Preprint Public Perspectives on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Twitter Thematic and Sentiment Analysis, , Khakban, Zeraatkar, Busse+

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)

 

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

 

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?

 

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?

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?

 

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.