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

InitialConditions said:
Actually, I do recognise something similar. Especially from patient groups on FB! Some patients can be way too fast to attribute their symptom fluctuations to all sorts - something they ate, something they did, mouldy wall, changes in the weather, new supplement, etc. They can get really worked up. I've seen it again and again. It's definitely a minority, though.
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That is the point about Garner his symptoms got less and be attributed that to whatever the latest thing he was doing. But as he has a label of a scientist he gets to publish and talk about his attributions as if they were science.
 
"I got completely frightened that I’d be ill the next day. If you expect things to happen then they do."

i know Garner was talking about Covid in this tweet but .... really?

Most pwME just don't think like this.

Even with CFS clinics and GET the first thing they say they usually have to do is to get people to stop doing so much. It's just the wheels come off when they start to build up activity again.
 
gardner said:
You are a coordinating editor of the Cochrane Reviews that collect evidence to inform healthcare decisions, did you find anything useful there?
No, not really, but also I was still so sick that I couldn't actually read long documents at that stage. The Cochrane review of exercise treatment for chronic fatigue is very well done and it was useful to me later in the illness, although early on when I was still feverish I needed to rest. I was following the Facebook pages and I was really irritated by some of the stuff I saw on it - there was one post saying that ivermectin and tetracycline was a cure for long COVID, it may even have been from a doctor. And I replied “please hold on to your critical appraisal skills”. Ivermectin doesn't work unless it's 100 times the dose they suggested, and tetracycline is an antibiotic, and COVID-19 is a virus.
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So he is claiming that the Cochrane review is 'very well done' even though the trials they base it on are not worth the paper they are printed on (and the same is true of the CFQ that Cochrane relies on). But he is irritated by others lack of 'critical appraisal skills'. Basically his version of critical apprasial seems to be believe stuff published by people with the right labels without examining them in detail - especially when he needs to keep them happy.
 
InitialConditions said:
Actually, I do recognise something similar. Especially from patient groups on FB! Some patients can be way too fast to attribute their symptom fluctuations to all sorts - something they ate, something they did, mouldy wall, changes in the weather, new supplement, etc. They can get really worked up. I've seen it again and again. It's definitely a minority, though.

Edit. No, this is definitely not only confined to this illness.
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And does that mean all of them are incorrect? This disease is known for being very diverse and it is difficult to find two patients who have the exact same experience. I believe just because someone doesn't experience one symptom or the same type of fluctuation, it doesn't mean it doesn't exist. I understand when people question something that is simply scientifically impossible but otherwise why question others' experiences of their own symptoms even within the community? It's bad enough coming from doctors so why question each others' experience with such a spectrum-like disease?

Sorry, but I'm one of those "weather change" types and it makes my life so miserable that I couldn't leave such a comment unanswered.

It must be one of my unhelpful beliefs.

JemPD said:
Really? wow, thanks for sharing that, i again stand corrected. I guess it's easy to do when you're a layman grasping for answers to things that make no sense, especially in the beginning.

I imagine that the occasional person perhaps feels frightened & gets obsessed too. It would be interesting to find out if those who report recovery/improvement from the CBT/LP type approaches are those who get obsessed/feel frightened.
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Hm, the occasional layman person has these beliefs because they are frightened and obsessed and who probably report improvement after CBT/LP? This actually feels the opposite, that these people are viewed as someone whose experiences are not real and their symptoms are due to their misguided beliefs. That's what it sounds like, psychologizing, BPS and really rubs me the wrong way.

One thing that I find very important in my own group is to make sure pseudoscience is not involved too much but to also make sure people are believed when they tell us about their symptoms and fluctuations. No one really understands this disease very well, so who are we to doubt others' experiences, especially when our own ones have been doubted so often too?

I'm not saying no one is mistaken and people never attribute improvement, bad reactions etc erroneously to something but to me these were very sweeping generalizations.
 
rvallee said:
The executive director of The Lancet applauding blatant quackery peddled by a Cochrane co-founder and section director is late-stage institutional brain rot:



Notable fact: if you believe in it it will happen to you is quite literally the book The Secret, I suspect that it makes up a huge chunk of the LP belief system so here is the executive director of The Lancet pretty much applauding The Secret as medical treatment for a disease neither she nor Garner actually understand and this is everything wrong with medicine in its pure, distilled form
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So basically I can "expect things to happen then they do" --- who wants to be a millionaire, time travel --- are there any limits --- not really helpful is it --- in fact it's the reverse!
 
Adrian said:
So he is claiming that the Cochrane review is 'very well done' even though the trials they base it on are not worth the paper they are printed on (and the same is true of the CFQ that Cochrane relies on). But he is irritated by others lack of 'critical appraisal skills'. Basically his version of critical apprasial seems to be believe stuff published by people with the right labels without examining them in detail - especially when he needs to keep them happy.
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"The Cochrane review of exercise treatment for chronic fatigue is very well done and it was useful to me later in the illness, although early on when I was still feverish I needed to rest."
Imagine you're a bored soul doing a review of the correspondence re the draft NICE guidance and this gem arrives - from the great and the good. It would probably get circulated (to let others see the wisdom). Pity the statistics aren't going to be good I mean the mean [sum/(n-1)] isn't exactly going to work! Oh and he explains that if you "expect things to happen then they do" which negates his view that "The Cochrane review of exercise treatment for chronic fatigue is very well done and it was useful to me later in the illness".

Joking aside, it's a bit worrying that this made it's way into the original guidance - the point of this thread of course.
 
Adrian said:
I realize who the others are but these names didn't jump out.
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Guyatt of GRADE and the Busse letter on NICE's mistake, Glasziou (Bastian's supervisor and a coauthor on the Larun review that never saw the light of day and I think also on the Busse letter) and Mrs Floptop from 33 Acacia Avenue, Norwegian Institute of All Health (also on the Busse letter).
 
Kitty said:
It reliably triggers PEM, and it isn't the result of a dietary excess or underlying diabetes. A slice of cake can be enough.
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He was frightened he was allergic after feeling ill the day after eating cake, that's a reaction to a single incidence, not noticing a PEM pattern that has changed since he had Covid and coming to a measured conclusion. There is also the issue of age and other factors here, lots of people without ME have the same consequence of eating highly refined carbs.
 
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I'm writing something on this business, and here's a bit that I think might be pertinent, leading on from Garner's having 'looked down the barrel of the ME/CFS gun and disarmed it':

Let’s present an analogy. I left school at the age of 16 with five O Levels, having made a complete pig’s ear of the first term of a sixth-form course. I more or less lazed around for the best part of two decades, and then started a BA degree course in history, a subject I failed at O Level, and graduated at the age of 39 with a first-class mark. I then obtained an MA in social studies at 43 and a PhD in history at 48. Nobody would say that this is anything but a rather unusual educational path. More importantly, I would never recommend that my educational path should be the one for any 16-year-olds to follow. Yet this is precisely what Professor Garner is implying: just because he, to all previous appearances a long-hauler with ME symptoms, is back doing army-style physical jerks, that anyone with long-term fatigue can — and by implication should — follow his example.​
 
Wyva said:
And does that mean all of them are incorrect? This disease is known for being very diverse and it is difficult to find two patients who have the exact same experience. I believe just because someone doesn't experience one symptom or the same type of fluctuation, it doesn't mean it doesn't exist. I understand when people question something that is simply scientifically impossible but otherwise why question others' experiences of their own symptoms even within the community? It's bad enough coming from doctors so why question each others' experience with such a spectrum-like disease?

Sorry, but I'm one of those "weather change" types and it makes my life so miserable that I couldn't leave such a comment unanswered.

It must be one of my unhelpful beliefs.



Hm, the occasional layman person has these beliefs because they are frightened and obsessed and who probably report improvement after CBT/LP? This actually feels the opposite, that these people are viewed as someone whose experiences are not real and their symptoms are due to their misguided beliefs. That's what it sounds like, psychologizing, BPS and really rubs me the wrong way.

One thing that I find very important in my own group is to make sure pseudoscience is not involved too much but to also make sure people are believed when they tell us about their symptoms and fluctuations. No one really understands this disease very well, so who are we to doubt others' experiences, especially when our own ones have been doubted so often too?

I'm not saying no one is mistaken and people never attribute improvement, bad reactions etc erroneously to something but to me these were very sweeping generalizations.
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I'm not denying anyones symptoms, so I'm sorry if it came across that way. I am simply acknowledging that this phenomenon exists. If you've found what you think is a causal link between something and your symptom severity, then that's great. Paul Garner thinks he has found a causal link between conversations with Recovery Norge staff and his reduction in long-Covid / PVFS symptoms. My issue is the way he's running with that idea and thrusting it on others.

I remain skeptical. It doesn't mean I don't believe you.
 
Dr_Paul said:
Let’s present an analogy.
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While your experience of education is interesting in itself, and it's entirely up to you what analogies you use, I think there is too much of a stretch in this analogy for it to be useful in this context. To be honest, I'm struggling to see it as analagous.
 
Wyva said:
And does that mean all of them are incorrect? This disease is known for being very diverse and it is difficult to find two patients who have the exact same experience. I believe just because someone doesn't experience one symptom or the same type of fluctuation, it doesn't mean it doesn't exist. I understand when people question something that is simply scientifically impossible but otherwise why question others' experiences of their own symptoms even within the community? It's bad enough coming from doctors so why question each others' experience with such a spectrum-like disease?

Sorry, but I'm one of those "weather change" types and it makes my life so miserable that I couldn't leave such a comment unanswered.

It must be one of my unhelpful beliefs.
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I agree with what you've said but that wasn't quite how I read the post you responded to.

In the absence research and answers people are bound to try and make sense if things. Sometimes they'll be right and sometimes they'll be wrong.

Most of us do so with a fairly positive mindset. It's not about symptoms obsessing, it's about trying to be as well as we can.

However, we also bear in mind it is a fluctuating condition and no matter what we do we can't be in total control. The season change, the clocks go forward & back, the underlying condition is fluctuating.

There's a difference between observation and obsession. I reckon most people who've been ill for a while observe. Maintaining obsession takes a lot of energy. The flip side of being obsessive, instead of patient observation, is that should an improvement occur, however transient, there's a tendency to attribute it to whatever the person did at the time, even though it might only be a remission that occurs as part of the fluctuating nature of the condition.
 
Invisible Woman said:
I agree with what you've said but that wasn't quite how I read the post you responded to.

In the absence research and answers people are bound to try and make sense if things. Sometimes they'll be right and sometimes they'll be wrong.

Most of us do so with a fairly positive mindset. It's not about symptoms obsessing, it's about trying to be as well as we can.

However, we also bear in mind it is a fluctuating condition and no matter what we do we can't be in total control. The season change, the clocks go forward & back, the underlying condition is fluctuating.

There's a difference between observation and obsession. I reckon most people who've been ill for a while observe. Maintaining obsession takes a lot of energy. The flip side of being obsessive, instead of patient observation, is that should an improvement occur, however transient, there's a tendency to attribute it to whatever the person did at the time, even though it might only be a remission that occurs as part of the fluctuating nature of the condition.
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Yes, I agree with everything you've said. Looking for patterns is absolutely natural. In fact as humans we often see patterns that aren't there.

And the point about obsessing over symptoms — (i) i think there is (recent?) evidence this is no more significant in ME/CFS than other illnesses or in the healthy population. But (ii) it does exists, and it can totally zap your energy.
 
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