Where can patients argue with clinicians and scientists about bad science in ME/CFS?

A good way to drive poor Trish and Hutan to drink!
It is exactly what not to do, I think. Some people call it sealioning.

 

If I were doing medical research and there was a patient forum discussing my paper, I'd love to know. Sealioning is something else entirely - it's pretending to ask questions in good faith while actually and deliberately trolling someone with such a barrage of questions that they can't function.

Ah well!

 

Exactly, and that is precisely what would end up happening, or so it would seem from the other side, very politely asking a BPS person to explain all their crap papers for us. Sealioning never seems like sealioning to the person doing it!

 

Then you would be in the minority in my experience, I'm afraid. It doesn't seem that many researchers are interested in the patient point of view, especially when that view is different to their own.

 

But this is precisely what happens at conferences! People present their papers, they get questions, including critical ones from the floor, and they're expected to answer those questions.

I think it would take a very peculiar sort of person to think that questions from patients about their methodology and conclusions were being put as a deliberate attempt to swamp them with so many questions that they couldn't function.

I think we're going to have to agree to disagree on this one!

But IIRC we have had a couple of researchers come here to discuss their papers and react very badly. Have we had a good outcome with this strategy that anyone can remember? I don't follow the threads closely where papers are analysed.

 

I don't know if it's worth naming this person, but at least one researcher clearly reacted badly because of being the lone person defending themself against a whole group of people basically calling them stupid, some implied and in some cases pretty much explicitly. I don't blame them for staying away after that interaction, and hope in the future nothing like that happens again if there's another such researcher visiting the forum.

 

Not any more, sad to say. Critical questions mostly occur when the speaker is persona non grata in the dogma club. Otherwise questions deal with trivia or are just used as adverts for the questioner.

Not to my way of thinking, I think it would be a very usual sort of person. Most people are in science because it is a job, not to help people, even if they like to think that sometimes. All unexpected questions are 'trolling'.

If you mean by 'this strategy' the way things are currently run I would say very much so. We have had good interactions with Chris Ponting and Charlie Hillier keeps a beady eye on what we say and feeds it back and we have had useful dialogue with Chris Armstrong and Rob Wust and with others too. I don't know of anyone much with whom we could have a constructive dialogue who has not pitched in at some point.

And don't forget Andy is actually an integral part of DecodeME. Simon was involved in getting it going.

 

The vast majority of stuff we look through is very bad. It is in most of medical science but for ME/CFS there aren't even that many bright spots. I cannot think of anyone who has been put off coming here who had written something that Wass unreasonably criticised. Very very few papers are really up to scratch and by and large those ones we fall over ourselves saying how interesting they are. If you write bad stuff you will end up being a lone person defending yourself. In fact, I know well from experience that you end up a lone person defending yourself even if three years later you can prove everyone wrong and your research generates tens of billions worth of useful treatment.

If you don't want to name someone, no problem - probably just as well - but if you let me know who you thin has been badly done by I would be interested to know.

 

In the interests of trying to improve the forum, sure, I'm talking about Amy Proal. One of the messages in response to her I'm referring to:

I don't know much about the Marshall Protocol. It might be completely wrong. But I think there are a million ways to have a productive discussion where flaws can be pointed out without the other person feeling attacked. Sure, maybe she gave it some more thought because of the manner of the replies. Just as likely for someone to dig their heels in further when they feel attacked. And in any case, she never participated in any further discussions, which could have potentially been quite interesting with her now leading one of the largest long COVID organizations.

Even if it was someone most of us completely disagreed with - someone who thinks everyone should do GET and CBT and we'd all be fine - these people shouldn't feel afraid to be attacked here. Let them feel comfortable to state their position. If it's wrong, who cares, ten people can point out why it's wrong. And if they do that pointing out in a manner that doesn't feel like an attack, but more like an honest scientific discussion, maybe they'll stick around to try to try to tweak their position a bit to make it more accurate or eventually cede that it is flawed. Could be useful for the forum members as well to have a bit less of an echo chamber that, in my opinion, ascribes far too much malice to all BPS researchers.

The policies of PubPeer come to mind as what we should strive for here:

 

What happens on S4ME really has no parallel. I'm sure that surprises many - isn't academia the place where knowledge is formed, where ideas are debated and tested? Well, not so much. The only real comparison would be journal clubs. Critique occurs in certain prescribed forms, such as letters to the editor, and there are unspoken boundaries as to what can & cannot be said. (And you might want to be judicious as to whom you criticise, as they might well be your next "Reviewer 2", or worse). Most will not be at all used to the kind of critiques, written in blunt language sans the usual academic style, that often do appear on S4ME. While I very much enjoy having ideas refined by fire, and always have done, it's not a common attitude.

Many researchers in the ME/CFS space are also, frankly, third-rate, and some of them are using ME/CFS to pursue their own little niche interests (there are maybe 3 or 4 groups doing genuinely good work, and even some of those don't always have a very good handle on what ME/CFS actually is & is not). Some of the third-raters have conducted fundraising campaigns for research of likely extremely poor quality; these people are not going to care for critical scrutiny.

Most people would be amazed at how petty, prickly, small-minded & trivial academia can be. Then there's the "publish or perish" culture that has taken hold, the emphasis on quantity of research outputs, as well as the commercialisation and poor treatment of staff - I'm told some of the UK's most prestigious universities are now reliant on staff on zero-hours contracts - and, as a poor choice of career these days, there's increasingly a dearth of first-rate minds, who tend to end up in tech or finance.

 

National Institute of Health: Become a public committee member

NIHR committees help decide which research to prioritise and which research projects to fund. Our committees help to ensure that research is high quality, robust, and represents good value for money. It also needs to be relevant to the needs of our diverse society.

Committees usually consist of around 20-30 members who have a broad range of perspectives, knowledge, skills and experience. They include NHS clinicians and practitioners, academics, local government decision makers, and members of the public. The public members will bring the perspective of patients, service users, carers and anyone affected by a research topic.

https://www.nihr.ac.uk/get-involved/committees/public

Note that I have no experience of the above scheme and I actually would doubt that it would be a route to achieve what you want to but it is probably the only open route available to influence funders.

 

Interesting! I wonder whether a PwME could get onto the ME committee? Not sure how the committees are arranged.

 

I'm frankly disappointed that there seems to be no patients' organisation that consists of appalled patients calling for better standards in medical research. There are certainly enough retired researchers and clinicians now in poor health and on the receiving end of crap research to stock such an organisation a hundred times over and get taken seriously.

I'm disappointed that the Patients' Association doesn't seem to be this, or to include it.

 

It may come as a surprise to you, Sasha, but in my experience only a tiny minority of people as a whole have the sort of enquiring interest and sense of needing the right answer that the community here has. The regular S4ME membership consists of a very special sort of person I think. At a medical conference of 2000 delegates I would normally expect to meet up with maybe half a dozen such people. Everyone else has a personal agenda or likes something a bit touchy-feely or in fashion or contrary or whatever.

When I was applying for a consultant post potential referees told me I had to be a bit careful because being critical didn't go down too well with colleagues. In fact the day before the interview for the post that had been more or less created for me to apply for the job was cancelled, presumably because some people in the background weren't happy with that. It was reinstated later in the day but people's careers get rubbed out all the time that way. We have come across the same with at least one member here in the past (not because of activity here).

 

Years back I belonged to a forum where patients challenged researchers and clinicians. It was structured differently than here. Here most of us are patients or carers of pwME. Most of us support the notion that more research into ME/CFS is needed. Not there, but it was a different disease. There close to half challenged the notion that any more research was needed.

The other forum was a Lyme forum. It too was primarily a European entity, although it also was global in reach and constituency. It was every bit as dedicated to science as this is. It had to be. It pitted two sides of the Lyme wars against one another - but the front lines were embedded in the latest studies and research and their implications. Purportedly very high level proponents from both sides were represented.

S4ME is not structured that way. A sub-forum could be created, I suppose, that would support this, and I've suggested this in the past, but it would potentially over tax an already overworked group of moderators.

It had extraordinary debates, and gave rise to a terrible amount of vitriol - but points were made.

I cannot say if it changed the landscape at all, but it seemed to matter back then.

 

This lack of critical thinking, and unwillingness to face critical thinking, is horrific. I wonder if it's more common in medicine because of its hierarchical nature.

But once escaped from any consideration of career, and safely in retirement, ex-scientists and ex-clinicians are free to shoot their mouths off as much as they like, and a substantial proportion of those who are sick must surely realise what a pile of total pants much of the literature is - even the basics of publication bias and salami-slicing and post-hockery and failure to pre-register trials and all the rest of it should be enough for national outcry.

The major reason why we here pursue the right answer so hard is because our health and our lives depend on doing so. But this is true of other sick people - and a lot of those sick people are retired medics and scientists who have the skillset to recognise that in many cases, their treatment is based on systemically poor research conducted under a system corrupted by vested interests. I really can't understand why they're just sitting on their backsides.

 

I think it's pretty common everywhere.

Thing is, it's a job. Even people who like their jobs find aspects of them depressing: the bureaucracy, the perverse incentives, the unshiftable inertia, the promotion of eejits so they can't do any more damage. Burning vocation can be quickly cooled by reality.

So it's not surprising some of them settle for mediocrity. It's what everything's set up to produce, after all.

It's also not surprising some feel insecure in the face of criticism. Organisations don't like staff who attract the wrong sort of attention, specially if they're hierarchies where every level is giving the one below hell because they're terrified of the one above. Some universities appear to think this is a productive management system.

I expect there are plenty who can't afford the luxury of critical thinking, as well as the ones not actually capable of it.

 

I already made a similar thread here: https://www.s4me.info/threads/chall...-the-medical-profession-where-are-they.24361/

You can try your luck upon Reddit but there's no guarantee of being listened to:

https://old.reddit.com/r/doctorsUK/
https://old.reddit.com/r/Residency/

If you do find somewhere and decide to post then I'll help you out drafting a post.

https://old.reddit.com/r/skeptic/ - I've been meaning to post here but have not been well enough. Something titled as Double Standards In Medicine, Why Are Psychosomatic Explanations & Behavioural Treatments Held To A Far Lower Standard of Evidence?

Additional material:
https://www.skeptic.com/michael-she...llnesses-sleeping-beauties-suzanne-osullivan/ - Post to /r/skeptic - Double standards of evidence in medicine.
https://www.skeptic.org.uk/2022/12/...n-medical-reality-placebos-by-kathryn-t-hall/