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.

 

@Barry, ditto to @Trish. Thank you. These things should not go by without pointing out the inaccuracies.

 

As I noted above, my recounting of an adverse reaction to a drug was dismissed. This should have been a warning to me. My symptoms were frequently dismissed on several other occasions, especially regarding ME.

 

They won't notice at all. It's an excellent letter. but a good point to remember for future usage.

 

Just so that nobody misses the chance to attend:

https://philevents.org/event/show/89434?ref=email

 

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)."

 

No this is what serious philosophers spend their time on these days. The BPS people and politicians with funny hairstyles are not the only people to have lost the plot it seems.

 

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.

 

No.

 

Transcribing Garner's words.

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.

 

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.

 

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.

 

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.

 

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.