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

[Hoopoe]

It occurred to me that it wouldn't be difficult for a fan of the BPS crowd to do this to someone using treatment methods they disapprove of.

I suspect the people who would do this are more the crowd that fears more mitigation measures against the virus, or who think long covid is an invention by governments for social control, or a way to hide vaccine harms.

 

[rvallee]

I suspect the people who would do this are more the crowd that fears more mitigation measures against the virus, or who think long covid is an invention by governments for social control, or a way to hide vaccine harms.

Yup. That's the thing, it's not just our BPS ideologues without scruples who would do this, there's a huge undercurrent populist culture that loathes any mention of COVID whatsoever. It's a marriage of convenience for both. Internet trolls and BPS ideologues roughly have the same message, they simply use different words but they also both never say what they mean or mean what they say.

It really should not escape anyone that there is a strong support for this ideology in the fringe extremist crowds. There's a reason their message is parroted in places like Spiked, NaturalNews and the outer fringes of politics. It's a natural fit. And it's not left or right, both fringes do similar things for their own reasons, e.g. Nathalie Shure and Fiona Fox. This is all very good business for alternative medicine, too. I'm sure many understand this. When people talk about "holistic" healthcare, insurance companies and alternative medicine quacks hear the same thing: katching$$$.

In the end, BPS is a political ideology first and foremost. Always has been. It's about deciding who deserves help and who doesn't, especially on the basis of other people, who work for a living, having to pay for it. It's not a coincidence that the antivaccine culture sprung out of The Lancet. They both take an ends justify the means approach and this here is no different than a caste or aristocratic system: some people deserve all the help, some deserve none at all.

 

[Robert 1973]

The e-mail quoted from in this article is unlike anything I've seen or heard about before. Any patient appalling enough to send something like that should be utterly ashamed of themselves, and they should be tracked down and prosecuted. If Garner is getting e-mails like that, that could help explain some of his own responses.

It is a sad fact of life that people who promote views that others strongly disagree with are often subjected to abuse and threats that the vast majority condemn, and the internet and social media appear to have catalysed this behaviour. Sadly, it happens to all politicians of all views, and most people in public life, and it is right that it is called out and condemned, and that individuals are prosecuted.

However, it is also unethical for anyone to weaponise any such threats by rogue individuals in order to silence legitimate criticism of their views. If this is done by medical professionals and results in harm to patients it is a serious breach of their duty of care and should result in sanction from the medical bodies to which they are affiliated.

This is a line which SW and the SMC crossed in what appeared to be an orchestrated campaign to silence valid scientific criticisms of very low quality research and BPS ideas. It was deeply immoral but also highly effective and it appears to be an approach that Garner is adopting.

 

[Hoopoe]

I'm wondering who would be stupid enough to send a death threat containing information that would help with identification (the rolex logo tattoo).

 

[Esther12]

It is a sad fact of life that people who promote views that others strongly disagree with are often subjected to abuse and threats that the vast majority condemn, and the internet and social media appear to have catalysed this behaviour. Sadly, it happens to all politicians of all views, and most people in public life, and it is right that it is called out and condemned, and that individuals are prosecuted.

However, it is also unethical for anyone to weaponise any such threats by rogue individuals in order to silence legitimate criticism of their views. If this is done by medical professionals and results in harm to patients it is a serious breach of their duty of care and should result in sanction from the medical bodies to which they are affiliated.

This is a line which SW and the SMC crossed in what appeared to be an orchestrated campaign to silence valid scientific criticisms of very low quality research and BPS ideas. It was deeply immoral but also highly effective and it appears to be an approach that Garner is adopting.

I think that it also depends on specifics, and that many of those specifics are more favourable to Garner than the SMC.

I think it's fair for patients to provide accurate quotes from researchers and doctors that illustrate troubling behaviour, and if Garner is getting e-mails like the one quoted from then I think that does help explain some of his own behaviour.

Garner has clearly decided he wants to engage in a PR campaign against those patients who he believes are helping keep others ill, and he seems to include quite a wide range of patients in this group (though he's not been entirely clear on this). I think that he's said and done some troubling things, but it's less clearly unethical than the behaviour we've seen from the SMC imo, and I think that there are examples of patients critical of CBT/GET who've behaved in similarly troubling ways, though with less of a soap box. It seems like Garner can easily slip into projecting quite a high level of confidence, even as he moves between quite different positions. We can also see patients critical of CBT/GET who can be overly confident that they're right about things that are still relatively uncertain, and so behave in ways that can seem ethically questionable to others. I had some concerns about Garner's blogs before his recovery, but it can be difficult to stay equally critical of behaviour regardless of what 'side' of a dispute it comes from. One of the big problems we've faced is that the tribalism and loyalties of so many of those with power over us is united against us.

Also, I think it's worth looking at ourselves and asking some questions. Thinking back at the way some people initially responded to Garner's recovery blog (or even before that), how surprising is it that we've ended up here? If people are surprised, is there anything to be learnt to help make more accurate predictions in the future? Are there things that could be done differently to reduce the chance of more bad things happening in the future?

I think that the more recent articles are quite different from the PR campaign run against patients critical of PACE back in 2011, and they're now more sophisticated and harder to criticise, but it's easy for us to just see them as more of the same old. If we're over confident in our arguments, or underestimate the improvements others have made, we're only going to make things worse for ourselves.

 

[Trish]

If we're over confident in our arguments, or underestimate the improvements others have made, we're only going to make things worse for ourselves.

I'm having trouble following your arguments, @Esther12. Surely @Robert 1973 is right when he says

it is also unethical for anyone to weaponise any such threats by rogue individuals in order to silence legitimate criticism of their views. If this is done by medical professionals and results in harm to patients it is a serious breach of their duty of care and should result in sanction from the medical bodies to which they are affiliated.

If Garner were simply reporting that he has had threatening emails from unknown individuals, that would be one thing. People could be sympathetic and the police could take whatever action they can.

But he is using this as a weapon against 'the ME community' who have no connection with the threats. He's following the Sharpe and Crawley example of disguising the lack of evidence for his claims about positive thinking curing Long Covid in fake arguments about being silenced.

And that's a deliberate cholce he has made. I think that choice is despicable.

 

[Esther12]

If Garner were simply reporting that he has had threatening emails from unknown individuals, that would be one thing. People could be sympathetic and the police could take whatever action they can.

But he is using this as a weapon against 'the ME community' who have no connection with the threats. He's following the Sharpe and Crawley example of disguising the lack of evidence for his claims about positive thinking curing Long Covid in fake arguments about being silenced.

And that's a deliberate cholce he has made. I think that choice is despicable.

What quote from Garner do you think is the most clearly despicable example of him using this e-mail (or others) as a weapon against 'the ME community' or trying to silence legitimate criticism?

I've not re-read the article, but my impression is that there's a move towards more cautious and vague claims than we've seen before, and that it's easy to give the impression of over-reacting in response to this, particularly if it's taken as part of an ongoing media campaign that many people are unaware of.

 

[Robert 1973]

Thanks for your reply @Esther12. Not feeling up to penning a long reply but I just wanted to add that even when I don’t agree with you I invariably value your comments because they help me to test my views, which is one of the things a forum like this should do. Sometimes that results in me changing my mind, and it has certainly caused me to be more careful with my language in public spaces.

 

[Trish]

What quote from Garner do you think is the most clearly despicable example of him using this e-mail (or others) as a weapon against 'the ME community' or trying to silence legitimate criticism?

Then I suggest you read it again. The whole article characterises us as anti science, viscious, 'Trump like', our personality formed by it, spreaders of misery... It's relentless.

A few quotes:

Garner has choice words for his anonymous adversaries: “I have been used to abuse before, but the level of abuse here — it’s like the activists are all on crack!”

The “activists,” in this context, are members of the ME community, which refers to Myalgic encephalomyelitis, or chronic fatigue syndrome.

When I sit down at his house to speak to him, his unwillingness to make concessions is striking. He speaks with something approaching disdain for those on the other side of the fence, describing the “activists’ who have turned on him as like “Trump-supporters”; bound so tightly to their tribe that their personality is formed by it, turning viciously on anyone who opposes their views. At other points he calls them “spreaders of misery” with continual stories of ill health.

“These people are blocking routes to recovery for patients,” he says.

Garner describes his run in with ME activists as like nothing else he’s experienced in his career. Medical science can be a contentious thing, public figures like Garner espousing a theory could have the capacity to change perceptions of an entire community of people suffering from an illness.

 

[Robert 1973]

Then I suggest you read it again. The whole article is characterises us as anti science, viscious, 'Trump like', our personality formed by it, spreaders of misery... It's relentless.

A few quotes:

I haven’t actually read the article – couldn’t face it. Those quotes are distressing and confirm my fears. I may unwatch this thread as following Garner’s output has such a negative effect on my state of mind – truly toxic positivity.

 

[MSEsperanza]

Also, I think it's worth looking at ourselves and asking some questions. Thinking back at the way some people initially responded to Garner's recovery blog (or even before that), how surprising is it that we've ended up here? If people are surprised, is there anything to be learnt to help make more accurate predictions in the future? Are there things that could be done differently to reduce the chance of more bad things happening in the future?

I appreciate your reminder to questioning over-confidence and apply some self-reflection.

In this case I agree with others who said that Paul Garner has been offered different views and advice and it was his choice to whom he listened and what he shared publicly.

I remember there have been many reasonable responses from the patient community too. I remember in particular, even though not directly a response to Garner but to another bmj article on the management of post covid illness that I assume Garner must have seen -- a response from @Trish

Patricia Davis, Re: Management of post-acute covid-19 in primary care - A warning to Post Covid sufferers and their clinicians, The BMJ, 04.09.2022, https://www.bmj.com/content/370/bmj.m3026/rr-7


Some quotes:

"People with ME/CFS are battered on all sides by a persuasive mix of treatments promoted on the basis of professional eminence, charisma, or compelling anecdotes, but devoid of good research evidence of efficacy or safety.

"First, there is the NHS itself. CBT and Graded Exercise Therapy (GET) have been the subject of numerous badly run and inaccurately reported clinical trials which showed, at best, transient improvement on inadequate questionnaires easily influenced by therapists. They showed no long term benefit, and no improvement on objective measures such as fitness or return to work [5]. Many patients report long term harm [6]. Yet the NHS still provides CBT/GET. The NICE guideline and Cochrane Review are currently being rewritten.

"Second, there are the multitudes of 'alternative' therapies with enticing sounding names, or named for their founders. None with any sound evidence of efficacy and safety [7]. All potentially eager to sell their wares to unsuspecting post Covid patients.

"Third, there are our fellow patients. ME/CFS is a fluctuating condition, so it is impossible for individuals to know whether to attribute an upswing or remission of symptoms to whatever treatment they were trying at the time, or to blind chance. It is a cause of great concern that we need to warn people with ME/CFS, and people with Post Covid symptoms, against a tiny minority of ME/CFS sufferers who are determined to promote what they believe has cured them.

"Social media campaigns are promoting unproven treatments for ME/CFS and actively targeting post Covid groups too. Some of these may be merely useless, like assorted diets and expensive therapies, but some are unproven and potentially dangerous, such as spinal surgery."

In my opinion it can't be blamed on the ME patient community if Garner could not cope with the flood of information he said he received.

I don't see an effective way how to stop others on social media responding to public accounts or commenting on articles with unhelpful advice or even harmful arguments.

Perhaps there could be more coordinated attempts at criticizing unhelpful advice or other non-evidenced medical pseudo-knowledge with regard to ME/CFS that people share on social media?

It could be worthwhile to think of a better co-ordination between charities / patient organizations / S4ME.

Perhaps we need a neutral space to discuss and suggest means to reach out to the patient community to ask them to not make exaggerated or unsubstantiated claims, and refer to reliable sources only, including suggest to agree on a collection of good sources or on which unsubstantiated claims should be avoided?

I think we have a couple of threads discussing such suggestions, both members-only and fully public. Will try to add links later.


(Once again apologies for only skimming -- I try to have a proper forum break now but difficult to abstain from following some of the current discussions)

 

[rvallee]

What quote from Garner do you think is the most clearly despicable example of him using this e-mail (or others) as a weapon against 'the ME community' or trying to silence legitimate criticism?

I've not re-read the article, but my impression is that there's a move towards more cautious and vague claims than we've seen before, and that it's easy to give the impression of over-reacting in response to this, particularly if it's taken as part of an ongoing media campaign that many people are unaware of.

He made several tweets saying just that. And this article, obviously. Some of the language in the tweets is inflammatory, and frankly unhinged. He is continuing the same old playbook, literally nothing different about it.

This is highly unethical behavior, a community of millions is not defined by the alleged behavior of one, or even a handful. Or even hundreds. They are separate people and do not represent us, if they even exist.

No honorable person ever does that. Even as an attempt at guilt-by-association, it's especially despicable. Coming from a medical professional, the fact that he isn't censured and called out, disciplined even, reflects extremely poorly on the entire profession.

 

[Esther12]

Then I suggest you read it again. The whole article characterises us as anti science, viscious, 'Trump like', our personality formed by it, spreaders of misery... It's relentless.

A few quotes:

But even there, where even the supportive journalist seems wary of Garner's vociferousness, it's not made clear who 'the activists' or 'these people' are exactly, and what marks them as 'us'. The whole article seems so lacking in specifics that it's difficult to draw much of substance from it or make clear claims about what Garner is arguing.

It's understandable to read it in the context of what has come before, but it not clear that the journalist writing it has much understanding of the context or what it is that leads to patients being classed as 'activists'.

There still wasn't a quote from Garner using the e-mail against the ME community (other than to say 'the activists' come from the ME community) or to silence any particular criticism.

At the same time, I also think I was wrong to present this as part of a more sophisticated PR approach, as that reads more like the vagueness is a result of a lack of detailed research and changing social mores.

Also, there are people who use similar terminology to describe those promoting PACE etc: 'Trump like', etc. I feel like that sort of thing is probably not helpful for anyone. I'm sure that I can often fail to properly explain my criticisms when I'm communicating with those who I assume will know what I'm talking about, but it can be a dangerous trap to fall into, and one that could make us come across to others similarly to how Garner comes across to us.

I appreciate your reminder to questioning over-confidence and apply some self-reflection.

In this case I agree with others who said that Paul Garner has been offered different views and advice and it was his choice to whom he listened and what he shared publicly.

I remember there have been many reasonable responses from the patient community too. I remember in particular, even though not directly a response to Garner but to another bmj article on the management of post covid illness that I assume Garner must have seen -- a response from @Trish

Patricia Davis, Re: Management of post-acute covid-19 in primary care - A warning to Post Covid sufferers and their clinicians, The BMJ, 04.09.2022, https://www.bmj.com/content/370/bmj.m3026/rr-7


Some quotes:


In my opinion it can't be blamed on the ME patient community if Garner could not cope with the flood of information he said he received.

I don't see an effective way how to stop others on social media responding to public accounts or commenting on articles with unhelpful advice or even harmful arguments.

Perhaps there could be more coordinated attempts at criticizing unhelpful advice or other non-evidenced medical pseudo-knowledge with regard to ME/CFS that people share on social media?

It could be worthwhile to think of a better co-ordination between charities / patient organizations / S4ME.

Perhaps we need a neutral space to discuss and suggest means to reach out to the patient community to ask them to not make exaggerated or unsubstantiated claims, and refer to reliable sources only, including suggest to agree on a collection of good sources or on which unsubstantiated claims should be avoided?

I think we have a couple of threads discussing such suggestions, both members-only and fully public. Will try to add links later.


(Once again apologies for only skimming -- I try to have a proper forum break now but difficult to abstain from following some of the current discussions)

I'm definitely not saying that Garner received no sensible comments from patients or that the ME community deserves some sort of collective blame for that appalling e-mail he was sent.

I also recognise that it's very difficult to stop some random weirdo sending a threatening e-mail. But there are some things we can do to try to encourage a culture of people feeling a responsibility to think about how what they do or so could end up making life worse for other patients, and it's worth trying to do something there.

There could be value in trying to encourage/discourage particular approaches, but I think that will be difficult with more than very simplistic guidance. It is really difficult for us when there are so many justified reasons for patients to be angry, and feel they have little to lose personally by venting that anger and frustration thoughtlessly in a way that might feel good for them in the moment, but can be used to do real harm to a lot of other patients.

I'm constantly making mistakes in how I present my views and trying to learn from that, but it felt like around some peoples' responses to Garner there wasn't much concern about making things worse. Maybe just encouraging more discussions about this and likely costs/benefits will help encourage a bit more thought and caution?

 

[hibiscuswahine]

This is highly unethical behavior, a community of millions is not defined by the alleged behavior of one, or even a handful. Or even hundreds. They are separate people and do not represent us, if they even exist.

No honorable person ever does that. Even as an attempt at guilt-by-association, it's especially despicable. Coming from a medical professional, the fact that he isn't censured and called out, disciplined even, reflects extremely poorly on the entire profession.

I agree,

but a) who in the medical profession, and it would have to some one high up in the UK medical establishment, (like really high up) be prepared to do a public take-down of him. He is likely to dismiss any journalists as biased and he has lots of friends in the BMJ (and Sharpe, if he retweets his stuff). It would have to be within the UK (or perhaps Europe) as he is a UK doctor and unlikely to respect an international coalition of doctors because they would be biased some-way by ME "activists".

b) To censure him professionally, you need some-one to report him to the GMC and they would have to have something concrete eg "safety to patients" (well, we know LP is bad and harms people, but you have to prove a direct line of medicolegal harm). He hasn't treated any patients (as far as we know of) he is just spouting LP rubbish to the world, which he could easily say is a legitimate treatment for LC because of LP's use in ME/CFS and quote the crap research from Phil and Crawley, SMILE etc (and unfortunately this is how they do it world-wide). He is only spouting stuff that has been legitimised in the medical establishment for decades and in complimentary and alternative medicine. He is on one mighty big soap-box and breaking his Oath to patients is not likely to get him censured as he hasn't treated anyone, he is an epidemiologist (and I think retired from medicine and practising, not sure on that). I don't know how influential he is on other doctors or LC patients as we have no data on that. He is likely to become an embarrassment to the medical profession (I think he is) and be told to shut up, but that doesn't seem to have happened in the last 2-3 years, and I guess some colleagues have tried to tell him but he seems to have got worse and he is a BPS/LP influencer.

b) will calling him out, actually change his behaviour? I doubt out, he will just get more enraged and determined and put out more rubbish. This could be a sole venture with a few cronies, like a BPS/LP retirement club or he has some other hidden agenda he is yet to reveal to the world.

The way I see it is we are calling him out here. That may be the only thing we can do.

I am not sure we can influence people in the ME community from interacting negatively towards him, here or on twitter etc.

Good to counter him with evidenced based arguments, but he hasn't listened so far and seems to be falling down a rabbit-hole, where will he come out next?

 

[Sean]

it's easy to give the impression of over-reacting in response to this,

It is. It is also for unethical people to wilfully misinterpret one's reactions, no matter what they are.

Thanks for your reply @Esther12. Not feeling up to penning a long reply but I just wanted to add that even when I don’t agree with you I invariably value your comments because they help me to test my views, which is one of the things a forum like this should do. Sometimes that results in me changing my mind, and it has certainly caused me to be more careful with my language in public spaces.

+1

I think I remember a few times when Sharpe re-tweeted some of the LP stuff, Garner's too, I think. I don't think they see it as competition at all, it's pretty much identical as far as they're concerned.

They think it is all the same underlying process and effect. Which is why they are so comfortable changing labels and the sales pitch so often. That it is just a matter of figuring out the right "magic words and sentences" to use to persuade us poor deluded snowflakes.

Garner describes his run in with ME activists as like nothing else he’s experienced in his career.

My 40 year run-in with fanatical psychs is far worse than anything else I have experienced in my whole life.

And it doesn't look like I will be given the option to be free from the cruel burden of their scientifically and ethically bankrupt impositions on what remains of my so-called life anytime soon.

So there's that.

 

[Peter T]

In trying to decide whether Garner is consciously using the apparent online threats to silence people who disagree with him or not is problematic as it requires access to his inner thoughts. That others have seemingly done this in the past, particularly the PACE authors and Crawley, even to the extent of falsely representing the threats against them, does not mean that Garner is intentionally emulating them.

Covid is already a highly emotive issue as has already been mentioned, with a maelstrom of every possible opinion being expressed to every possible degree and emotional overtone.

There is the possible alternative that Garner is rather allowing himself to get carried away. I think we have already see this in his public position on Long Covid and possibly ME. When he first believed he had Long Covid, he was casting the net for support very wide and was initially hailing the advice on pacing and potential PEM he received from what he referred to as the ‘ME community’, but then he became a born again advocate of exercise and positive thinking. That he is now touring the world (or at least speaking at international conferences) suggesting his personal experience offers a route map for the way forward, may indicate he is prone to the logical fallacy of composition (arguing for the general on the basis of a specific) a feature of the over enthusiastic.

It could be, rather than deliberately seeking to blacken all who disagree with him, with the tar of the few extremists who undoubtedly are engaging in criminality (that could be emerging from anywhere in the world wide Covid conspiracy chaos) he is just repeating his demonstrated logical predilection to argue the general from a specific. Because a small number of people he perceives as being part of the ME community have behaved badly he likewise illogically over generalises this to an entire patient group.

Obviously whatever Garner’s motives his misinformation needs to be challenged and whether malign or just illogical is not acceptable from anyone in his position.

(Also in the few months before Garner’s Damascus moment on the phone to Norway, around the time of his daily runs and his Caribbean scuba diving holiday, a fair number of ME forums and social media accounts were extolling him as a hero for his insights into the centrality of PEM in ME and ME like Long Covid as well as the essential use of pacing as a management strategy. However these insights were based on his then personal experience rather that wider observation or research. So perhaps also he feels we have betrayed him by rejecting his equally unscientific insights into exercise and positive thinking.)

I am unsure how helpful it was for him to conduct his ‘long Covid’ on social media, or to now conduct his ‘recovery’ across academia and the international lecture circuit.

 

[Hoopoe]

Someone should remind him that the brain is part of the body. There is not one category of illnesses which is distinguished by fluctuating or episodic nature of symptoms. A wide variety of illnesses have fluctuating symptoms.

Psychophysiological seems to be just another word for psychosomatic.

What he appears to be saying is: feeling better between crashes proves it's psychosomatic.

 

[Art Vandelay]

What he appears to be saying is: feeling better between crashes proves it's psychosomatic.

I'm sure sufferers of the relapsing-remitting form of MS will be very pleased to hear that they can overcome their illness with a quick phone call to a Norwegian life coach.

 

[Peter T]

I'm sure sufferers of the relapsing-remitting form of MS will be very pleased to hear that they can overcome their illness with a quick phone call to a Norwegian life coach.

But they must remember to also go on daily 5k runs and a diving holiday in the Caribbean for the full effect.

 

[Charles B.]

Someone should remind him that the brain is part of the body. There is not one category of illnesses which is distinguished by fluctuating or episodic nature of symptoms. A wide variety of illnesses have fluctuating symptoms.

Psychophysiological seems to be just another word for psychosomatic.

What he appears to be saying is: feeling better between crashes proves it's psychosomatic.

Nobody feels “better,” they merely feel less miserable. Also, what does Garner offer in the form of citations for this sweeping generalization?

After my appendix ruptured many years before developing ME, I went to the hospital, had it excised, and never discussed it again. I don’t know that anyone has ever discussed an apparent recovery from any illness more than Garner. I don’t anticipate he will stop either. I hope this culminates with Garner himself becoming an LP practitioner.