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

Wonko said:
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.
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The problem is not just that their opinions hold sway but that they have been successful at confabulating their opinion with science.

My point was that stories must be seen for what they are not for what they are not. And the point must be continually made as the BPS continue to be disingenuous and rather careless with facts and any allegiance to truth.
 
dave30th said:
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.
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It isn't really even using the lay sense of benefit - which means an improvement attributable to...

Whether the improvements are attributable to anything is the question in hand.
 
Interesting to claim that because pwME say we don't recover, ie. ME is permanent, we don't want research. Very interesting indeed.;)

We have been funding our own research, and asking for biomedical research for decades.

What we don't want is research that says it's our fault we're sick. Medicine used to say that about people with asthma, some forms of arthritis, and other illnesses. Those speculations, the idea that thoughts caused illness, were proved wrong.
 
Jonathan Edwards said:
It isn't really even using the lay sense of benefit - which means an improvement attributable to...

Whether the improvements are attributable to anything is the question in hand.
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True. they're using the term as a carry-over from the supposed "benefits" over SMC found at 12 weeks. So since the term at 12 weeks meant "benefits over SMC" it would be untrue to say those same "benefits" are sustained, since they're not. I've been planning to write to the editor, given his professed concern about bias in subjective outcomes when there is no blinding. I guess the journal makes exceptions for people on its advisory board.
 
dave30th said:
True. they're using the term as a carry-over from the supposed "benefits" over SMC found at 12 weeks. So since the term at 12 weeks meant "benefits over SMC" it would be untrue to say those same "benefits" are sustained, since they're not. I've been planning to write to the editor, given his professed concern about bias in subjective outcomes when there is no blinding. I guess the journal makes exceptions for people on its advisory board.
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Not much to write home about when what has been sustained is ... nothing.
 
Jonathan Edwards said:
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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Mais oui. Lived experience, though not an empirical method, has in recent times been used to convey the idea that what people experience and how it makes them feel is something other people should consider when trying to arrive at justice. I think that is the right approach in politics and media and its what we PWME need from the rest of the world, respect and recognition for our story.

In relation to the scientific method, uncontrolled observation is not only valid, it is essential as a first step and basis for hypothesis generation, science cannot exist without it, it does not supplant the scientific method but is its foundation.

In that context an experimentor would take into account Garners story and our stories and discard neither and instead consider an hypothesis which could account for both.

What that hypothesis might be I will leave to your imagination.:laugh:
 
boolybooly said:
In that context an experimentor would take into account Garners story and our stories and discard neither and instead consider an hypothesis which could account for both.

What that hypothesis might be I will leave to your imagination.:laugh:
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:laugh:

Interesting that they weigh the anecdotal evidence of a medical professional - even one who has appeared somewhat less than objective to the point of hysteria - over patients who aren't medics.

Not only that they cheerfully ignore the lived experience of the vast majority, many too ill to be heard beyond the odd patient survey, over a small minority.
 
FMMM1 said:
Here's a first attempt at a complaint re BBC2 Newsnight program -hope there isn't a limit on the amount of text!


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2nd. attempt (2000 characters):

"I wish to complain about the report on Long covid & ME/CFS - BBC2 Newsnight - 9th April.

Reference to 2005 [PACE] study i.e. on whether graded exercise therapy [GET] plus psychological support [CBT] were effective in treating ME/CFS. When the study protocol, and available objective (actometer) data, were released it turned out that someone, ill enough to be on the waiting list for a lung transplant, would meet the criteria to be deemed “recovered” [https://journals.sagepub.com/doi/10.1177/1359105317703785].

The 2005 study and others into exercise, and psychological interventions, are unblinded and rely on subjective outcome indicators i.e. questionnaires rather than objective indicators (actometers). NICE has rated them all as low or very low quality.

“87% of Doctors supporting the use of intensifying exercise programs [GET?] and 90 percent backing support for psychological programs [CBT?]”. GPs valuing “referring” patients elsewhere for “treatment” - vested interest. As per the NICE review, there is no evidence these interventions work.

Deborah Cohen worked for the BMJ, which represents GPs, someone with close ties to the BMJ should not have been chosen to investigate these issues.

“treatments that are tailored to those individuals” --- “extensive clinical evaluation” --- objective evidence (e.g. actometer data)?

Contrary to the statements in the program, patients support good quality research e.g. the recently announced genetic (GWAS) study
https://www.nihr.ac.uk/news/largest-genetic-study-into-myalgic-encephalomyelitis-is-launched/25098


The real story here is the wider crisis in science i.e. unreliable research; how best to support people with a poorly understood disease [Long covid & ME/CFS]; vested interests supporting the status quo i.e. despite the absence of supporting evidence.


In my view the program fell well short of the standards I would expect from the BBC. The difficult questions were not asked, in particular of Paul Garner."
 
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dreampop said:
Is this the same Paul Garner?
Psychotherapy: experience as a medical student

http://europepmc.org/backend/ptpmcrender.fcgi?accid=PMC1504610&blobtype=pdf
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People should read this imo. Amongst the pretentious narrative are a deferential belief in psychosomatic illness, a strong dilineation between the mind and body and claim the pyschotherapy has never hurt anyone along with a discussion of transference and some strange "examples" of psychosomatic illness. It's frankly bizarre.

I believe this is indeed the Paul A Garner from Liverpool. Reading it I just assumed it was him because it mentions University College Hospital at a time he was a student and UCL. It was written in 1981 and says its a junior doctor for 15 months.

There is a blurb at the bottom of the first page that seems to reference another Paul Garner, and the author describes himself as a surgical house surgeon (which I did not know he was).

However, it shows under PA Garner's research in ResearchGate, references working at Ninewells (which is on his ORCID Employment history). ResearchGate pinged some similar articles, all to the BMJ "personal papers". Only one was available but PA Garner wrote several to the bmj personal papers from 81-85.

https://www.researchgate.net/publication/304886557_Personal_View

This is definitely Paul A Garner, he was in Papa New Guinea at the same time, and even starts another paper in the same way he does this one. This account confirms he wrote the original personal paper as he describes it verbatim as a "psychology scheme" over 18-months at UCH. Naturally, the reference to transference has returned.

What struck me was how important and core this experience was to him, especially given in the context of his role now. He says he had no training in tropical disease and then quickly goes on to say...

a background in tropical diseases was less important than an ability to understand the patient and the culture. Curiously, I found myself using experiences from the psychotherapy scheme for medical students at University College Hospital, London.
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He later says it was the single most important part of his undergrad curriculum. PA Garner writes in a strikingly similar style in more frequent work when referencing Papa New Guinea.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1113759/

I think this all sheds light on why in the papers on Tropical Disease, Paul is on non-stop about evidence based medicine, but why psychotherapy and psychosomatism are a blind spot to him,

In his own words,

health professionals to ask fundamental questions about the care we provide and of our responsibility to examine evidence using scientific methods.
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Something he has not done.

Practitioners work in good faith, but if they implement practices or policies that are ineffective they waste resources and may harm people.
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Something he risked with his BBC appearance because he was too blind to the lack of scientific method in his own anecdote.
 
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I find it strange he left out his deep belief in psychosomatic illness and his own publication from his BMJ blog, given how his psychology scheme left the biggest impact of his undergrad education.

. I was asked, “are you open to the idea that you can have an impact on your symptoms with your conscious mind?” I thought back to an earlier experience in my 30s with being able regulate my tinnitus after quinine, and said yes, straight away.
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Maybe I should give a brief account of psychotherapy: my experience as a medical student.

I did my psychiatry attachment in Oxford. I was asked if I wanted to treat a patient with psychotherapy. I thought I should try. I was given no advice on what to do or what the evidence was for doing this rather than that.

I did one session. As it progressed I felt an increasing sense that I had no idea what I was doing or why and that as a student I had no business to be there. Then thinking of the patient as someone like me I wondered what I would think of being allocated to a student who knew nothing for my treatment.

By the next day I could see very clearly that the role thing was a fraud and an insult to patients. I decided not to do any further sessions. The patient seemed to agree.

Apart from that my only real experience of psychotherapy relates to two families I know socially. The first was destroyed completely by the process, with members scattering apart and two eventual suicides. The second led to estrangement that caused untold misery for other members of the family with no final reconciliation.
 
dreampop said:
Is this the same Paul Garner?
Psychotherapy: experience as a medical student

http://europepmc.org/backend/ptpmcrender.fcgi?accid=PMC1504610&blobtype=pdf
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looks like it helped him work through issues he had himself:
Naturally, we had difficult patches. For weeks he said the
same things about his depression, how he thought it was caused.
I was tearing my hair in the supervision group. It became
evident that this was his way of staying on safe ground, avoiding
deeper conflicts. Even pointing this out to him, I felt we were
still not moving.

I missed two supervision sessions. The
psychiatrist immediately became concerned and I returned. I
stated that little new had happened, so little that I had not
recorded anything-but I recalled as best I could. It was a
startling revelation. A lot had happened. He had mentioned his
mother for the first time in therapy, and talked about her
depression.
My own mother had suffered with depression, and
hence my "session repression." The group turned into a supportive
network where I could work through my feelings, helpful
to me, and helpful in removing the therapeutic block.
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