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Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.
Esther12
Senior Member (Voting Rights)
I take your point but alos think that to many people their roles as 'influential people' are a bit confused when they're just reporting their 'lived experience' (as Gerada emphasises).
Would most people think that Garner was punching - up or down? Is it innately worse to imply that you improved your health by being positive rather than, for example, that your health was made worse by GET?
Esther12
Senior Member (Voting Rights)
One other thing re Garner - as people keep noting, it's an N=1 personal story. It shouldn't matter than much. Why draw attention to it as if it's an important thing?
It was only likely to be important because Garner is well connected to other influential figures in EBM, and hopefully the more reasonable ones of them would realise the limited value of his personal story. Do people think that those who know Garner personally are going to be left feeling more sympathetic to the concerns of ME 'activists' after seeing the response to Garner's blog?
What does that mean? If you're implying that he deserves every one of the unpleasant tweets that has been sent to him then I think that's a far worse thing to say than anything Garner has said.
It was only likely to be important because Garner is well connected to other influential figures in EBM, and hopefully the more reasonable ones of them would realise the limited value of his personal story. Do people think that those who know Garner personally are going to be left feeling more sympathetic to the concerns of ME 'activists' after seeing the response to Garner's blog?
What does that mean? If you're implying that he deserves every one of the unpleasant tweets that has been sent to him then I think that's a far worse thing to say than anything Garner has said.
Esther12
Senior Member (Voting Rights)
Sorry - Evidence Based Medicine. It can be seen as an 'ideal/philosophy' underpinning an approach to medicine, it can still function as a label for a particular interconnected group of doctors/researchers but as it has gained influence it can almost be synonymous for 'mainstream western medicine'.
I think there is a crucial difference between saying you got better as a result of doing something and you got worse as a result of doing something. In both cases, you can't know whether it was the action that made you better or worse, or natural fluctuation, coincidence and bad or good luck. But the effect is different.
There is plenty of clincial trial evidence that GET is not effective as a treatment for ME. There is also lots of clinical trial evidence that positive thinking makes no difference to physical diseases including ME and cancer.
So in this case, neither treatment is effective. Therefore an anecdote it just that - an anecdote.
But the difference, as far as I'm concerned, is that an anecdote that describes getting significantly worse following GET is told as a warning that this may happen to others too. It provides useful information that may prompt others offered that treatment to learn more before doing it, and make an informed decision.
Whereas an anecdote claiming recovery is caused by positive thinking, and/or GET, is both a recommendation to try something (that has been shown to have no efficacy and may do harm) and a judgement on others who try it and fail to recover. Because it involves effort, and effort that is deemed in some cultures to be virtuous. it implies a sense of superiority.
Just using the image of staring down the barrel of a gun and disarming it with the power of thought is so completely inapproprate. It is clearly intended to imply superiority of character. That is so insulting to those of us who have been unable to prevent themselves getting ME. And when published in a medical journal it is completely irresponsible.
Also Garner didn't just tell an anecdote, he gave a pseudoscientific pile of mumbo jumbo in explanation. And he's supposed to be a leader in evidence based medicine.
I haven't been following the discussion on Twitter. As has been said many times before, anyone on Twitter should know that there will be trolls, unhappy people, sick people, angry people, people unable to express themselves in the most felicitous way. It's not a venue for uninterrupted sober and coherent discussion.
If any doctor blames the ME patient community for the actions of a few rogue or unhappy people, that is their problem. We can't take the blame for the actions of unknown others. I think it's pointless to take this as something for us to worry about.
I think the responses on the Paul Garner article are, by contrast, mostly coherent, polite and make worthwhile points. If Garner, Gerada, Greenhalgh and other doctors choose to ignore those comments, that's a pity.
Mij
Senior Member (Voting Rights)
Again, I don't know what was written on twitter, but when pwME have been harmed, dismissed and gaslighted for decades, then that's the frustration playing out. As a HEALTH care professional, he should at least try to enlightened himself regarding the history of ME (particularly in the UK) or shut it.
Jonathan Edwards
Senior Member (Voting Rights)
I am puzzled that you are tone deaf to this one @Esther12.
When I read Garner's last blog I thought it was appalling, as evident from my response.
It was not what he said had happened. It was the inuendo, or at least apparent inuendo (for which there was no excuse).
Basically it was the bit about listening ti people who had got better and not those who were still ill, in the context. No doctor should be saying that sort of thing in the BMJ.
I don't know what other academics might think. No doubt the BPS groupies will continue to group. But if I had seen this as someone with no interest in ME or Covid (as was the case seven years ago) I think my response would have been 'Good God what a complete clown to string together this interpretation of events. And rude with it.'
When I read Garner's last blog I thought it was appalling, as evident from my response.
It was not what he said had happened. It was the inuendo, or at least apparent inuendo (for which there was no excuse).
Basically it was the bit about listening ti people who had got better and not those who were still ill, in the context. No doctor should be saying that sort of thing in the BMJ.
I don't know what other academics might think. No doubt the BPS groupies will continue to group. But if I had seen this as someone with no interest in ME or Covid (as was the case seven years ago) I think my response would have been 'Good God what a complete clown to string together this interpretation of events. And rude with it.'
Esther12
Senior Member (Voting Rights)
There seem to be a lot of assumptions in there that are not widely held by those with power in EBM, and over us:
That the evidence is settled/clear and shows that GET is not effective.
That the evidence is settled/clear and shows that positive thinking makes no difference to physical diseases including ME and cancer.
That the evidence is settled/clear and shows that ME is a 'physical' disease (we all know how convoluted that one can get).
That we do not yet have good evidence to show that GET is safe (though I think this is a more widely held view).
That an anecdote claiming recovery is caused by positive thinking, and/or GET is a judgement on others who try it and fail to recover.
If I understood you, I think that last one is a real problem actually. Doesn't that mean you'd think that that any patient who believes that they recovered via GET or positive thinking is innately insulting those patients who try and fail to recover when they tell their story? That seems really unreasonable to me. It sounds like something Vogt would claim patients believe and that I'd think was a smear. We don't know what ME/CFS is, or that those given the diagnosis all have the same issues. It's easy to see how people could believe that positive thinking and GET helped (or harmed) them when it did not, but it's also possible that some people were helped to recover with GET or positive thinking, and that shouldn't reflect poorly on those who do not recover.
In practical terms, it's very often our problem, and we're the ones who pay the price for it.
I don't know about the other two, but with Gerada, does anyone expect her to listen? My assumption is that she's saying things that are intended to seem reasonable to those with power (whose judgements really matter) but are also likely to rile up patients and encourage responses that will seem unreasonable and help discredit ME 'activists'. It could be that, if Garner got outside advice on his blog, that some of the suggested tone and implications were hoped to have a similar affect. And in response, some people have behaved in exactly the right way to strengthen Wessely etc, and harm patients.
edit: It's a common political trick to say something that the majority will see as inoffensive, but that your opponents will take umbrage with in the hope that any over-reaction will make your opponents seem unreasonable and censorious, thus increasing your own popular support.
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One of the first things I did when my daughter became ill was to find accounts of people who had recovered. There seemed to be a huge variety of stories and nothing obvious to folllow that I could match with biomedical understanding.
I remember Ron Davis, several years ago also asking for people who had recovered to get in touch with him, so he could see if there was a pattern. I believe that someone of a similar age to Whitney had become ill at around the same time in a nearby lab, but had recovered.
I remember Ron Davis, several years ago also asking for people who had recovered to get in touch with him, so he could see if there was a pattern. I believe that someone of a similar age to Whitney had become ill at around the same time in a nearby lab, but had recovered.
Snowdrop
Senior Member (Voting Rights)
There is an analogue to the statement @Esther makes regarding pwME being not so nice to PG. Unfortunately it comes from a black woman talking about why black people are angry enough to burn things down (and therefore may not be appropriate because of the politics rule).
But essentially she says that every time black people built something it was torn down by white people (specifically referring to I think, Tulsa Oklahoma).
Honestly, I see parallels here. There are pwME in extreme circumstances. Some live on the margins economically, socially, isolated and marginalised. Some are carers for very sick children. Some are adults who became sick as children and missed so much. And so much else. On balance yes it is better to be civil. IMO there are moments when this doesn't apply.
PG is someone of privilege who is also a high profile epidemiologist who has been absolutely vile to a vulnerable community. People are hurt again and again by this group. A civil response may be more civil but it would not be equal to the real cruelty being meted out by in this instance PG et al.
The question is will pwME loose by getting angry? Is there more to gain by being civil? I'm not sure anyone has a definitive answer to that. But I think the anger (if perhaps sometimes poorly expressed) is justified. And I suppose does PG deserve always only civility in response to anything he says no matter how vile?
His personal experience was not just a factual account but highly charged emotionally (eg. looking down the barrel of a gun). And if one argues that he had a bizarre experience he has shown little grace in the face of it and no apology. And he was in Granada scuba-diving apparently which seems a contradiction as well.
But essentially she says that every time black people built something it was torn down by white people (specifically referring to I think, Tulsa Oklahoma).
Honestly, I see parallels here. There are pwME in extreme circumstances. Some live on the margins economically, socially, isolated and marginalised. Some are carers for very sick children. Some are adults who became sick as children and missed so much. And so much else. On balance yes it is better to be civil. IMO there are moments when this doesn't apply.
PG is someone of privilege who is also a high profile epidemiologist who has been absolutely vile to a vulnerable community. People are hurt again and again by this group. A civil response may be more civil but it would not be equal to the real cruelty being meted out by in this instance PG et al.
The question is will pwME loose by getting angry? Is there more to gain by being civil? I'm not sure anyone has a definitive answer to that. But I think the anger (if perhaps sometimes poorly expressed) is justified. And I suppose does PG deserve always only civility in response to anything he says no matter how vile?
His personal experience was not just a factual account but highly charged emotionally (eg. looking down the barrel of a gun). And if one argues that he had a bizarre experience he has shown little grace in the face of it and no apology. And he was in Granada scuba-diving apparently which seems a contradiction as well.
I also believe that people with ME consistently downplay their level of disability.
When I was helping a friend with her PIP application, I had to keep asking/reminding her whether she could do the activities they ask about. She was so used to adapting her ways, to manage as much as she could, that she needed prompting to acknowledge her difficulties.
I would consider that she is borderline severe. She can only get out if taken by family or friend in car or wheelchair and spends more time horizontal in bed than upright, nearly always with raised legs. Her cognitive function is also severely impaired and she has really bad pain nearly all the time.
If asked, she would describe herself as moderate. I realise there are many factors in preferring that "label".
When I was helping a friend with her PIP application, I had to keep asking/reminding her whether she could do the activities they ask about. She was so used to adapting her ways, to manage as much as she could, that she needed prompting to acknowledge her difficulties.
I would consider that she is borderline severe. She can only get out if taken by family or friend in car or wheelchair and spends more time horizontal in bed than upright, nearly always with raised legs. Her cognitive function is also severely impaired and she has really bad pain nearly all the time.
If asked, she would describe herself as moderate. I realise there are many factors in preferring that "label".
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Esther12
Senior Member (Voting Rights)
It's not that I'm deaf to the problems with tone, but I think that the way some have responded more to their interpretations of the tone, rather than just the substance, is likely to be counter-productive.
Tone can be difficult to interpret and different people can experience it in different ways depending on their own background and values. Generally we need to make progress with those whose background and values are likely to be closer to Garner's than our own.
I have my own views about the tone of Garner's blog, and I certainly think that there are reasons for concern. But I don't think it's particularly important. I think that the responses to Garner's blog are more likely to cause us problems than Garner's blog.
This is the whole thing. He cannot any longer be objective about his condition because objectivity would threaten his own recovery. It's part of the deal that he doesn't listen to those who have not recovered and the identification of post covid/ME/CFS with "that which the process addresses" means he can, or indeed must in good conscious, take the message to the uninitiated. He is no longer an objective academic or doctor, but a doctor evangelist, presenting not just a method for recovery but preaching a method which requires belief, commitment and a"faith" community of the recovered.
He may be a very nice man for all that, but his mode of recovery precludes professional objectivity.
This method may help some but it must not be allowed to "own" the term ME.
I don't know how the BMJ can handle this type of thing. They want people to get better but this stuff does not fit in with objective medicine.
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It depends very much how the anecdote is told. I'm sure I've told this anecdote somewhere here before, but I'll tell it again, since it seems apt here.
I was having lunch with friends some years ago. We all knew each other pretty well, including that one of us had recently lost her husband to cancer. Another person there, who was aware of this, told us about a friend of theirs who had recovered from cancer and went on to tell us how positive that person had been and how that helped them survive and do so well. Just imagine how the newly widowed person felt. It was being clearly implied that her husband hadn't been positive enough. I remember I had read research that showed that positive thinking has no impact on cancer survival, and said as much. I think we all felt really bad about it, including the person who had told the recovery story.
That is the sort of impact I am talking about. It is not a problem for people to tell recovery stories. What is a huge problem is people attributing their recovery from physical illnesses to positive thinking. Even if they don't mean it to, it implies a claim to a power greater than others have. And it's just plain factually wrong. For a doctor to do it without apparently realising the hurt and harm it causes is appalling.
I agree, it can be interesting to listen to the stories of those who have recovered, and it can be heartening to know that recovery is possible. But given that there is no scientific evidence supporting any attribution for the cause of the recovery, and a plethora of snake oil sellers ready to entrap us, we really need to be careful who we listen to.
Jonathan Edwards
Senior Member (Voting Rights)
Background and values are different things.
Garner and I have similar backgrounds in medical education. From that perspective what he wrote is laughable. If it produced rude comments that would be expected.
Garner and I have completely different values. He appears to have the values of someone who puts fad and self-engrossment above rational argument and other people.
I don't think you can expect to achieve anything trying to soft soap people with those values. They don't understand rational argument. They don't understand that PACE is rubbish. We have seen that.
The only people worth influencing are the people with his background but our values. I don't think they will be out off by the most lurid comments from patients. Doctors are used to patients letting off steam. The idea that ME patients are specially horrible is after all a fiction manufactured by the BPS people.
I remember a phrase from Wessely - something like 'I realise I could have handled some things better'. I strongly suspect the reason why we are hearing rather little from Wessely himself is that he learnt that lesson. If you believe an illness is all in the mind (while pretending not) and can be cred by positive thinking then you don't go around complaining about the patients. The rational thing to do is to recognise that it being all in their minds they are likely to come out with all sorts of complaints when you say it is. (sic)
In other words, Wessely realised that if he was right he had completely screwed up the way to handle things. He was wrong but that is beside the point. Garner is making the same mistake, or at least falling in line with those who do. Vogt has been doing it all along - in spades.
Even most of my old BPSish colleagues I think would see Garner's blog as an irritating nonsense.
Kitty
Senior Member (Voting Rights)
Sure, but he wasn't just doing this. He's a scientist, talking scientific mumbo jumbo; specifically, a scientist with a professional interest in evidence, failing to look at any evidence.
He criticised sick people who tried really hard, sometimes to their own detriment, to help him.
It's innately worse to raise the profile of, and ascribe your recovery to, an intervention which is accepted as being at best ineffective and at worst likely to harm people with post-viral illnesses.
Especially when you know that the people who have suffered the most harm have spent decades fighting against the powerful vested interests who ensured it was kept in place; are still at a critical point in the process of enacting change; and that your claims will give a new platform to those vested interests.
boolybooly
Senior Member (Voting Rights)
This is a unique situation though isnt it? Correct me if I am wrong I am a bit hazy about this but wasnt Garner involved in Cochrane's reviews and didnt Cochrane's treatment of GET require revision after criticism as a first step towards revising NICE guidance? He has a major vested interest in the narrative he is pushing through personal anecdote.
As I understand it what he is doing deserves criticism and then some, so if that is not clear to the public then the case for criticising his blog should be made openly.
Though civilly of course, it is not a winning strategy to be abusive, I quite agree.