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

Jonathan Edwards said:
Robert keeps telling me that I should write that book.
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I was thinking about that book this afternoon, trying to remember when you were giving that immunology talk that you wanted to get out of the way first, wondering when I was due to start cajoling you again. I’ll put it in my diary for May 1, if I don’t hear from you before then.
 
strategist said:
My own explanation for Garner's behaviour:

Identifying with ME threatened his friendships and self-image. The illness was also terrifying. When it passed after a few months, he created a new narrative that fit his old identity and the belief system of his old social circle. In this new narrative, he is no terrified patient that has lost control of his life, but someone who looked down the barrel of the gun and disarmed it.

The illness was an experience so at odds with his self-image that he had to rewrite history afterwards.

Someone with his training should have no difficulty understanding the problems with extrapolating from n=1 stories or the high chance of recovery in most postviral syndromes. That he is blind to this in public reveals a bias.
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I think that explanations like that can also fit alongside the simplistic model I posted, making it a bit less simplistic. I'm sure there's a lot more going on in terms of personal relationships and interactions that we will have no idea about. People's stories and motivations are always really difficult for anyone to truly understand.
 
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Trish said:
This is so depressing. I think of all the friends, families, carers, clinicians - watching and believing, and feeling justified in gaslighting us.

And above all I think of all of us, and those with long Covid (who are not among the lucky ones like Garner who was recovering anyway) for whom exercise will cause harm.

I feel like weeping for us all.

I feel too old and sick to go on fighting this crap.
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It's definitely showing that BPS beliefs are the near universal norm, far from being fringe. There are more visible people pushing for this, their career is tied to being perceived as right, but their beliefs are very widespread.

I'm not feeling good about our odds. It's become pretty clear to me that without Long Covid we were never going anywhere, it's entrenched too deep. But even with it, the overall reaction is one of a system that has completely given up trying and can't bring back any of that energy or curiosity, just going through the motions because they are familiar. Simple but wrong solutions to complex problems... every-damn-one falls for them.
 
Those who say ME is short lived and not serious are gaslighting sufferers. Even support groups who do this. For years the message that ME was easily overcome made me question myself. What was wrong with me that I could not recover?

The lame, useless name "Chronic Fatigue Syndrome" also contributes to gaslighting ME victims. Some, and indeed probably many physicians report patients' recovery from this illness. Given the vague name, and vague case definitions, one cannot really blame them for incorrectly diagnosing all manner of ailments as CFS. When some of these patients recover, their improved health is held up as proof that pwCFS recover. Further gaslighting patients who actually have ME.
 
rvallee said:
It's definitely showing that BPS beliefs are the near universal norm, far from being fringe. There are more visible people pushing for this, their career is tied to being perceived as right, but their beliefs are very widespread.

I'm not feeling good about our odds. It's become pretty clear to me that without Long Covid we were never going anywhere, it's entrenched too deep. But even with it, the overall reaction is one of a system that has completely given up trying and can't bring back any of that energy or curiosity, just going through the motions because they are familiar. Simple but wrong solutions to complex problems... every-damn-one falls for them.
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Deeply entrenched yes. Thousands of years of blaming the "possessed" victim. Easier to blame, and other, than pull up one's socks, and get to the real work of finding the biomedical cause, treatments and cure. Much easier to scapegoat and malign. The easy way out for systems, and individuals.
 
Andy said:
I can understand why you feel that way but I'd encourage you to contrast this with all of the progress that has been made in recent years. No, the progress isn't sufficient and we will need to keep pushing forward, but when the NICE draft guideline is almost better than we could have realistically hoped for, our charities working in a more coordinated way, the Priority Setting Partnership due to start, DecodeME set to open recruitment later this year, and add to that the huge spotlight that Long Covid is shining on post-infectious illness, then, even though Paul Garner's witterings are intensely annoying, I think we have cause for genuine optimism. We will undoubtedly suffer setbacks along the way, but I believe that we now have genuine forward momentum.
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And I also believe we in S4ME can feel proud we must have played a non-trivial part in much of that progress.
 
DokaGirl said:
Some, and indeed probably many physicians report patients' recovery from this illness. Given the vague name, and vague case definitions, one cannot really blame them for incorrectly diagnosing all manner of ailments as CFS. When some of these patients recover, their improved health is held up as proof that pwCFS recover. Further gaslighting patients who actually have ME.
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Additionally, some physicians may consider patients recovered if they stop coming back to seek treatment whereas it's just that they are still ill and nothing can be done - or, worse, are avoiding harmful pseudo-treatments. If you don't keep coming back, you're usually assumed recovered.
 
I just saw that Wessely's old mate thought that Deb Cohen did a good job of providing a balanced view of this controversy:



Reminded me of Wessely's old tweet on Marchant:



It's good to have reasonable people like this tell us when a piece is fairly balanced.
 
Ariel said:
Additionally, some physicians may consider patients recovered if they stop coming back to seek treatment whereas it's just that they are still ill and nothing can be done - or, worse, are avoiding harmful pseudo-treatments. If you don't keep coming back, you're usually assumed recovered.
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Exactly, @Aerial. I think this is especially true where alternative physicians are concerned. Their treatments are often expensive, and dare I say, may not work. If people disappear from the doc's roster, they may be counted as cured.
 
lunarainbows said:
I was just thinking earlier. Why is it that Paul Garner feels the need to do this? Is he thinking, even for a second, of the people who have severe and very severe ME who are confined to their beds or are less able or unable to eat, or sit up, or are paralysed, because of exercise? Does he realise that every time he says these kinds of words, their friends and family and doctors are going to see it, and treat them worse or deny them the proper care and instead neglect them, like doctors tend to do? Does he think each of them are imagining their symptoms too? and it can be made better by thinking positively? Really? It is so cruel.

Before, it was just sharpe and Wessely, but now he is an influential patient researcher, and the BPS people suddenly have an amazing asset. He’s hurting so many people, and genuinely not even helping anyone, because those who would’ve got better would’ve anyway. I don’t understand his motivation, when just a few months ago he was saying how the ME community were marginalised. Just because he got better? I just know the BBC is going to do more of this in the next few months..The BBC too are exhibiting a special kind of cruelty. Already we have so little, already so marginalised and neglected, and it’s just like “kicking someone when they are down”.
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No, he's thinking of his career
 
rvallee said:
It's definitely showing that BPS beliefs are the near universal norm, far from being fringe. There are more visible people pushing for this, their career is tied to being perceived as right, but their beliefs are very widespread.

I'm not feeling good about our odds. It's become pretty clear to me that without Long Covid we were never going anywhere, it's entrenched too deep. But even with it, the overall reaction is one of a system that has completely given up trying and can't bring back any of that energy or curiosity, just going through the motions because they are familiar. Simple but wrong solutions to complex problems... every-damn-one falls for them.
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What baffles me is that covid in itself is indeed something new and what we know about its sequelae is still relatively limited, yet these people (it's not particularly Garner I'm talking about here) already seem to know post-covid syndrome is psychosomatic, before a decent amount of research. This attitude should raise some red flags in the public eye but again, I tend to be ever hopeful.
 
Sly Saint said:
many tried with the last piece the BBC ran with Garner and Gerada.
Clearly made no difference, except maybe this time they allowed CS to comment, although as others have pointed out, his interview might have been edited.


It's becoming quite obvious, particularly in recent months, that the whole country is being gaslighted.
(not sure if that's grammatically correct?) and we are being swept away in this tsunami of 'mental health' propaganda.
I'm not dissing those with genuine mental health issues, but how many people are being persuaded that they need 'help' (when in fact they are just reacting 'normally' to the current situation), which may actually result in them becoming mentally ill as a consequence; or, as has been happening for a while, having physical symptoms dismissed and not being correctly diagnosed.
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Anyone know if there's a transcript of the Newsnight interview? I can re-listen and note the extracts but a transcript might be easier. Thanks.
 
rvallee said:
I'm not feeling good about our odds. It's become pretty clear to me that without Long Covid we were never going anywhere, it's entrenched too deep. But even with it, the overall reaction is one of a system that has completely given up trying and can't bring back any of that energy or curiosity, just going through the motions because they are familiar. Simple but wrong solutions to complex problems... every-damn-one falls for them.
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BPSers are masters of circular reason and there was always the danger for long covid sufferers that they'd be stigmatised & marginalised in the same way as ME patients.

If that fails then the obvious option is to just go ahead and stigmatise long covid sufferers and then use them to keep ME patients in their place.
 
Sly Saint said:
many tried with the last piece the BBC ran with Garner and Gerada.
Clearly made no difference, except maybe this time they allowed CS to comment, although as others have pointed out, his interview might have been edited.
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My complaint about the BBC Breakfast interview is ongoing. They are dragging it out far beyond the usual timeframe for responding (as predicted) but I shall persevere. There is a long way to go yet, even if my appeal against their original decision is rejected.
 
Esther12 said:
I'd say there's almost no chance that this was part of any long game to get funding for research. It doesn't sound close to plausible to me, even ignoring practical things like his age. It looks like it has been a really long time since he was involved in running an RCT, and he's been involved in different things since then.
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You're probably right. He's certainly very quick to cash in though.

We've already looked on in bemusement at his very public and emotive reactions during his "recovery". In hindsight it does look like setting the scene.

" Recovery" is in quotes because I'm not sure what the appropriate definition might be. [Only partly sarcasm]
 
I do know, as someone who used to lift moderately heavy things, and who has seen kettlebells in use, by people who knew more about how to use them than simply how to pick one up, that PG had probably never picked one up before, or watched a single video on how to use them, let alone used them in training.

The whole first part of the interview, in the garden, with the kettlebell, was IMO completely staged for effect.

ETA - the whole cycling slowly around a park for 20 minutes and increasing it also doesn't ring true to me. If he'd of said walking then I could understand, but cycling, which requires balance, and constant effort not to fall off, keep the speed high enough for stability etc. (so no way of resting once he started) etc.

Again - doesn't ring true to me. Contrived.

Not saying he didn't do it, although it would be a 'poor' choice of exercise if he was as ill as claimed, just that virtually anyone who knew anything about, anything, would no more have suggested cycling as a first approach than skiing.

At least for me, one of the first things to get disrupted during a 'flare' is balance, and reaction speed - I can still move if it's not too bad but not on something like a bike - I wouldn't even attempt it - and haven't for close on 30 years.
 
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Robert 1973 said:
I was thinking about that book this afternoon, trying to remember when you were giving that immunology talk that you wanted to get out of the way first, wondering when I was due to start cajoling you again. I’ll put it in my diary for May 1, if I don’t hear from you before then.
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Talking of books, as I am sitting looking at -Science, Politics,.....and ME'. (Ian Gibson & Elaine Sherrifs. 2017)I'm thinking JE this would be a good place to start?
RIP Ian G; sad news but at least you tried.......

I went to the original constituency meeting with Ian K and J, to start the ball rolling for the Parliamentary Inquiry and report summer 2005.

*Press Release*
*Parliamentary Inquiry into Myalgic Encephalomyelitis Urgently Needed
says Ian Gibson MP*
1 August 2005
Dr Ian Gibson, senior scientist and MP for Norwich North, is working
towards the establishment of a broad-ranging independent inquiry into
the causes of Myalgic Encephalomyelitis and treatment of patients. Dr
Gibson met with Professor Malcolm Hooper, Emeritus Professor of
Medicinal Chemistry, in Norwich on July 28th to discuss the seriousness
of the situation facing ME sufferers.



I taped the meeting at the time and still have it somewhere.......

My overriding feeling after that meeting was that it was apparent that Ian knew not what we was embarking on and just how intransigent and deep seated the problems were.
With his so typical enthusiasm, get up and go, he believed he could make a difference .... it could be sorted.

What he learnt along the way is history and still defies belief; but he never gave up and never wavered from at least trying, bless him.... so RIP.
Fighting the ME crap (a word frequently appearing in this thread!) must have taken its toll.
It certainly has on me.... and I echo Trish's comment.
 
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