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

[Jonathan Edwards]

Aren't people confusing empathy with sympathy.

Empathy is the ability to understand and share the feelings of another.
Really don't understand Garner's feelings. If I had Covid and remained ill, as a physician well familiar with the concept of post viral fatigue I would feel relieved that I had survived the acute phase and, as a secondary issue, frustrated that my recovery was slow. Garner seems to have gone through all sorts of other feelings that seem ill-informed and inappropriate for a professor of medicine. l don't understand how someone like him gets into that state so I cannot empathise.

And I know of other professors of medicine with LongCovid whose feelings match those that I would expect to have had - relief and some frustration.

 

[Esther12]

It is perfectly possible to have empathy with a person for one thing but feel contemptuous about them for another.

Sure.

I think there are problems with some of the things Garner had said and done, though I largely see them as more silly and annoying things from an individual patient (though one who is well connected) than more than that. I also think a lot of them relate to problems with the some of the things some patients have said and done.

We're never going to be able to stop all people behaving badly in any way, so it's worth focussing on the behaviour we have the most control over (our own) and then advocacy aimed at challenging problems with the behaviour of those who have the greatest authority over us.

 

[Hoopoe]

I think patients have the right to object to prominently displayed

- misrepresention of their illness in medical journals
- dubious claims about the mechanism underlying the illness (classical conditioning of dysfunctional autonomic nervous system responses)
- promotion of quackery
- fantastical and one-sided recovery narratives

Garner has no one but himself to blame for the responses he received. I think I can understand why he acted like this but that doesn't make it right.

What he has done could have very serious consequences for some patients that are unfortunate to have doctors or family members that are receptive to such fantastical narratives.

 

[Invisible Woman]

Empathy is the ability to understand and share the feelings of another.

Too be honest I don't have a lot of sympathy for him - for example I have no sympathy for him if he finds himself being criticised - although I certainly wouldn't condone personal attacks & threats.

I do empathise with the utter desolation and isolation when you find your entire life is suddenly ripped out from under you with no guarantees you'll get it back. I have no doubt the guy had a very tough year of it. Although he did have a great deal of support from the ME community.

I wish he could have learned enough from his experience to empathise with those who were not fortunate enough to recover - even though many might even have tried all the same things he has.

Edit - actually I phrased that badly - I don't sympathise if he finds himself criticised for what he has said about those with ME and the treatments he espouses, plus the lack of interest in science. I have no interest in him other than in how he interacts with and affects our community.

 

[Invisible Woman]

Sure.

I think there are problems with some of the things Garner had said and done, though I largely see them as more silly and annoying things from an individual patient (though one who is well connected) than more than that. I also think a lot of them relate to problems with the some of the things some patients have said and done.

We're never going to be able to stop all people behaving badly in any way, so it's worth focussing on the behaviour we have the most control over (our own) and then advocacy aimed at challenging problems with the behaviour of those who have the greatest authority over us.

I disagree completely.

If you don't ever speak out to put the record straight then the misconceptions never change.

I wouldn't advocate rudeness, aggression, violence or threats but appeasement hasn't worked either. In fact, in the history of ME appeasement made matters worse as far as I can tell.

I'm not interested in correcting other people's behaviour but people spouting the kind of tripe that causes suffering to others - we can and should speak out about that.

 

[Hutan]

I have stopped going out this week, and maybe next week will start with 500 metres. I do little work now and stop before the brain fog sets in. I have learnt that I am OK mid-morning and later in the afternoon, and rest in between. I have stopped watching online streaming and TV, changed the playlists from trance to dreamy vibes. I am reading materials about pacing and CFS/ME and listening to the CFS/ME community. I am taken aback that doctors have been so dismissive of what these patients have been saying for so long. I talk to my sister. Her personal experience of ME really helps, and she coaches with practical management of chronic fatigue.

https://blogs.bmj.com/bmj/2020/05/19/paul-garner-covid-19-and-fatigue-a-game-of-snakes-and-ladders/

Empathy is the ability to understand and share the feelings of another.

Indeed, and as I said before, I do not understand how Paul Garner has come to hold his current views or his evangelism about sharing those views with the world. I do not share his views (ed.) or his feelings about post-infection fatigue syndromes.

I think there are problems with some of the things Garner had said and done, though I largely see them as more silly and annoying things from an individual patient (though one who is well connected) than more than that. I also think a lot of them relate to problems with the some of the things some patients have said and done.

Whatever caused Garner's change of mind about Long Covid, I don't think patients should be blamed. When Garner, in his role as Professor of Infectious Diseases instructs his students about post-infection fatigue syndromes; or when he exerts influence within Cochrane; or appears in another international tv item to talk about the importance of exercise in recovery from Long Covid, is that really just silly and annoying?

 

[Helene]

"I talk to my sister. Her personal experience of ME really helps, and she coaches with practical management of chronic fatigue."

What? His sister has personal experience with ME and he still doesn't get it?

 

[Woolie]

I think if people use their work persona as a means to promote personal opinions and ideas that have nothing to do with their work, then they should expect particularly rigorous criticism of those opinions and ideas.

Remember the Baroness Susan Greenfield? A renowned neuroscientist, did some great stuff in her time. Took to the media around 5-6 years ago to make pronouncements on the evils of modern technology, particularly internet gaming and mobile phones, and their consequences for young people's "brains". She used her fame in neuroscience to promote a crackpot idea well outside of her remit, about which she had little more than strong emotions.

Hilarious guide to Greenfieldisms here: https://www.theguardian.com/science/brain-flapping/2013/apr/09/susan-greenfield-article-how-to-guide

Do I have empathy for Greenfield? Actually, yes, a bit. The backlash was probably devastating and humiliating. Do I think the backlash was justified? Totally. She was weaponising her fame to promote harmful, unfounded ideas. It needed to be called out.

 

[Hutan]

"It's really horrible. I've now been unwell for three months. I have enormous fatigue. On Monday I walked 5km and the next day I couldn't get out of bed.
If I do too much it floors me. It's viral fatique. I don't know how long it will last but it will be weeks to months. Who knows with this disease.
With some people it takes years with chronic fatigue syndrome.
I feel I've made a bit of progress since last week so I'm cautiously optimistic and I think most people will get better."

https://www.manchestereveningnews.c...-news/its-like-being-possessed-demon-18396486

It is fairly clear from this quote from June 2020 that Paul Garner knew what he was dealing with, was feeling optimistic about his own recovery and expected that most people would get better with time. So, even now, he must know at some level that it was not an unusual miracle of moral fibre that made him well again, nor that people with Long Covid needed his example in order to have hope for recovery.

I've been thinking about Paul Garner today, as I weeded the garden, trying to feel some empathy with him as @petrichor asked us to. I've got as far as feeling sorry for him, as I can't see that voicing such a different view now can be done without some ambivalence, without some discomfort and some awareness of the harm that he is causing. Certainly, I would not want to be him.

 

[Andy]

I think there are problems with some of the things Garner had said and done, though I largely see them as more silly and annoying things from an individual patient (though one who is well connected) than more than that. I also think a lot of them relate to problems with the some of the things some patients have said and done.

I have no sympathy or empathy for someone in a powerful and privileged position, who has his health (apparently) and who is using both of things to spread harmful messages about post-viral illnesses, or for those people trying to make excuses for him.

I have every sympathy for, and empathy with, those people who are speaking up in an attempt to counter those messages, especially as those people are likely to be in a massively disadvantage position and in ill health.

 

[Woolie]

Do I have empathy for Greenfield? Actually, yes, a bit. The backlash was probably devastating and humiliating. Do I think the backlash was justified? Totally. She was weaponising her fame to promote harmful, unfounded ideas. It needed to be called out.

Just thinking on it more, its probably really hard for people like Garner and Greenfield, because they are fully convinced that what they are saying is the truth that needs to be told. From their perspective, their critics are just nasty or bitter, or have some other agenda. It must feel pretty awful to be so 100% certain you're doing the right thing, and yet have people criticise you for it. It must make you feel like a bit of a martyr. Which might make you inclined to dig your heels in even more.

But I still think the criticisms must be made.

 

[FMMM1]

Are you questioning the beauty of the emperor's new clothes? That's a paddling.

Cultural pressure is one hell of a drug.

Yea you're right Cultural pressure is one hell of a drug- politicians echoing what the audience wants i.e. to get elected/re-elected!

 

[Trish]

Just thinking on it more, its probably really hard for people like Garner and Greenfield, because they are fully convinced that what they are saying is the truth that needs to be told. From their perspective, their critics are just nasty or bitter, or have some other agenda. It must feel pretty awful to be so 100% certain you're doing the right thing, and yet have people criticise you for it. It must make you feel like a bit of a martyr. Which might make you inclined to dig your heels in even more.

But I still think the criticisms must be made.

I can see what you mean, but in both cases they have used their reputations as scientists to promote something that has no scientific basis. They are therefore abdicating from the job of a scientist in order to promote a personal belief.

If they can't see that for themselves, then other scientists need to step up and make the case, both to them and to the public, that they are wrong and causing harm. And remove them from positions of authority in the scientific sphere. It's a matter of professional responsibility.

Why hasn't Cochrane removed Garner as a senior editor, why hasn't his employer and anyone funding his research told him to desist from this public display of non-science, and if he refuses, why haven't they sacked him?

 

[TiredSam]

Why does empathy have anything to do with it? PG is factually wrong and causing harm without regard to the consequences to others of his one-man ego trip. He needs calling to account and the false information he is spreading needs correcting before it causes further harm.

Forum members might as well be accused of not feeling enough love for PG, or enough trust, or wonder, or sadness. Are we allowed to feel annoyance, anger, concern? Can somebody please produce a list of feelings and attitudes I'm supposed to have about PG, and those I'm not allowed to have, just so I know where I am?

And then can we perhaps discuss the accuracy of the claims he's making, the harm they are causing, and what to do about it?

This forum was set up so that we could have factual discussions without the distraction of finger-wagging about feelings. If I absolutely must empathise with PG, am I then allowed to remind myself that he is a conscious agent capable of making decisions and reflecting upon how his decisions affect others? That he bears the same responsibility as the rest of us for the effects of his words and actions? And that someone who chooses to abuse their position by spreading harmful misinformation with maximum publicity and maximum disregard for other views or the harm he is causing can expect to be reminded of their responsibility, face criticism, and be called to account?

 

[Caroline Struthers]

Since I don't follow this closely I'm really just guessing here. The NICE review has uncovered a pile of poo - poor quality psychological and/or exercise studies which are unblinded an have subjective outcomes. On the face of it the next step is easy --- NICE works on the basis of evidence so all of these studies have been downgraded and they cannot be included in the revised guidance. However, the "other" factors kick in --- vested interests (folks who benefit from flawed strategies), politicians (who haven't a clue/don't care) supporting the vested interests---.

One big push to get this right --- NICE's raison d'être is to assess the evidence and act on that; if they surrender on that, then they've removed the basis for their existence. I suspect that's why @Jonathan Edwards found himself being grilled by competent people, when he gave evidence to the review team - NICE wants to get back on track.

Some of the other stuff is just surreal @Caroline Struthers seems to have been told that the "user friendly" version of the NICE guidance doesn't have to align with/reflect the actual guidance.

I'm grateful to the folks who are challenging this crap --- the system needs that challenge.

EDIT - I think one of the things we can do is highlight that the real victims here are people who have lost their healthy lives - not those who are winging about loosing the pay check for treatments that don't work/research that doesn't deliver. That way we highlight, to the uninformed/uncaring politicians, that they should support us not the folks who are winging about supporting flawed psychological/exercise treatments.

My issue with the NICE has had to change tack. They reference Cochrane reviews in the GP/user-friendly version of the guidelines for tiredness (https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/management/management/), when in fact they have not used the Cochrane reviews but their own 2007 guidance for ME/CS. They won't change the guidance itself unless the August 2021 ME/CFS guidance changes. I am now arguing for them simply to remove the two references to the Cochrane reviews in the reference listing https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/references/. I don't suppose they will, but I haven't heard yet.

 

[Ariel]

other scientists need to step up and make the case, both to them and to the public, that they are wrong and causing harm. And remove them from positions of authority in the scientific sphere. It's a matter of professional responsibility.

Why hasn't Cochrane removed Garner as a senior editor, why hasn't his employer and anyone funding his research told him to desist from this public display of non-science, and if he refuses, why haven't they sacked him?

Every time I see, think, or hear from Paul Garner, this is what I am thinking about. I am more concerned about this than about what he is actually saying and doing. You are always going to have people like this engaging in some nonsense. Why don't the people around him and whose reputations he is using for credibility (eg LSTM) do something? Isn't it their professional responsibility? Are they not embarrassed?

I am sure if he was saying this about cancer patients and he'd recovered or "dodged"/"overcome"/"stared down the barrel" of cancer and was telling unscientific and patient-blaming stories about it, people may have all the sympathy in the world for him initially - they may feel sorry for him - but after a while this would become professionally unacceptable and they would no longer wish to be associated with him if he persisted in engaging in a harmful public relations campaign.

It's really worrying that nobody has cut ties with him, and that this material is displayed on the Cochrane website. Is it going to appear on his webpage at LSTM too? If this was about something else, he would have been asked to stop or sacked. I cannot imagine being able to get away with such conduct (nor would I engage in it, obviously).

 

[Caroline Struthers]

Every time I see, think, or hear from Paul Garner, this is what I am thinking about. I am more concerned about this than about what he is actually saying and doing. You are always going to have people like this engaging in some nonsense. Why don't the people around him and whose reputations he is using for credibility (eg LSTM) do something? Isn't it their professional responsibility? Are they not embarrassed?

I am sure if he was saying this about cancer patients and he'd recovered or "dodged"/"overcome"/"stared down the barrel" of cancer and was telling unscientific and patient-blaming stories about it, people may have all the sympathy in the world for him initially - they may feel sorry for him - but after a while this would become professionally unacceptable and they would no longer wish to be associated with him if he persisted in engaging in a harmful public relations campaign.

It's really worrying that nobody has cut ties with him, and that this material is displayed on the Cochrane website. Is it going to appear on his webpage at LSTM too? If this was about something else, he would have been asked to stop or sacked. I cannot imagine being able to get away with such conduct (nor would I engage in it, obviously). Perhaps I am not a middle-aged white male.

Garner is a founder of Cochrane and very well liked by most Cochranites I think. That Cochrane camaraderie/collegiality seems to trump everything else so he will never be turfed out.

 

[petrichor]

I didn't expect this discussion about empathy to keep going on, it was more of a point that I thought people would mostly ignore. I still think keeping in mind the nature of experience that contributed to his current behavior is a useful thing though, and that having some empathy (or sympathy) for him where possible is still a good thing. It's not a question of whether he's right or wrong (he's wrong) but how to understand his behavior and respond to it. Showing empathy for Paul Garner's experience is in some regards actually something he doesn't want you to do - because if you talk too much about how bad post-viral conditions are you encourage things like focusing on symptoms, catastrophizing and social infection.

I do genuinely feel sorry for what he went through though. It would have been very confusing, there would have been a lot of uncertainty, and he may have had to deal with worrying about colleagues judging him. I think his current behavior is a result of both finding a way to put that uncertainty and confusion to rest, and dealing with concerns that colleagues judged him for what he went though and how he initially talked about his condition. Doctors who've had Long Covid and similar conditions have talked about judgement from colleagues.

When I interact with doctors I sometimes have this temptation to make a show of acknowledging the psychological aspect of ME/CFS so they don't think I'm one those crazy Chronic Fatigue patients that are convinced they have a physical condition when it's actually a psychological condition. And he would interact with doctors far more than I do, so the pressure to save face for him would be greater.

 

[Ariel]

Doctors who've had Long Covid and similar conditions have talked about judgement from colleagues.

Shouldn't they then do some reflection and try to help change this culture by providing more accurate information from their privileged position as part of the community?

If they recover, is it okay to instead come up with a story that affirms everyone's worst prejudices just to be part of the dominant in-group again and garner (sorry) attention?

I know it's hard to face judgement from people around you, but people who do not try to change things for the better for other people from their position of privilege, power, and trust - and in fact do the opposite - have taken a position. It is to leverage this for (perceived) personal gain at the expense of very ill people, and people less fortunate than themselves.

I would love to hear more from other doctors and professors of medicine with Long Covid who would like to help educate the medical community and bring about positive change for those less powerful than themselves.

Edit: added "perceived"

 

[Jonathan Edwards]

It would have been very confusing, there would have been a lot of uncertainty, and he may have had to deal with worrying about colleagues judging him.

From my perspective as someone in a similar job to Garner I really don't recognise this. Colleagues might have judged him for being careless enough to get infected - which in his case was unlikely to be from seeing sick people in A/E. But the medics I know with LongCovid are given huge sympathy and concern by fellow medics. There is nothing confusing about being sick for months after a viral illness that kills some people and causes severe pneumonia in others.

There would be uncertainty but doctors deal with that sort of uncertainty on a daily basis. It is our life to follow the uncertainties of ill health. That always includes nearest and dearest from time to time and oneself on occasion. If I had had Covid I would just go on saying - well at least I'm alive.

I wouldn't be at all surprised if some young female doctors got unhelpful attitudes from colleagues - we all know the prejudice there - but for a male professor who is retirement age nobody is going to be judgmental. They are more likely to encourage him to retire sick so they can be promoted.

Garner trained four years after I did, at a time when dying from chronic lung and heart disease in your fifties was commonplace. He comes across now as behaving like a first year medical student who has never registered the realities of life.