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

Sasha

Sasha

Senior Member (Voting Rights)
It drives me nuts that our big funding bodies are still funding open-label, subjective-measures BPS studies and that medical journals are still publishing them; that ME/CFS clinics are still following a rehabilitative model with their 'pacing up'; that concepts of 'central sensitisation' and 'effort preference' are going unchallenged in the literature; and that the voice of the patients who are on the receiving end of this life-ruining rubbish is missing.

Are there forums where patients speak and doctors and researchers listen?

And anywhere where patients can speak out about research quality?
 
Sasha said:
It drives me nuts that our big funding bodies are still funding open-label, subjective-measures BPS studies
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Are they? I'm guilty of not bothering to read most of this stuff, but is the UK still doing publicly-funded studies on BPS models of ME/CFS? I know there's endless drivel published, but it's bloody depressing if major funders are involved.

I thought (i.e., made up a story) that a lot of the output was driven by the need for academics to publish and the fact that any old bilge will do—Never mind the quality, feel the width!—rather there being a lot of public money available for it.

I could be well off track, though. Maybe I should pay more attention.
 
I get the impression that in the UK they're not really funding anything at all on MECFS (aside from decode) because they think "there is a cure already" and because of that there are next to no researchers left so you're trying to grow from a near standstill.
 
Kitty said:
I thought (i.e., made up a story) that a lot of the output was driven by the need for academics to publish and the fact that any old bilge will do—Never mind the quality, feel the width!—rather there being a lot of public money available for it.
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Definitely the “publish or perish” culture means immense amounts of worthless drivel is published.
But the UK does invest a decent amount into long COVID research, and it’s going in a large part to psychobehavioural Bs.
 
Kitty said:
Are they? I'm guilty of not bothering to read most of this stuff, but is the UK still doing publicly-funded studies on BPS models of ME/CFS?
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I think they're getting around it by funding BPS studies for MUS, FND, persistent physical symptoms etc, and including ME/CFS.
And of course there are multiple studies of exercise and rehab for Long Covid.
 
Sasha said:
It drives me nuts that our big funding bodies are still funding open-label, subjective-measures BPS studies and that medical journals are still publishing them; that ME/CFS clinics are still following a rehabilitative model with their 'pacing up'; that concepts of 'central sensitisation' and 'effort preference' are going unchallenged in the literature; and that the voice of the patients who are on the receiving end of this life-ruining rubbish is missing.

Are there forums where patients speak and doctors and researchers listen?

And anywhere where patients can speak out about research quality?
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Are they still funding them (in terms of new funding rather than old projects finishing)
 
Sasha said:
Are there forums where patients speak and doctors and researchers listen?
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Probably only this one, which I suspect is very unusual.

There ought to be similar forums for other conditions. People with rheumatoid should have a forum to ask researchers why they have made no progress in the last 25 years towards long term remission. Patients with long covid should a have a forum to ask researchers why they were so bloody stupid to start Covid-19 in the first place.

But I don't think there are.

And this forum has a huge impact, even if lots of people seem to hate it and stay away. The word spreads out. Scientists don't debate like this amongst themselves much.
 
Another important avenue we probably don't use enough is emailing researchers directly, either to point them to the discussion here, or to invite an email dialogue.

Even if most falls on deaf ears, a well argued email may make some researchers and clinicians think.

Trouble is that's incredibly labour intensive and not possible for many pwME. My largely failed efforts at letter writing have taken far longer than they would have when I was well, and taken a lot out of me.
 
Trish said:
Another important avenue we probably don't use enough is emailing researchers directly, either to point them to the discussion here, or to invite an email dialogue.
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For the researchers whose work is promising there is quite a lot of email and other exchange that members may not be aware of via me, Chris Armstrong, Chris Ponting, Jo Cambridge (who reviews a lot of the papers), Rob Wust and so on. And at least for me it is all as a result of forum interaction. I don't have any other source of input, other than when Jo alerts me to a paper.
 
Jonathan Edwards said:
There ought to be similar forums for other conditions. People with rheumatoid should have a forum to ask researchers why they have made no progress in the last 25 years towards long term remission. Patients with long covid should a have a forum to ask researchers why they were so bloody stupid to start Covid-19 in the first place.
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I've thought the same. I have pretty bad social anxiety disorder, another condition that very often has no effective treatment, and there are a couple big forums for that, but no one is posting about the ongoing research, just sharing experiences of symptoms and of trying existing treatments. I wish they were excitedly poring over every new SAD paper like what happens here. (Though only a tiny fraction of papers on SAD are about physiological markers, but still.)
 
forestglip said:
I glossed over this before. What do you mean "start Covid-19"?
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It seems almost certain that Covid-19 arose as a result of a laboratory mishap in Wuhan in a research programme funded by NIH and UK sources amongst others. Even if it didn't it became clear that the lax safety protocols at Wuhan would have allowed it to happen so the funders are just as culpable. They set up research somewhere where safety protocols were not carefully monitored. I suspect they would not have been allowed in the US or UK. The researchers were deliberately trying to create more dangerous viruses.
 
Jonathan Edwards said:
And this forum has a huge impact, even if lots of people seem to hate it and stay away. The word spreads out. Scientists don't debate like this amongst themselves much.
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I always worry that we are just talking to ourselves here. In what way do you see us as having a big impact? To whom is the word spreading?

It's a real pity that more scientists don't come here to debate their work.
 
Trish said:
Another important avenue we probably don't use enough is emailing researchers directly, either to point them to the discussion here, or to invite an email dialogue.

Even if most falls on deaf ears, a well argued email may make some researchers and clinicians think.

Trouble is that's incredibly labour intensive and not possible for many pwME. My largely failed efforts at letter writing have taken far longer than they would have when I was well, and taken a lot out of me.
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I wonder if it would make sense to have a standard email that goes out to the authors every time we start a new thread on a particular research paper. Just along the lines of, 'Dear X, Science for ME is a forum where scientists, and patients interested in (and often with a background in) science, discuss research into ME/CFS with a view to moving the field forward. Your paper has recently been posted on the forum and we'd like to invite you to join the discussion, etc. etc.'.

Maybe with a bit of a warning to expect frank and robust discussion from people who are on the receiving end of research and therefore expect the highest standards...
 
Sasha said:
I wonder if it would make sense to have a standard email that goes out to the authors every time we start a new thread on a particular research paper. Just along the lines of, 'Dear X, Science for ME is a forum where scientists, and patients interested in (and often with a background in) science, discuss research into ME/CFS with a view to moving the field forward. Your paper has recently been posted on the forum and we'd like to invite you to join the discussion, etc. etc.'.

Maybe with a bit of a warning to expect frank and robust discussion from people who are on the receiving end of research and therefore expect the highest standards...
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That seems like it might be a good idea actually. I imagine at least some will want to take a look out of curiosity, and hopefully a few will want to clear up any misconceptions or clarify anything important that we're missing.
 
Sasha said:
I always worry that we are just talking to ourselves here. In what way do you see us as having a big impact? To whom is the word spreading?
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My impression is that what is discussed here percolators through to almost everyone in evolved in ME research and also clinical strategy. I constantly hear things we have thrashed out here newly used by people who might seem to know nothing about us or to ignore us.

What goes on here gets through to pretty much all researchers, some of whom will find it unsettling and some of whom will find it useful and borrow it.

They don't chip in because it is not in their interest to do so - they exist in a dog eat dog competitive world where you do not share ideas for the sake of humankind. You have to sell things to funding bodies.

The system is nearly perfect because scientists can learn from what goes on here without having to make themselves look foolish. Or, if they can't grasp what is going on, nothing is lost.
 
Sasha said:
I wonder if it would make sense to have a standard email that goes out to the authors every time
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I would beg not. Scientists are awash with unsolicited emails trying to catch their attention. Maybe a hundred every day. I still get them because of papers I published decades ago. I am asked to join the editorial board of obstetrics journals and attend meetings in China almost every week. The people we want to inform are listening. They know what goes on here. Do not worry.
 
Jonathan Edwards said:
My impression is that what is discussed here percolators through to almost everyone in evolved in ME research and also clinical strategy. I constantly hear things we have thrashed out here newly used by people who might seem to know nothing about us or to ignore us.
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This is cheering!

The system is nearly perfect because scientists can learn from what goes on here without having to make themselves look foolish. Or, if they can't grasp what is going on, nothing is lost.
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What do you think of the idea of emailing researchers to let them know that their papers have been posted on the forum for discussion and inviting them to join in? I was thinking that, among other things, it would be a good way to communicate to BPS people doing poor trials that even patients can see that their research is terrible and that they ought to change their ways...
 
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