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

The problem here is that there are plenty (as in lots and lots) of people who were sick many years ago and had no idea as to anything to do with ME or had any other notions about chronic illness. Indeed many people lived lives of confusion and frustration as they tried to carry on as usual or tried any number of things including rest and yet still continue to be ill.

 

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https://twitter.com/TomKindlon/status/1353799028937531393

 

Maybe ME/CFS and long covid does make you go mad, in a way. Patients start believing in weird ideas that promise improvement because they can't stand the idea of remaining sick.

I wonder if he'll stay healthy.

 

Trish, Can I suggest that you post a link below his blog to that article (rapid response?) that I seem to remember you wrote which cautioned about taking too much notice of anecdotal accounts, and (as far as I recall) made the point that when people recover naturally they often attribute that recovery to whatever whacky therapy they’re trying at the time.

I thought a professor of epidemiology might have a better understanding of science. Naive of me, I guess.

Edit to add – I’d recommend ignoring him on Twitter. Best not to attract attention to him, or worse – attract trolls.

 

What?! Are you saying my magical "cures all colds" rock that I placed beneath my pillow every time I have a cold is a sham? It worked every time!

Now excuse me while I bottle mustard slabs for my cancer cure which 100% works if you only consider that one anecdotal case that no one verified.

But seriously this shows everyone is subject to superstitious nonsense. An EBM expert is seriously pushing his N=1 anecdotal case as generalizable. Not sure how he'd explain why it initially failed when he had never heard of ME and dismissed it as a possibility. People are so damn weird.

But on social media I would advise to ignore him. It will be used to promote the usual trope. Not may, it will.

 

https://twitter.com/user/status/1353799853592207361

 

Also, the fact that people do get well after a prolonged illness response to a viral infection has never been unacknowledged OR disputed. At least not by anyone in the ME community that I've ever heard of.

There has been so much politisation around ME thanks to the BPS lot who have never given a fig for scientific curiosity or inquiry into why some get better when others don't and indeed are very confused on the subject. So far confused that the long written record of talking about all this is in no way coherent. They routinely contradict themselves (but one needs to go to original quotes in context over time to see it).

Although most of what they say falls into the too vague a statement to pin down what they mean (you're meant to bring your own interpretation). Which is the hallmark definition of bullshit (the metaphorical kind).

Again, there is all kinds of attention paid to people recovering. That BPS people plead otherwise is because recently people with ME (people who have not been able to recover despite collectively trying a great many things) have finally, finally been able to make their voices heard.

For anyone new to all this it may of course look quite different. Especially if they are predisposed to feeling that those in positions of authority and who speak well must of course be right.

Fear can also be a powerful motivator. I find it quite understandable (but not acceptable) that there are so few who have the empathy to see our position rather than giving in to the fear that this can't possibly be true and it can't really be as we are reporting. There just has to be something that IS a solution. The possibility that there is not doesn't bear thinking.

 

This sounds like he's almost blaming the ME organisations for "wrong" advice? Why not mentioning the data talking about all those who didnt recover with LP, GET etc.?

Maybe recovery and the perceived regain of control is so traumatic that people need to rewrite their story to make sense out of something that just doesnt make any.

It would have been fine if he was just talking about his own experience but there's a strange connotation in his words

 

I saw some comments on twitter in which some ME/CFS patients seemed to be prematurely promoting one claim or other, some piece of advice or other. It always seems likely that sort of stuff will be counter-productive, and leave people who go on to recover feeling that the 'ME community' is dangerously riven with quackery. Not sure if anything can be done about that when people like to imagine that they know more than they do. I also expect that those who are most aware of how little they know are the least likely to reach out with 'advice'.

At the same time, I still saw others that we saying sensible things that emphasised how little we knew. It's a shame that no mention of that was made.

Garner did end up in a ridiculously odd position for someone with post-viral symptoms. If Long Covid is similar to other post-viral conditions then it seemed likely to be a bad idea for him to rapidly take on such a public role, but also, I can see why being in the middle of a pandemic would mean that people wanted to draw attention to the potential novelty of their situation.

We can say that it would be better if Garner had emphasised the relatively high rate of natural recovery from PVFS, etc, and recognised the limited value of his single experience (he makes some concessions to that) but on an emotional level this sort of response to his experiences isn't that surprising but it's worth thinking about what we can do to avoid these problems in the future imo. Tom Kindlon had tweeted about the natural rate of recovery for PVFS very early in the Long Covid thing, and that sort of thing seems important. Emphasising the problems with ME/CFS as a diagnosis and challenging those who present particular criteria as being of more value than they are could be useful? Again though, on social media there are all sorts of biases towards the confident over-promotion of simplistic narratives that works against us. I feel too old and tired to challenge things in tweet sized blasts.

For those who go on to quite rapidly recover (as many will), whose simplistic over-confidence is going to seem most valid?

 

https://twitter.com/user/status/1353806483700518915


https://twitter.com/user/status/1353807839429423105

 

I am not surprised by the way things have evolved and I don't think anyone should be criticised for whatever comments they may have sent to Gardner. It always seemed to me that he had little insight into either his own or other people's problems. He has made it clear that he has no clue about what ought to be the basic requirements for being Director of the Centre for Evidence Synthesis.

Apart from anything his analysis of the situation following a tip off by the Lightning people is naive to the point of absurdity. How does he know this is how it works - simple really, because that is what he always believed anyway it seems.

There are bigger fish to fry. Best to let Dr Garner enjoy his recovery and otherwise forget about him.

 

A biomarker for PEM just cant' come fast enough.

 

It appears to be the LP folks who got to him so most likely he is saying those things because of the process.

Seriously folks ignore him. Someone who has chosen to push a N=1 anecdote as generalizable despite being an actual expert on medical evidence about an illness that is well-known to naturally recover is not acting rationally. It's just one guy. It will shut down any progress with Cochrane but frankly I expect nothing from them.

 

Are some people just assuming this is LP based? Couldn't it be someone following Wyller's ideas. To me, jumping to assumption on anything to do with this seems like a bad idea.

 

Moderation note: Replying to a post that has since been deleted by the poster

Apart from anything this guy is supposed to be a healthcare professional, actin in the interests of others. Where in all of this self-advertising is the consideration of how it all looks to those who looked down the barrel of the gun and it went off? They are just the debris who can go and suffer it seems, now that he is recovered.

 

From what I read it looks pretty certain to be related to recovery Norge, it even uses the same phrase - listen to those who have recovered.

 

1. He is now brainwashed by Lightning process and everything he says about symptoms is irrellevant
2. Most people with acute post viral symptoms recover
3. He might come down with a permanent worsening after ignoring symptoms for a long while. I did exactly the same without Lightning Process, but I was never scared about getting symptoms either
4. He might have had a case of post viral acute hypochondria
5. This blog is completely irresponsible nonsense which will hurt A LOT of desperate patients with long covid and ME. Shameful.