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

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

Agree with this.

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

 

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.

 

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.

 

Please don't presume to speak on my behalf. I posted exactly as I 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 I did some unpublished work looking at forums (not health ones) but we had dumps of the forum databases that someone had hacked and published this allowed for some aspects to be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.