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

I feel the big issue here is the lack of distinctive biomarkers. Anyone can easily receive a diagnosis of ME depending on the experience and knowledge of the ME clinician or GP. I would have a lot more respect for PG if he would have stated this on his blog, and perhaps reconsidered his diagnosis? Instead he went a step further on how he 'beat it' with his manly man 'fight'. His irresponsible statements and lack of knowledge regarding ME is an insult to all who have been dismissed and gaslighted for decades.

 

Those who claim that positive thinking can affect illness recovery have the burden of proof, because they are making the claim.

The only knowledge you need is what constitutes sufficient evidence. PG's n=1 anecdote of how he thinks he recovered certainly doesn't, it's far more likely that he was going to recover anyway and couldn't resist giving himself a pat on the back for bringing it about. He might as well claim that having a smug self-congratulatory attitude was the key to his recovery, or a new brand of tea, or whatever.

Any time positive thinking has been subjected to proper scrutiny it has not been shown to have any effect on recovery, for example here:

https://www.apa.org/monitor/jan08/cancer

And many other such studies to be easily found by googling "positive thinking cancer recovery study". Not only is positive thinking ineffective, it is also a common tool of abuse not only in medicine but many other fields. For example if a multinational corporation wants to lay off 5000 workers, it sends them all on a positive thinking course 6-12 months before the announcement. Then when the announcement is made, instead of unions taking to the streets, they have 5000 former employees who have been conditioned to see opportunity in adversity and go off with plans to thrive and prosper. Gets the company off the hook.

Until some disinteresting party conducts a methodologically sound trial to prove such a proposition, I have no reason at all to believe such a thing. I don't have to claim or prove it to be impossible. Those who make such claims often have something to sell, or an ego to boost, or a belief system to support, or some other conflicting interest which means their claims should be taken very sceptically. PG is no exception to this.

 

The example uses people in authority that someone would normally learn from and listen to.

I can see that may not have been the intention but to compare this quote with Garner saying listen to those who have recovered rather than those still ill. It does rather equate those who have recovered with the teacher.

The teacher is normally the teacher because of specific education and a greater knowledge of a topic.

 

It should be a separate paper, as Stubbs says it will be "out soon" and that physiotherapists will be among the authors, unlike the paper on CBT.

 

I generally wish that people were more cautious in the way that they presented their personal health stories, especially when we often don't have good evidence to help explain what happened and why. There are reasons for scepticism about aspects of the interpretation of his health Garner presented in his January blog. Given what we know, it does seem likely that he would have just recovered naturally. It seems quite normal for there to be a relatively low burden of proof for people giving their personal stories though and I don't think we should be angry about this blog not being held to a higher standard. One can argue that the BMJ should not publish blogs like Garner's but that argument should have also applied to his earlier blogs.

At the same time, you'd asserted your own truth claims, like "positive thinking is an offensive lie". Currently it's difficult for us to be certain about anything and I think it would be better for people to be more cautious generally in the claims they make regarding ME/CFS. Garner's blogs had always been less cautious than I'd have liked on his post-covid symptoms but I also felt that it was relatively clear that they were like some form of personal story.

I was just trying to illustrate that the sentence does not make the broad claim that we should not listen to patients who are still ill. I wasn't equating anyone with anyone.

 

The test to determine whether some behaviour or statement about ME/CFS is okay or not is to replace ME/CFS with some respected illness. I find that this helps put things into perspective and opens one's eyes to how normalized it is to treat ME/CFS with disrespect.

You might say: but maybe some people are really recovering through positive thinking. Perhaps, but in the case of doubt, one should assume that such claims are not true.

 

Personally, I'm doubtful how much 'positive thinking' helps with problems with depression or anxiety and fear that this can easily be exaggerated, but it could be that forms of it it really help some people. It could also be that forms of anxiety or depression or symptom focussing play a role in some people developing a condition like ME/CFS and that a form of positive thinking helps them. There is so much uncertainty around ME/CFS that I think it's difficult to make definitive statements about much.

 

I most certainly did, and as evidence I would refer to the numerous ways variations on the positive thinking myth have been used to abuse our patient community over the last few decades, the role it plays in the patient-blaming we are all familiar with, and more widely how it has become commonly accepted in western culture over the last couple of centuries in much the same way that Freud's nonsense was, and how it is widely used to abuse, blame and cash in by various bad actors. I can recommend "Smile or Die" by Barbara Ehrenreich for a good description of the subject, it's a while since I've read it but I think she refers to studies of 30,000 cancer patients and the like.

I would also feel confident in asserting that homeopathy is a lie, because when something has been claimed for so long, and you can trace it back a hundred years or so to its beginnings, there has never been any evidence adduced of any standard to prove it, and all methodologically sound trials have produced results no better than what would be expected by chance, it's ok to start calling it a lie, a delusion, a load of nonsense, quackery or whatever. It's not as if its proponents haven't had enough time or opportunity to demonstrate the truth of what they are claiming. After a few decades / centuries / millenia their claims start wearing a bit thin (astrology's another one) and I think I can permit myself a few choice words about beliefs which are being peddled as reasons for it being my own fault I'm not recovering from ME.

 

I suspect that expecting homeopathy trials to not give results in a homeopathic form is a bit unfair.

Of course they give positive results - the proof is there for all to see, in the total undetectability of positive results.

Homeopathy, a complete absence of detectable evidence proves it really works.

Totally internally consistent.

 

Like results in psychosomatic research then - all in the mind of the researcher?
Makes sense.

 

Re: homeopathy I have seen it claimed that its use is justified because of the placebo effect. I have seen it framed as an ethical quandary - i.e. we know it's BS but the placebo effect is real. So shouldn't we do it? (Please note I am not agreeing with this line but have heard this from quite a few quarters.) Perhaps "positive thinking" adherents should claim something similar. But they do not. It's never acknowledged that it's BS, and the "positive thinking" framing is used to abuse patients and as the basis for as many quack practices as people are able to think up, as @TiredSam was saying. It's not - well, this is BS, but let's give it a go.

 

Let's face it, Garner has been handing out judgments about people he doesn't;t like for the moment all along. First nobody was interested in his protracted illness, then they were too interested, then the NICE committee caved in to activity and in the meantime everyone except him is too flabby to make themselves better and... From start to finish this seems like a trail of daffodil petals.

 

We had quite a chat about the placebo effect here:

https://www.s4me.info/threads/placebo-effect-discussion.10017/#post-307560

The placebo effect can only cause a subjective feeling of improvement, but is not able to cause objectively measureable improvement. The common perception of the placebo effect as something more powerful is apparently a misunderstanding. So in this sense the placebo effect isn't as "real" as it is widely claimed to be, so the ethical quandry doesn't arise because the placebo effect can't actually make you better.

At least I think that was the conclusion of our discussion linked above.

 

This is an excellent book and one I recommend often

 

Code:

https://twitter.com/SonyaChowdhury/status/1367077192363085825

https://twitter.com/user/status/1367077192363085825

 

well, I read it that way. If he says not listening to sick patients was part of how he got better, isn't that saying don't listen to people who are still ill if you want to get better like me? How is it not?

 

But even that's very different to accusing him of making the broader point of "don't listen to patients who are still ill".

Saying "don't listen to patients who are still ill" is a real attack on patients who are still ill and presents them as not being entitled to influence even matters directly relating to their own lives.

If Garner thinks the contact he had with still-ill patients was unhelpful for his health and the contact he had with a recovered patient was helpful for his recovery, that's much more in the realm of a legitimate personal opinion.

Though there are still problems with the way he presented his story.

 

Really? I really don't see a difference. You mean, he might be willing to listen to patients if it doesn't have to do with his own recovery? Are you positing that his statement isn't rejecting ALL things sick patients say, just the things related to their lack of recovery? I really don't get the point. You are parsing his language in a way that seems far-fetched to me. And anyway, if he doesn't want to listen to them when they talk about being sick, you mean he might listen to them if they're discussing what they were watching on Netflicks?

 

I'd be much more irritated by someone saying that they don't think I should be listened to, rather than saying that they didn't find what I have to say about how to recover from ME/CFS useful.

I also think many of Garner's colleagues would see a difference between what Garner wrote and what some people are accusing him of having written.

Or listen to them if they were talking about what their priorities were for further research, or how they wanted to be treated, etc.

The blog itself doesn't really say much imo and what it implies is going to be shaped by the reader's prior assumptions and knowledge. Given that this is a blog about the personal story of someone who was ill I don't see much benefit to taking particularly critical interpretations of it, and that could just make things worse.

eg, Garner wrote:

Recognising that his experiences may not be the same as others, but saying that for those like him (who think their tissues have healed) might be interested to know that he thinks his recovery was assisted by listening to people who have recovered from CFS/ME, not people that are still unwell, is pretty different from telling people not to listen to those still ill with ME/CFS.

There are definitely still problems with what he wrote, but any inaccurate or misleading criticisms are likely to be particularly counter-productive here and I don't see much chance of benefit from completely accurate and carefully explained criticisms either.