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

[Sean]

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.

IOW, much the same as any other community with a common interest on health policy. Or just about any other science-based issue.

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.

Agree with this.

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.

Yep, that assertion is just silly. We wouldn't be having this fight debate if there was genuine science-based consensus.

 

[Sean]

Critiques covered outcome measurement, effect size calculation, research integrity, and more, but the central issue became subject selection in the studies.​

Nope. The central issue is lack of adequate control for known biases and confounders in the research, and the resultant lack of critical and accurate data about efficacy, effect size, and causal relationships.

And the failure to take this into proper account in clinical, medico-legal, and policy decisions.

And, of course, that all this is a deliberate choice by one side of the debate.

That is the core technical, administrative, political, and moral issue.

The rest is just details.

 

[Adrian]

Nope. The central issue is lack of adequate control for known biases and confounders in the research, and the resultant lack of critical and accurate data about efficacy, effect size, and causal relationships.

From our perspective that is the case and we know that the data is meaningless however the subjects were selected. But there has been a lot of dicussion in the past about subject selection so I can see how someone having a quick look at patient forums could come to that conclusion. I wonder if it demonstrates a lack of depth of understanding of how patient forums work and what is being discussed. Which I think may represent one of the major issues with this paper.

 

[adambeyoncelowe]

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.

Exactly. The cost effectiveness was the same whether GRADE was used or not, and whether outcomes were rated low or not -- because it was based on triallists' own published data, not any subjective assessment of that data. And by their own data, they proved their own treatment wasn't cost effective.

It's like doing a trial that shows 1% benefit for homoeopathy, then arguing about whether you did the trial well or not as a means of trying to get homoeopathy recommended. It doesn't matter whether you did the trial well or not, because you still only showed a 1% benefit either way.

 

[Esther12]

Not read the paper yet, but interested in all the discussion.

One thing I thought to add is that while I share people's tendency to be most interested in discussing the things I'm more critical of, it can also be good to acknowledge the work that's gone into papers that seem to be making a real attempt to get useful info into the academic literature,including the work of going through peer review (with who knows who as reviewers). This can seem a thankless task, and from people's comments it does seem that this paper is far far better than some of the others we've seen published on this topic. When authors Google to see if patients are reading there work it's good for them to find any possible problem being highlighted and explained, but also good to see people acknowledging the benefits of their work. I know people have been saying positive things, but I thought that to anyone not used to the culture of the forum this thread could seem more negative than I think the people posting intended.

 

[Trish]

I know people have been saying positive things, but I thought that to anyone not used to the culture of the forum this thread could seem more negative than I think the people posting intended.

Please don't presume to speak on my behalf. I posted exactly as I intended.

 

[Andy]

Not read the paper yet, but interested in all the discussion.

One thing I thought to add is that while I share people's tendency to be most interested in discussing the things I'm more critical of, it can also be good to acknowledge the work that's gone into papers that seem to be making a real attempt to get useful info into the academic literature,including the work of going through peer review (with who knows who as reviewers). This can seem a thankless task, and from people's comments it does seem that this paper is far far better than some of the others we've seen published on this topic. When authors Google to see if patients are reading there work it's good for them to find any possible problem being highlighted and explained, but also good to see people acknowledging the benefits of their work. I know people have been saying positive things, but I thought that to anyone not used to the culture of the forum this thread could seem more negative than I think the people posting intended.

If you have a suggestion on how the rules around posting on the forum might be, in your eyes, improved so as to change the culture of the forum then I would encourage you to post it in the Suggestions and feedback sub-forum, https://www.s4me.info/forums/suggestions-and-feedback.16/

 

[Adrian]

Not read the paper yet, but interested in all the discussion.

One thing I thought to add is that while I share people's tendency to be most interested in discussing the things I'm more critical of, it can also be good to acknowledge the work that's gone into papers that seem to be making a real attempt to get useful info into the academic literature,including the work of going through peer review (with who knows who as reviewers). This can seem a thankless task, and from people's comments it does seem that this paper is far far better than some of the others we've seen published on this topic. When authors Google to see if patients are reading there work it's good for them to find any possible problem being highlighted and explained, but also good to see people acknowledging the benefits of their work. I know people have been saying positive things, but I thought that to anyone not used to the culture of the forum this thread could seem more negative than I think the people posting intended.

I think there is some truth in that in that we pull things apart. But I also see that happening in academia where questions are often about potential issues although a session chair of a conference will normally make positive comments.

I've not had a chance to do anything but skim the paper but I suspect there are positive things in it and it does feel like a good subject area to study. However, its also a hard area to study. I did some unpublished work looking at forums (not health ones) but we had dumps of the forum databases that someone had hacked and published this allowed for some aspects to be really well explored.

What I think is hard is to understand what happens on a forum like this and to really internalize and look at both the open discussions, members only threads and then be aware of other conversations that happen behind the scenes.

I feel very strongly that patient forums (this and previous ones) have had a big impact in helping change the agenda around ME but I realize that some (or much of that happened behind the scenes and doesn't necessarily get associated with the forums - for example the paper that @Jonathan Edwards, @Simon M and others wrote from the other place or the Harms paper that Graham did). Also the various pieces of analysis of PACE that have been influenced by discussions and how the forum has helped educate and inform.

I think there is a really good story but one that probably won't surface or be told which I think is a shame because there is a powerful story of patients getting together and making a difference through reasoned criticism.