Online Health Communities in Controversy over ME/CFS and Long Covid, 2023, Jackson

T

Tom Kindlon

Senior Member (Voting Rights)
Free fulltext:
https://ejhc.org/article/view/3559

Online Health Communities in Controversy over ME/CFS and Long Covid
Authors

Sally Jackson
Department of Communication, University of Illinois at Urbana-Champaign, United States of America https://orcid.org/0000-0001-6000-4191

DOI:
https://doi.org/10.47368/ejhc.2023.203

Keywords:
argumentation, controversy, chronic fatigue syndrome, myalgic encephalomyelitis, Long Covid

Abstract

The condition known variously as myalgic encephalomyelitis, chronic fatigue syndrome, or ME/CFS has been steeped in controversy for 40 years or more.

Long Covid, first noticed and named in 2020, has become entangled with the ME/CFS controversy because of striking similarities in the experiences of patients suffering from the two illnesses.

Online health communities (OHCs) have played central roles in both controversies, but these are not the kinds of roles that have been so well-documented in prior literature.

While prior research has established many ways in which participation in an OHC may benefit or otherwise affect community members themselves, this essay focuses on how OHCs contribute to positional shifts in health controversies that involve other communities as well.

Using a framework for understanding health controversies as argumentative polylogues,

I show that OHCs arguing with other players have made contributions that are both effective in gaining ground for the OHCs' own goals and in elevating the overall quality of the debate.

Further, in some cases these contributions have been so innovative as to suggest surprising future trajectories for OHCs.


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Moved posts



“But an institutional position, even when it becomes untenable, cannot just be abandoned. It must be deinstitutionalised (e.g., by replacing one published guideline with another), and deinstitutionalisation of a position requires very convincing argumentation.”
 
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Adam pwme said:
deinstitutionalisation of a position requires very convincing argumentation
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This position is partly why its taken so long. Its not about argument in my view, but mainly medical economics and politics. Which of course require argument to improve, but the failures to recognize the social and political and economic positions delay change.
 
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Adam pwme said:


“But an institutional position, even when it becomes untenable, cannot just be abandoned. It must be deinstitutionalised (e.g., by replacing one published guideline with another), and deinstitutionalisation of a position requires very convincing argumentation.”
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I had a quick skim of the paper and I think it doesn't reflect online health communities as I would see them. Something that worries me is the separation of science from patients as if they are two different communities. I think many here have a science background and that helps bring a standard of debate but having people from a diverse set of disiplines also brings a range of views and an unwillingness to accept group think that happens in certain quite closed groups of scientists where bad methodology becomes the norm.
 
Not sure I agree with this [bolding mine],

"In the consultation [of the 2007 NICE Guideline] over the surveillance proposal, OHCs shifted much of their effort from trying to get patient surveys taken more seriously to trying to get RCTs taken less seriously. The committee that drafted CG53 had explained that “information gathered through patient surveys is generally considered as relatively low-level evidence” when weighed against RCTs (NICE, 2007a, pp. 77-78). In 2017 multiple OHCs set out to show that these particular RCTs did not deserve this confidence. Critiques covered outcome measurement, effect size calculation, research integrity, and more, but the central issue became subject selection in the studies. The published RCTs on CBT and GET uniformly used trial eligibility criteria that, according to patient organisations, excluded many of the most seriously afflicted and could include people whose fatigue resulted from something other than ME/CFS.11 This meant that subjects showing improvement in the RCTs might well simply be people who did not in fact have ME/CFS as understood by the patient communities. Figure 4 shows one example of this reasoning as an extension of the thread shown in Figure 3. These made clear, at last, how the RCTs could produce results so implausible to anyone with the disease."
 
"Significantly, though, the OHCs [Online Health Communities] studied here pose no threat to the more fundamental idea that science is the path to better health care; both ME/CFS and Long Covid patients are notable for their unshakeable confidence in biomedical science."

Unshakeable confidence in biomedical science done well perhaps.

"But the idea that only professional scientists have any business in ‘science places’ is becoming less tenable as the digital media ecology actively invites non-scientists into those places."

And I think this misses the move towards patient and public involvement in research studies from funders; it's not just the result of the "digital media ecology".
 
I did a quick look through the paper. I think quite a lot of it is OK, except the thing that seems to me to should be a central part of the story that is completely missing or only touched on briefly is the fact that the patient actions were only needed because the clinician researchers (Sharpe, Wessely et al) acted unethically, unscientifically, with prejudiced views of patients, and with financial and personal status and career motivations outside science coming from governments and insurance industry.
 
Andy said:
"But the idea that only professional scientists have any business in ‘science places’ is becoming less tenable as the digital media ecology actively invites non-scientists into those places."

And I think this misses the move towards patient and public involvement in research studies from funders; it's not just the result of the "digital media ecology".
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Yes, again I agree this misses the point. Being a scientist is just being someone who is interested in solving a problem and in thinking clearly. 'Lay' members on ethics committees and such like have been around for decades and done important work. The internet has probably contributed in getting a wider community of science-minded people talking together. But the move to wider consultation has been growing for other reasons over a long period. I sense a stereotypical analysis here that is less interesting than the reality of taking part in a good forum.
 
Trish said:
the patient actions were only needed because the clinician researchers (Sharpe, Wessely et al) acted unethically, unscientifically,
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That is true but more and more I see that what has happened in ME maybe should be happening on a much wider scale in areas where the problem is not unethical or unscientific action but just a lack of motivation to solve the problems that would really matter for patients.

I remember the occasion when, after I made some comments about trying B cell depletion in rheumatoid arthritis that the then Editor of the British Journal Of Rheumatology stood up and said that he didn't;t think we should be trying to cure RA. (Implying that it was more important to measure x-rays and fiddle about with this and that so that researchers could keep busy.)

RA could have been cured by now but in the last 25 years nobody has really tried after my attempt only got half way there. Nobody has tried to find a cure for poly myalgia, or lupus - except for the rare enthusiast trying bone marrow transplantation and failing.

Why are cigarettes still available for sale?

The laziness and hypocrisy of health care science is pervasive. There may be only a few rotten apples but most of the rest are at least overripe or tasteless.
 
Jonathan Edwards said:
That is true but more and more I see that what has happened in ME maybe should be happening on a much wider scale in areas where the problem is not unethical or unscientific action but just a lack of motivation to solve the problems that would really matter for patients.
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I think it's far more than a lack of motivation to solve the problem when there is a powerful group of clinicians actively promoting misinformation. We might not be further forward yet with understanding or treatment of ME/CFS even without the misinformation, but before they were around, as far as I know, people with ME/CFS were treated with more sympathy and belief by clinicians. Convalescence and rest for as long as needed was a recognised strategy for those I knew with post infectious debility and ME in the days before Wessely.
 
Trish said:
I think it's far more than a lack of motivation to solve the problem when there is a powerful group of clinicians actively promoting misinformation.
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In this particular case I agree. But there is a spectrum. Another quote I remember from an advisory board where the phase 3 rituximab data were revealed was from a US rheumatologist who openly said that US physicians would not be interested because it only required one infusion a year (and they liked to make money out of as many infusions as possible).
 
"The published RCTs on CBT and GET uniformly used trial eligibility criteria that, according to patient organisations, excluded many of the most seriously afflicted and could include people whose fatigue resulted from something other than ME/CFS.11"

NICE excluded many studies because they didn't require PEM - correct? However, at least on this forum, the main concern was that the studies were unblinded & used subjective outcome criteria - couldn't be relied on/told us nothing i.e. beyond the fact that the objective data didn't indicate improvement.

OK some in the patient community focus on selection criteria, and indeed NICE appears to have, but on this forum ---- crap experimental design --- was/is the main concern.
 
Adrian said:
I had a quick skim of the paper and I think it doesn't reflect online health communities as I would see them. Something that worries me is the separation of science from patients as if they are two different communities. I think many here have a science background and that helps bring a standard of debate but having people from a diverse set of disiplines also brings a range of views and an unwillingness to accept group think that happens in certain quite closed groups of scientists where bad methodology becomes the norm.
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Agreed. The group arguing against the 2007 NICE guidelines includes scientists, clinicians, patient organisations - charities and other types of organisation, support groups, parliamentarians etc, a broad coalition using a range of ways of communication, including but not exclusively online. The paper makes it sound like it was a bunch of individuals on Twitter. No it was much more sophisticated.
 
Adrian said:
I thought it was some of the BPS people who pushed to include studies that didn't mandate PEM as a criteria but that reported sufficient patients that had PEM.
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Yes, but as Peter Barry pointed out at the Round Table, none of this was material since these studies were included. The evidence was further downgraded in relation to recruitment but this actually made no difference to NICE's conclusions. Things were weak enough anyway to say treatment could not be cost effective.

The issue of diagnostic criteria has been high on some people's agendas in the online groups, for sure. I think may be more so in the USA than UK but the groups cross continents.

On reading through I was interested in a section in the conclusion that seemed to highlight the two points that maybe many of us would disagree with.

There is the focus on diagnosis and the suggestion that patients may be better at deciding if ME and CFS are the same thing. I don't see that as realistic. Disease names need to reflect best clinical scientific evidence.

There is also the implication, clearest in Figure 6, that the author sees the online groups as just patients. The reality is that some physicians and other health professionals have always been involved - Charles Shepherd in particular, right back to 2000, and some notable clinical psychologists. Very few of them, but I think the strength of the internet groups has built very much on partnership - even if mostly with researchers not directly involved in the clinical politics.

There are several odd remarks in the piece that sound a bit sniffy as if the author is saying 'well done patient activists but you might do better to be nice to doctors and help out with their research as lay advisors'. There is an odd emphasis on consensus. The reality we have seen is that there is no consensus, or consensus cannot be expected to survive, because vested interests will always try to destroy it. We need to forget what roles in the game groups are expected to play and focus on sticking out for the truth and the common good.
 
Adrian said:
I thought it was some of the BPS people who pushed to include studies that didn't mandate PEM as a criteria but that reported sufficient patients that had PEM.
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Something about PACE having at least 80% or so? All minor details that change nothing, grasping at straws.
 
Jonathan Edwards said:
There is the focus on diagnosis and the suggestion that patients may be better at deciding if ME and CFS are the same thing. I don't see that as realistic. Disease names need to reflect best clinical scientific evidence.
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You could see this as a disease name thing. But I would argue that some are trying to describe two different things and seeing a separation (although I'm never really sure what the separation is if feels it could be on severity; possibly PEM or whether someone improves with CBT!). I don't like the idea of separating a set of patients into two groups based on some symptoms when lots of core symptoms are the same.

Jonathan Edwards said:
There is also the implication, clearest in Figure 6, that the author sees the online groups as just patients. The reality is that some physicians and other health professionals have always been involved - Charles Shepherd in particular, right back to 2000, and some notable clinical psychologists. Very few of them, but I think the strength of the internet groups has built very much on partnership - even if mostly with researchers not directly involved in the clinical politics.
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I would go further than that. Patient groups are made up of people with a diverse set of skills (including physicians and health professionals but also people with backgrounds in other scientific areas or maths and engineering). This gives a much wider experience set to use to interpret the evidence than some of the researchers who have very closed groups. It brings a huge strength to any analysis that groups like this do.
 
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