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

It was probably too near the bone.
Geoff C said what I was going to say.

 

@dave30th the recent appropriation of $1.25 BILLION for long covid is getting very very little press. Does it fall in your realm to do an interview with Emily Taylor to give it a bit more publicity and educate us on next steps. Solve has asked for ideas of types of projects to support in their role with NIH but that has received virtually no feedback on social media.

With your delving into CBT and GET and woo woo topics a piece about how funding further such projects is money down the drain when we don't understand the biomedical basis of PEM which needs to be studied first.

 

I'm curious what other longhaulers will say about PG's LP/GET recovery. I'm worried about longcovid children. Edit to add: It could set them up for medical abuse or Münchhausen by proxy accusations if this "cure" becomes popular

 

The few reactions I've seen were all very negative.

e.g.
https://twitter.com/user/status/1353827545305780227

 

I'd say most of the blame is on BMJ for this. They lend their credibility to this, labelling it as opinion doesn't change that. Sure, they published his other texts, but Garner was not making strong claims, certainly not pushing his experience as something that should be generalized. He was certainly not pushing the medical equivalent of The Secret, promising a quick recovery out of something that is potentially very harmful.

BMJ is continuing to lower the standards in medical publishing, at this point almost nonexistent, frankly. They didn't have to publish this, at least not without serious edits. BMJ may be sued for this in the future, if people follow this advice because it came from a credible medical publisher. Would they publish someone's account of curing Crohn's disease by drinking aged urine? I doubt that, but both claims are equally farcical.

 

I was curious and mostly see no reaction at all, barely a handful so far. I imagine most of the conversation is in Facebook groups and the like, more private.

 

yeah, I've wanted to do something about this.

 

The idea of recovery is interesting. From the suggested timeline he might have had something like six weeks free, to what extent we do not know, of symptoms. By his account he then caught Dengue and was il. If he recovered fully from that he cannot have had much more than another six weeks symptom free. He may yet be lucky. He may not be.

 

https://twitter.com/user/status/1354046225553752065

Code:

https://twitter.com/SimonDecary/status/1354046225553752065

 

I can say that my personal experience in trying to get BMJ journals to correct the record and adhere to their own research standards when it comes to papers in this field has not been promising.

 

I find Garner interesting, in that he went out of his way to reach out to the ME community, and clearly found some comfort in connecting with other ME and long covid sufferers at a time when he was being dismissed by his doctors. And then the second he's better, he immediately dumps on the only people who gave him the time of day when he was sick.

No one set him on the wrong path, most pvfs patients recover and presumably he was told to manage his symptoms until he felt better. I doubt that any ME patients were rooting for him to have lifelong illness, tho I'm sure he can be forgiven for worrying that he might end up that way. I feel like all this is a reaction to suddenly finding himself on the right side of his peers again, and reflects very badly on him.

 

Paul Garner first did not take post-viral conditions too seriously, then he took them very seriously and even found the neglect of medical science in this area "appalling", and today he… once again does not take them too seriously.

However disconcerting and frustrating these shifts are, I can't help but see here a sadly familiar pattern. How many of us pwMEs first encountered disbelief, then after years sometimes of hard advocating for awareness of this illness with everyone all the way up to our closest relatives, after years of labouring to describe PEM and the concrete and very real debilitating nature of this illness and showing articles and testimonies and videos and all possible "evidence" (if not of the nature of the physiopathology, at least that there is one), eventually and finally succeed at having these people take it seriously, - only to feel that, were you to tell them "You know what, it suddenly occurs to me I was not really sick all these years, maybe just depressed and hence all that time spent in bed" - they would believe this new version of your illness in a snap! Without any need for an iota of evidence this time.

Garner is a perfect reminder (as though we needed one…) that we must constantly fight against preconceptions and prejudices just waiting to kick back in. A reminder of this perversity that leads so many people to not take our word… And that, yes - we need a solid biomarker for PEM!

Of course there are also some good people out there who first do not know much about ME and then become the best possible allies (some in this group).

 

I'm sure that I've said and believed unreasonable things about my health at some points in the past and I feel like Garner ended up in a difficult position being in a public advocacy role when he was newly ill with debilitating symptoms. I can see how I could have come to see myself as impressive for 'disarming' the gun of ME if I'd recovered after a brief period of ill health, especially in the context of people encouraging that view (like Recovery Norway, the "you managed to exact yourself from the ME belief system much quicker than anyone I've seen" tweet that Garner liked: https://www.s4me.info/attachments/cbedafac-3d4a-46da-aad2-ffb4c11cc02d-jpeg.13075/_).

In his May blog he seemed confident his symptoms were really unrelated to PVFS, eg: https://blogs.bmj.com/bmj/2020/05/0...ith-the-constantly-shifting-bizarre-symptoms/

I can see how this would have been a really weird time for him and how his career/job/culture would add some many extra layers to peoples' innate desire to imagine that they know what is happening with themselves. It does seem like Garner flitted from one confident belief to another, to another. Doing that so publicly is going to have been an extra difficulty for him.

In his most recent blog he says:

Why did he do this?

It seems a bit weird to me that he went from belief to belief (seemingly without much supporting evidence) instead of just accepting that he doesn't know what was going on. At the same time, different people have different ways of thinking about their lives, and I've certainly seen other patients be like this (generally, the ones who tweet the most!). Probably foolish to think that this is an approach a professor in evidence synthesis was less likely to take.

 

I wondered this also about why he would tell his friends that he definitively had mitochondrial damage. It's as if he's blaming ME research into mitochondrial dysfunction for his decision to adopt this stance. He also equates post-viral fatigue with what he's calling CFS/ME. Who said they were the same thing?

 

All of you expressing your best wishes for his continued recovery are much more accommodating than me. I feel like we’ve just been thrown under the bus again and facing a huge set back that I no longer have the stamina to face. I have no sympathy left for ignorant and harmful professionals who ought to know better.

 

Honestly the "I told people I had mitochondrial damage" is a complete stereotype of ME patients... I think he is retroactively reinterpreting his previous experiences through the lens of "crazy ME patients".

 

It's difficult to see how it can be usefully addressed, and I suspect that acting as if this personal story warrants even more attention isn't going to be useful.

When looking at people replying on twitter I was just thinking that doesn't replying to tweets mean that twitter's programming interprets this as a reason to show it to even more people? It's hard to respond usefully to an anecdote like this anyway imo. But anecdotes seem to have a lot of power.

I'm hoping for an alien invasion some time soon.

 

I remember that one of his earlier comments revealed he had inaccurate views on mitochondrial abnormalities in ME/CFS. Maybe that he misunderstood because he had so little time to take in and make sense of information, or some patient who misunderstood passed along incorrect information.