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

Jonathan Edwards said:
I wondered when the interviews were recorded and at what stage PG might have registered the comments on his blog. It almost sounds as if CG was driving the BPS message ahead and PG was cooling off.



I can think of a long list of things that are not made better by exercise.
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Yes and I wondered if it was a damage limitation exercise, trying to cool down the furor surrounding PG's BMJ piece because he came out of that really badly and they realised this so they tried to mitigate it a wee bit by getting him and Gerada on TV to make him seem not as extreme and unpleasant towards PWME and PWLC? i.e. no mention from either of them of military type exercise, limited derogatory comments about ME/CFS and online groups, much more toned down but definitely not good.

And I find it interesting that they had Gerada on too.

Could the BPS/SMC cabal have been behind helping PG to get all the media and BMJ coverage he has had over the past months?

I was astonished reading Suffolkres post 237 on this thread (page 12) with all the media coverage he has had, but maybe that is what can legitimately happen in the media in such situations with no pushing from the shadows, I don't know, but having Gerada pop up like that makes me immediately suspicious.
 
Action for M.E. CEO, Sonya Chowdhury, responds to Prof Paul Garner.

This morning, Prof Paul Garner appeared on BBC Breakfast to talk about his recovery from Long Covid. Building on his latest BMJ blog on the same topic, published on Monday, the experience he shared sadly confuses anecdote with statistical significance, and opinion with fact, causing significant distress to people with M.E. It is this that I wish to address here.
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https://www.actionforme.org.uk/news/our-ceo-responds-to-prof-paul-garner/
 
Here’s the transcript of what Clare Gerada said:

First I will just say, what a powerful and emotional piece you’ve just shown and I think it’s a testament not just to those individuals who have survived it but also to the health service that have given them the care in order for them to be able to tell their story.

So my story is nothing like that. I was one of the first to get covid in this country. I got it in early March having come back from New York and it was a pretty awful disease, there is no saying that it wasn’t. My main symptom was severe muscle pain to the point that I would have rather cut off my legs than have experienced it. And as I got better I did what many people in my position do, I thought I was superhuman and started running. I did my usual 5km and even 10km and really that’s probably the worst thing I could possibly do and it set me back. And in retrospect it has probably taken about 3-4 months to really get over that pain.

And what I did was got myself the most fabulous personal trainer who did the sensible thing of gradually increasing my exercise tolerance, gradually strengthening my muscles, gradually giving me the confidence to go back to what I think I am now, which is normal. So it does take time but the piece that you showed - of course they had multiple organ failure. This is very different from the stories that we’re hearing about long covid and theirs wasn’t long covid, theirs was recovery following as I said multiple organ failure, a serious catastrophic illness with months of intensive care.
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There is nothing that isn’t made better through exercise ok, nothing. No matter what age, what condition, exercise will always improve it - but in moderation. And because I was fit - I mean I have run marathons, I would regularly run 10K - I just thought having had this illness, let’s just go back to normal. So I tried to run and did run but it set me back - it set me back months because of course my muscles were not prepared for it. I had, I don’t know what the pathophysiology is but I certainly had problems with my muscles.

So what you have to do to those listening to it, it’s in moderation, it’s gradual recovery, as Paul said, it’s gradually “one step at a time” to use the cliche. It isn’t going from nothing to how you were before but just gradually increasing it. As I said, I got myself a personal trainer - he’s absolutely lovely, he inspires me. I noticed that your training on the BBC, just gradually increase it and don’t push yourself too much. This is not a marathon that you have to enter, this is just gentle exercise. And yes Paul’s inspiring. Try and change those thoughts around into what you can do rather than what you can’t do.
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I will do the transcript for PG’s bit in a separate post, I’m about halfway through it now.
 
Sarah94 said:
They didn't really say anything about me/cfs. Garner mentioned taking advice from somebody who had recovered from me/cfs, but that was the only mention and it wasn't implied that he had me/cfs, thankfully.
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Paul Garner
@PaulGarnerWoof
·
Jan 25
I had Long Covid & met Canadian consensus criteria for ME/CFS. I have recovered: I feel that I have looked down the barrel of the ME/CFS gun and disarmed it. I write this to my fellow longhaulers #LongCovid #MECFS #postviral #longhaulers https://tinyurl.com/y6py7hrh
 
strategist said:
I read that he was on the BBC this morning, talking about how he recovered from CFS.

Seems like the anti-ME/CFS propaganda has started.
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Can we expect an assault on NICE draft guidelines?

#DrWoof works in close proximity to Mike Beardsworth , and Trish Greenhalgh's intervention looks as if it was choreographed by Prof Sir Simon Wessely. I was concerned at our glorious #ME charities self congratulatory outpourings over recent draft guidelines. Chris Burton (see graphic ) is director of - https://www.sheffield.ac.uk/scharr/research/centres/ctru/mss3



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She did say that it was good for everything - she didn't limit it to medical matters ;)

So a little bit of moderate exercise may be all we need to repay the national debt, cure world hunger, get perishable food into the EU before it spoils, and rising sea levels, floods, people melting in the streets, all can, according to Clare Gerada be solved by moderate exercise, as all fit within 'everything' - universe full of options for things that exercise doesn't, IMO, help - but she is the 'expert' so I'm probably wrong.

Why do I feel like this is like the 70s/80s videos on how to survive a nuke?
 
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And as promised here’s the transcript of what Paul Garner’s said:

So I was extremely unwell initially. I managed myself at home - I had these 2 months of severe exhaustion and waves of illness. I saw a doctor after a couple of months. He said look I think it’s now a post viral situation that you’re in - he reassured me that my heart and lungs were ok. But then there followed another 4 months of complete exhaustion.

Like Clare I needed to avoid overdoing things because if I did the illness would echo back. But then I sort of lapsed into a period of being frightened to go out and being frightened to do anything really and rather thinking this illness would last forever. Luckily I met someone who had recovered from ME/CFS and they helped me think positively about things and gradually I’ve been recovering, pushing thoughts aside and I’m now back to what I was before, after 9 months.
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You think you’re an expert but when it actually happens to you, you’re an ordinary patient just like everybody else. And you have to sit and reflect on what’s happening to you. I think it was an extremely frightening illness but I’ve learnt a lot about my own body and about how to recover and like Clare, the importance of gentle exercise and positive thinking to take you forward out of this.

Late in the illness I was obsessing about my symptoms the whole time. And the Facebook group sometimes don’t help very much because you just keep going back to how ill you are - and the symptoms are real but you need to use techniques that move you forward positively into the new year.
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That’s all of it. I’m off for a rest now.
 
One consolation is that they are way too heavy-handed and moving too fast at once. Going to promote a N=1 anecdote after just a few weeks on national television like this takes all the subtlety of the years-long approach they took with us.

Which is interesting because although they go to serious efforts to keep the two separated, their motivation in pushing this for LC is obviously the precedent with us. Which they can't admit. The only alternative is milking individual anecdotes like this, which is dereliction of duty.

At least this will completely discredit Greenhalgh, but it also discredits the entire system of medicine. These two are supposed to be experts in medical evidence. And here they are pushing an unhinged single anecdote and jumping straight to advising people to follow this advice. It takes the whole system to have broken down to get to that point. How can anyone trust anything coming out of medicine given this? The whole point of giving medicine so much power is that it is not supposed to engage in this kind of magical thinking and BS salesmanship.

If those are the experts in medical evidence, what does it say about the rest who work in medicine? That they are so gullible they'll accept literally any morsel of evidence in favor of magical psychology.
 
There is nothing that isn’t made better through exercise ok, nothing. No matter what age, what condition, exercise will always improve it - but in moderation.
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Well, she's now disqualified herself from writing, or having any involvement with developing, the new/updated training module on ME/CFS for GPs....

This statement also clearly shows how inappropriate the (only recently removed) RCGP one was.
 
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rvallee said:
At least this will completely discredit Greenhalgh, but it also discredits the entire system of medicine. These two are supposed to be experts in medical evidence. And here they are pushing an unhinged single anecdote and jumping straight to advising people to follow this advice. It takes the whole system to have broken down to get to that point. How can anyone trust anything coming out of medicine given this? The whole point of giving medicine so much power is that it is not supposed to engage in this kind of magical thinking and BS salesmanship.
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I don't think it does discredit athe entire system of medicine. It points to the importance of following the evidence and that the experts will often crowd around the things they want not where the evidence takes them. Hence really stresses the importance of critical evaluation.

Of course those experts pushing their views here won't see it that way. They will do their best to discredit those calling for a critical evaluation as trolls (suggesting all sorts like severe abuse, death threats amd accusations of 'hit lists').
 
I feel as if Garner's blogs had been pretty consistently personal, emotional and with information that seemed pretty questionable. There were things about this that seemed odd and a bit worrying to me, but I hadn't been arguing that the BMJ should retract them, and my concern was limited because I thought it was pretty clear what they were. They were more like a diary than anything else.

eg there was this in the first blog in this thread:

Anna explained that the “busts” can be experienced as a reprint of their entire symptom complex in the acute phase. I had fatigue, headaches and tingling nerves as my main symptom, and that’s what comes back when I overdo it. For a neighbour, who pushed herself to get a contract in to secure her salary, her collapse manifested as severe abdominal pain, diarrhoea, and a sore throat: a complete re-enactment of her initial illness. I learnt that in convalescence after a severe assault, the body goes into protect mode, so if it isn’t getting space to recover, it shuts you down by bringing an embodied memory of the illness.
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There are things about his most recent blog that are more of a problem than others, and they will particularly stand out to those whose lives have been made worse by the problems around PACE/FINE/etc, but I want to keep my response to this in proportion to my response to his other blogs, some of which were praised by a lot of other patients. I know that a lot of people here have been consistently critical of the way anecdotes are often over-promoted, but would people be equally condemning of the BMJ for publishing Garner if his new anecdote driven blog was about how he'd been harmed by doctors putting a positive spin on GET and now (for some reason) thinks he will never recover? I think that we'd be raising concern that he really should not assume that he won't recover, but I doubt there'd be much outrage.

We're in a difficult situation as personal stories seem to influence people more than, for example, explaining problems with the way academic papers have presented their data. Personal stories are so often shaped by the individual's hunches and post-hoc rationalisations, and those that are promoted will tend to be those coming from the dominant culture. I just think that we need to encourage consistent caution with all personal stories, including our own.
 
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