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

Well, I guess we can kiss any progress at Cochrane goodbye. This is why anecdotes are unreliable.

https://blogs.bmj.com/bmj/2021/01/25/paul-garner-on-his-recovery-from-long-covid/

Good for him, bad for nearly everyone else.


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.
 
I wish him well and hope for his sake he doesn't relapse. It doesn't seem to have occurred to him that what he experienced could just as easily be explained by a natural recovery process from PVFS ME/CFS.

I had a 6 month PVFS after some sort of glandular illness many years before my ME. Paul Garner's description of how ill he was for a few months matches pretty well my experience then. I didn't need psychobabble to get me out of needing to rest full time. I simply recovered and got on with life.

My experience with ME has been completely different. I've never been afraid to push myself. I spent years doing so - and got sicker and sicker.

I think this article will set back the ME and post Covid story signficantly.
 
Well, I guess we can kiss any progress at Cochrane goodbye. This is why anecdotes are unreliable.

https://blogs.bmj.com/bmj/2021/01/25/paul-garner-on-his-recovery-from-long-covid/

Good for him, bad for nearly everyone else.
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https://twitter.com/TomKindlon/status/1353799028937531393

#EBM

A patient has posted a #LongCovid/#MEcfs recovery anecdote.

vs

In £5 million "definitive" trial of #CBT & #GradedExerciseTherapy for #CFS, recovery rates with both therapies were very low & not statistically significant different vs no therapy group
https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724
 
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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.
 
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I wish him well and hope for his sake he doesn't relapse. It doesn't seem to have occurred to him that what he experienced could just as easily be explained by a natural recovery process from PVFS ME/CFS.
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.
 
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Trish, Can I suggest that you post a link below his blog to that article (rapid response!) I 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.
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.
 
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 :(
 
The ME community sent me unsolicited emails about mast cell deactivation, biological causes of my illness, and told me to rest.

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?
 
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I have written a response to Paul Garner's story which is currently awaiting moderation by the BMJ. In case anyone's interested, here's a copy.

An interesting story, but as all doctors know, anecdote is not evidence. I am pleased, of course, that Prof. Garner has recovered from his post viral symptoms, and wish him well. I am, however, very concerned that this anecdote may be taken by other clinicians as evidence to push their patients to exercise. Or to recommend unevidenced 'therapies' like the one described here.

As someone who has experienced a six month severe post viral illness much like that Prof Garner describes 43 years ago, I recognise the anxiety it can induce. But the deduction that it is changing thought processes that leads to recovery is, I have to say, nonsense. There was no such pyschobabble for me to turn to back then. I simply rested while I felt too ill to do anything else, tried to get going again a couple of times but felt worse again, so went back to resting. Until one day when I tried activity I found I no longer relapsed. I had recovered. No magical thinking needed, no therapy. Just time and rest.

30 years ago, following another infection, a similar post viral illness set in. This time, I wasn't told to rest, I was told to keep going, and did so to the best of my ability. I wasn't afraid to exercise, I was very positive that I would gradually recover, I continued working part time and caring for my young family. For 14 long and difficult years I struggled on, not giving in to the illness, pushing and crashing, feeling dreadful but not giving in to it. I had no preconceptions about whether my symptoms had a physical or mental component, I just did my best to ignore them and get on with life with the job and family I loved as best I could, though if I pushed a bit too much, I would relapes and be confined to bed for days. I always dragged myself to get going again, just as Paul Garner describes. But I kept on crashing and getting sicker until I had to give up work altogether.

I was devastated that I couldn't beat this thing as Paul Garner claims to have done by thinking himself better. I am now largely confined to bed after all those years of not giving in to my symptoms. If I try to do a bit more, as is my natural longing to do, every time, I end up getting sicker. I know lots of others in the same boat. We keep trying whatever 'cure' is on offer with the desperate wish to get well, we push ourselves to see if a bit of exercise, or some postive thinking, or doing enjoyable things, may help, and find yet again that is worsens our symptoms.

What I take from that is, if you can get up and get on with life, and push yourself to exercise, as I did after 6 months 43 years ago, you don't have ME/CFS. If, no matter how postive you are, and how much you ignore your symptoms, you find that trying to exercise makes you sicker, you may have ME/CFS, and no program of positive thinking is going to change that.

Tellling people with ME/CFS who still suffer post exertional malaise that forces them back to bed for days at a time when they try to exercise, that magical thinking will cure them is cruel and unethical. There is no credible research evidence that any changes in thought patterns or graded exercise program will cure ME/CFS. In fact, to the contrary, there is evidence from many clinical trials that graded exercise therapy does not lead to any objective or long term benefit to people with ME/CFS. If exercising makes you feel better, you don't have ME/CFS. If it makes you sicker, you probably do.

Many hundreds of people with ME/CFS, including the cardinal symptom post exertional malaise, have been made much sicker by graded exercise therapy that persuaded them to push through and ignore their symptoms, and by courses of magical thinking wrapped up in scientific sounding terminology that has not a shred of clinical trial evidence to back it up.

As I said at the outset of this response, I wish Prof Garner well, but please, please, take a step back and consider the impact of one person's anecdote on others not so lucky.
 
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.
 
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 :(
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.
 
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.
 
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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.
 
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