Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

Re the PACE trial and participant's interaction with researchers: I would hazard a guess not a lot of the participants wanted to make waves by telling the therapists/researchers their "therapy" didn't work, or made them even worse. Especially after all that time invested.

When I once noted a prescription caused adverse symptoms, I was gaslighted. A negative review was very unwelcome. Years later it turned out my review was right. I was one of many with the same side effect from the drug in question. But at the time, I was "imagining" the negative effects.

It can be heavy weather to complain about therapies, drugs etc., that have the official stamp of approval.
 
Sean said:
Technically it was the difference between the arms that was not sustained. That is, neither CBT nor GET offered any advantage over APT or SMC in the long term.

And that is using their much more generous post-hoc definitions. If you use their original protocol definitions, there is not even any apparent advantage to start with.
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You are right. I was trying to squeeze my complaint into the character count and slipped up on that. Damn, I usually get that right. I was also at the stage where my eyes had stopped focusing and I was exhausted, angry and rushing to get it submitted.

Ah well, I doubt they will read it carefully enough to notice, and I think I got the date of the newsnight program wrong too, so they will probably discard my complaint. I hope others complain too. They take more notice of the volume of complaints, probably.
 
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Jonathan Edwards said:
Just so that nobody misses the chance to attend:

https://philevents.org/event/show/89434?ref=email
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Romy Jaster (Humboldt-University, Berlin)
"I am an assistant professor (wissenschaftliche Mitarbeiterin) at Humboldt-University, Berlin. I work on abilities, dispositions, and free will, but also on fake news and other breaches of norms of truth and truthfulness in the public sphere. My dissertation on abilities won the two major awards for works by young philosophers in Germany. I am strongly interested in the usefulness and the potential role of public philosophy and engage in public philosophy frequently. Since 2019, I am the managing director of the German Society for Analytic Philosophy (GAP)."
 
dave30th said:
Yes, this is important. the other groups "caught up" in essence, at least in terms of how everyone answered the questionnaires. So no differences were apparent at follow-up. But that doesn't stop these investigators from then deciding that the most important outcome is that the benefits were "sustained" for their interventions--even tho as a clinical trial the results were null. Like the GETSET follow-up--null results but they reported a success because of "within-group" results. it is hucksterism.
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Is it valid to say that benefits were sustained when the comparison group catches up. I would have thought a claim that they were sustained would mean that the difference was retained?
 
Adrian said:
Reading between the lines what I guess he is saying is research into GET and LP shouldn't be shut down (hence the comment on recovery).
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My reading of it was that "those who believe it is permanent, don't want to get well" - it's back to the nihilism argument again. But I think that's simply used as a distraction. The majority of those watching won't know about the psychosocial treatments and think that refers to any research.
 
Transcribing Garner's words.

36:10
"I really think we need narratives from people that have recovered to hear the case studies like mine and other people so that we can do proper research on it, its very important that research in post viral syndromes is not shut down and its not shut down by advocacy groups that believe that the disease is permanent."
36:38
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Ostensibly the first part of this is not objectionable, I think we should all want scientific research to be done, just not the fudged blaggery which BPS brigade try to pass off in lieu of research. We want empirical research not fakery.

The implication in the last part of the sentence is objectionable as it imputes a luddite motive to Charles Shepherd in advocating that some patients with longcovid are like ME patients and find GET harmful. This (luddite idea) simply is not true and is a straw man argument.
 
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I think the first part is problematic too. He is not a case study he's an anecdote. A proper case study would have dated medical records of his symptoms and activity levels, and any changes in his activity levels and consequences, not ramblings on a blog.
 
Trish said:
I think the first part is problematic too. He is not a case study he's an anecdote. A proper case study would have dated medical records of his symptoms and activity levels, and any changes in his activity levels and consequences, not ramblings on a blog.
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I agree but feel we have to be careful about that since his reference to his own narrative alludes clumsily to the lived experience argument, which is part of the current trend in public debate that we need to take heed of accounts of lived experience and not dismiss them.

If we want our stories to be heard I feel it is fair enough to allow that his story is no less relevant than ours as a lived experience, its just not the same as ours, which is what he seems to be unable to accept.
 
The problem is, his prominence means his story is being treated by some, including the BBC, as more relevant than ours.

I would argue also that individual case studies tell us nothing of scientific significance or relevance to other patients in cases of patients in the first year or 2 of any post viral fatigue condition where there is a high probability of natural recovery regardless of treatment.

I think case studies are only useful if the condition being treated has a well established prognosis so any deviation from this in the outcome of a series of cases may point to a useful direction for clinical trials.
 
Individual stories are different in quality from any other reporting using science methods.

Any given story can and will be full of factual inaccuracies. The truth lies in the honest telling of external facts that can be validated (I had a virus at such and such time etc). How people respond to the things that happen to them / how they interpret these things for their own needs emotionally and psychologically are not facts and they cannot be validated as such.

We can accept a story as how a specific person related to what they experienced but it does not in any way inform anyone of anything. It merely provides an opportunity to show compassion and offer assistance. As well as creating a space to understand human suffering in all of its variations.

But again, a story is in no way informative of any concrete science fact IMO. And cannot be used as such. Even a case study (which I think can be useful as a starting point for observation when there is nothing else) when interpreted will not yield science again, IMO.
 
It may not be 'science' but this sort of approach is, and has been, very successful in stopping science.

Why would anyone research something that it is commonly agreed, apart from by a few outsiders, either doesn't exist, or already has solutions, or both.

Very profitable solutions I would imagine - or they wouldn't be so tenacious.

What possible reason could there be to do so?

Opinion may not be science, but it's perfectly capable of blocking it.
 
Adrian said:
Is it valid to say that benefits were sustained when the comparison group catches up.
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If you define the important comparison as the "within-group" one, then I guess it makes sense to say the "benefits" were sustained. But of course it's conflating the general meaning of 'benefits" and what is meant in a clinical trial, which is "benefits over the comparison group." So it's using language in a colloquial way to misconvey the scientific findings.
 
boolybooly said:
If we want our stories to be heard I feel it is fair enough to allow that his story is no less relevant than ours as a lived experience, its just not the same as ours, which is what he seems to be unable to accept.
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But his story is not just a lived experience.

His lived experience was that he was ill for ages after Covid and then got better.
His story is that he was ill for ages after Covid and got better once he started to think positively.

"Lived experience' is always introduced as a bogus argument. All experience is lived. All science is based on experience (the French word for experiment). What people mean by lived experience is uncontrolled observation.

What they mean by lived experience being 'relevant' or 'not dismissed' is that we should allow ourselves to draw causal conclusions from uncontrolled observations.

That is simply wrong. Causation can only ever be inferred from controlled comparisons.
 
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