death is not reasonably foreseeable" (Wiebe et al., 2023), which portrays a complex story involving a limited number of patients:

Anonymous donor

have we ever before seen a paper that is ‘funded by an anonymous donor’ ? it seems beyond atypical

under conflicts of interest it then says “the authors declare no conflicts of interest” but normally you’d be able to see who the funder is as that in itself could be ‘an interest’?

particularly when combined with being from McMaster and the connection of that with Cochrane - am I correct Cochrane is housed there and provided funding by McMaster

and then there is the current Canadian LC guideline etc

 

[bobbler]

The last para in the discussion- before strengths and limitations - is interesting

I can’t cut and paste it right now but it is dedicated to forthrightly saying the idea that patients don’t recover from me/cfs is incorrect and has been proven wrong by evidence

then uses ‘the entire website of Recovery Norge’ as said evidence apparently proving that

it feels like there is a circle here that is revealing itself

as no one really knows of ‘recovery Norway’ as it was pure invention a few years ago just trying to be made into ‘something’ by the people who it seems created it to try and claim evidence ‘people recovered’ pointing at their own marketing as if it’s not just that. It’s a really weird thing to describe.

Yet this is trying to use this paper to spread the myth it’s some sort of established, organic, well-known patient website ? Ie advertising it via its own papers ?

is the Journal of Meducal Internet Resesrch well-reputed snd who are its editors?

 

[bobbler]

Is Recovery Norway the Lightening Process ‘new marketing’ post Nice guidelines when Parker was very displeased and did that PowerPoint slideshow with all the dark clouds and quite an angry tone of voice ? And then about a year later this started springing up?

Or is it some sort of joined forces ?

or is it just coincidence that it’s aim is collecting LP type recovery stories?

Anonymous donor

have we ever before seen a paper that is ‘funded by an anonymous donor’ ? it seems beyond atypical

under conflicts of interest it then says “the authors declare no conflicts of interest” but normally you’d be able to see who the funder is as that in itself could be ‘an interest’?

particularly when combined with being from McMaster and the connection of that with Cochrane - am I correct Cochrane is housed there and provided funding by McMaster

and then there is the current Canadian LC guideline etc

ok there is another paper on here from the same author (Busse) and they the McMaster Trust that is also using the ‘anonymous donor’ funding line

so this new thing of the anonymous donor seems to have funded a ‘package’ of articles (did they have ‘research’ in them?) on the subject of me/cfs but very much with a pro recovery Norway type theme

yet I’m not sure I’ve seen any ‘funded by anonymous donor’ ever before as s paper

fir example do we assume this means it isn’t actually a paper associated with McMaster - because people would usually be ‘bought out’ of their academic contract gif thd purposes of a grant fir a project . And yet if it’s the McMaster trust that makes no sense. And what actually even needed to be paid for in this funding if they were already academics there?

 

[rvallee]

Prospective studies that control for ascertainment bias have failed to show an association between acute infection and development of ME/CFS [31]

That was also true of every study of EBV showing such an association for MS. Until the one that did. And then of course there's Long Covid, but that's just inconvenient so whatever. And the many, many pathogens where such an association is clearly there.

But they can tell you for sure that there is no teapot orbiting the Sun in this precise location, and everyone knows this means there can never be any teapot, or teapot-like object, found orbiting the Sun at any location.

It's absurd how unserious medical research can be. Most groups of random teenagers would do far better than this.

 

[Three Chord Monty]

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

 

[Three Chord Monty]

“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.

 

[Utsikt]

“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?

 

[Utsikt]

Unfortunately, several studies have found that, due to a lack of objective diagnostic markers, people living with ME/CFS often perceive stigmatization and experience delegitimizing practices by physicians [5,39]. These experiences may have clinical implications, as a recent systematic review found that stigma is associated with increased pain intensity, disability, and depression among people living with chronic pain [40]. Conversely, physician empathy has been associated with improved outcomes [41,42].

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

 

[Utsikt]

The updated NICE guidance justified changes in recommendations regarding CBT and GET for 4 reasons. First, by downgrading the evidence for indirectness because trials that provided supporting evidence did not require patients to screen positive for postexertional malaise (PEM), even though treatment effects were similar across patients with different diagnostic criteria (including those with PEM). Second, they rejected evidence from randomized trials that found GET was not harmful in favor of anecdotal reports by patients that GET worsened their symptoms. Third, they considered outcomes at the longest follow-up reported, which for the PACE trial meant results were confounded by cross-over. Finally, the guideline panel rejected evidence from Cochrane reviews because they did not report on mortality—an outcome that Cochrane review authors did not view as relevant for trials of CBT or GET [55].

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

 

[Hutan]

Looks like a good summary @Three Chord Monty,

Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) [1], is characterized by persistent fatigue, cognitive dysfunction, and impaired daily functioning [2]. The global prevalence of ME/CFS has been estimated at 0.89% (95% CI 0.6%-1.33%), and it is more common among women aged 40 to 50 years [3].

That's just the first two sentences. A nice setting of the scene - it's all about those middle aged women who can't think properly. No mention of PEM.

 

[Utsikt]

Our analysis suggests the updated NICE guideline was well-received by patients and may be associated with the increase in positive tweets at this time. However, 4 members of the 2021 NICE guideline development committee resigned in protest [56], representatives of 7 UK medical groups (including the Royal College of Physicians) signed a joint statement relaying concerns with the guideline [57], and more than 50 international specialists analyzed the guideline and concluded that “the consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability” [58]. At present, there are at least 2 ongoing campaigns by ME/CFS advocacy groups to have other publications they disagree with retracted: a Cochrane review that found GET was helpful for ME/CFS [59] and a deep phenotyping study of patients with ME/CFS that found functional limitations were due to “altered effort preference” [60].

S4ME gets an indirect mention!

 

[Utsikt]

The notion that recovery from ME/CFS is not possible is inconsistent with the evidence. Although only 5% of patients experience full recovery without targeted intervention [66], observational studies have reported a recovery rate of 18% following CBT [67,68]. There are entire organizations dedicated to recovered patients, such as Recovery Norge [69]. Interviews with patients who have fully recovered from ME/CFS reveal a consistent pattern of engagement with graduated exercise and psychotherapy to increase self-agency [70,71]. Furthermore, recovery from ME/CFS is associated with not attributing illness to a physical cause and a greater sense of control over symptoms [66]. However, patients who achieve recovery report conflicts with patients who have not, including skepticism about whether they had ME/CFS. Once patients recover from ME/CFS, they are less likely to remain engaged with online support groups [72].

This is just pure propaganda at this point..

 

[Utsikt]

Our findings highlight several important issues. First, although current evidence supports exercise therapy [77] and CBT [78] for the management of ME/CFS, some patients find these approaches unacceptable. In part, due to concerns about harm (eg, PEM following GET) and stigmatization (with CBT). Further research is needed to inform how best to support patients’ engagement with evidence-based care.

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

Second, patients often report unsatisfactory health care encounters leading to disengagement and a desire to attend clinicians that view ME/CFS as purely physical disorder. For example, some surgeons offer cranial and spinal decompression as a treatment for ME/CFS [79], despite a lack of evidence supporting this approach. These findings reinforce the importance of building therapeutic relationships with patients living with ME/CFS that include addressing possible concerns about mind-body treatment approaches. Patients who view their health care provider as sympathetic may be more willing to engage in shared decision-making about interventions they are considering.

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

Third, our findings with respect to the potential influence of advocacy efforts on science are especially critical given the increasingly recognized importance of including patient partners in research [80]. Involvement of patient partners can improve the quality and relevance of research efforts [81]; however, participants with important intellectual conflicts of interest can compromise the research process and reduce the trustworthiness of results [82].

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

 

[Adam pwme]

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

 

[Utsikt]

Future Directions
Twitter is an important source of information and communication for people living with ME/CFS. The degree to which advice is credible and consistent with the current best evidence is therefore important [84].

I agree, but I suspect for completely different reasons!

Our findings suggest that some individuals living with ME/CFS who post on Twitter believe that GET is harmful, CBT is ineffective, and recovery is not possible. Efforts should be made to promote the dissemination of evidence-based information on Twitter and assist patients in assessing the credibility of statements made on social media.

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

Removing hope of improvement or recovery from ME/CFS can have dire consequences for some patients [85-88]. A survey of members of the Canadian Association of Medical Assistance in Dying Assessors and Providers found that ME/CFS was the second most common nonfatal condition for which medical assistance in dying was requested [89].

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

 

[Jonathan Edwards]

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.

 

[Yann04]

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+

 

[Utsikt]

This study was funded through an anonymous donor via the McMaster University Trust.

How convenient.