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

I can see how you could want to split things like that, but I think it's difficult when what he has generally been speaking of is personal experience, though he was surely able to do so in the BMJ because he was a professor. I think that this context, and the history of the way some people have responded to him, now makes it more difficult to criticise him in a useful way, and particular care is going to be needed to avoid making things worse imo.

Additionally, I also think it would be useful to talk more about how harmful it can be when patients behave as badly as someone like quasar9uk does, but also milder problems with patients going beyond the evidence in their claims about those we criticise. I think that sometimes people can want to be supportive of other patients in a way that gets in the way of recognising that there are patients doing more to make life worse for other patients than some of the journalists or academics who we spend more time criticising.

There are always going to be people acting badly in any group and I'm not suggesting we can stop that, especially when around ME/CFS there is a lot of mistreatment, prejudice and uncertainty - all things likely to lead to people responding with counter-productive anger or in other misguided ways. I'm also sure I let my anger about real problems lead me astray sometimes, but some people don't even seem to see that as a problem and anything that enables that is going to hurt us. But I thought that a lot of people here ended up defending counter-productive approaches, taking an openly heated approach to Garner and expressing anger (of the sort I expect few would understand), so nine months later who is surprised by things like the Dagbladet article?

Back in January I was raising concerns, saying things like:

I got replies like:

Trying to change some of these attitudes amongst ourselves seems more worthwhile than criticising journalists on social media at the moment. As it is, it feels like a lot of the time we're busy marginalising ourselves.

 

In my opinion, Paul Garner's behaviour, whilst understandable on a personal level (scary illness in the midst of a pandemic could provoke all sorts of responses), is not appropriate on a professional level. I think our criticisms of him should stick to the science and I actually think this is one of the ways that we can stop younger scientists developing prejudices about pwME, as you say @Adrian

'When they go low, we go high'! as Michelle Obama says!

 

That saying might work well for Michelle Obama, but I'm not sure it works for a UK audience. A low tackle is perfectly legitimate. A high one might get the player sent off.

 

Regardless of everything, I have not seen a single supportive comment from a long hauler, most are saying the same things as us. Not out of a large sample, but high enough to be confident of a >95% (i.e. comfortably >20).

It's very rare to have universal consensus on anything. Chocolate doesn't have universal consensus. Neither do puppies. There are people who hate rainbows, even double rainbows. Because reasons. Also sometimes people just answer questions wrong, breaking the possibility of a consensus. Questions such as "do hats exist?", will sometimes not quite have a consensus. People are weird.

So you really, really have to be extremely wrong to manage this level of support... for your silence.

 

I have found this odd as well. But I agree that any more time spent thinking/talking about or discussing him is a waste at this point. I could have been using that time to write an article or clip my toenails. Garner will say what he will say and there is nothing anyone can do about it. In Norway, if this is the first time he's appeared, it might make sense for someone to send a letter or whatever. But in general life's too short to pay attention to Paul Garner.

 

More of a generic comment but goes to the heart of the issue. Of course there is no good answer for this, people pushing a "rehabilitation" model never acknowledge that natural recovery rates, for which no good explanation exists either, most likely explain every single one of their "benefits", given the complete lack of specificity or being able to demonstrate a cause-and-effect relationship. And, you know, the fact that every single trial has failed to demonstrate any firm evidence of a positive impact.

https://twitter.com/user/status/1438395731824492547


In a totally surprising move, Henrik decided not to answer this inconvenient question.

 

https://twitter.com/user/status/1443500786303049729


two things;
"It is blindingly obvious claims of benefit are based on flawed analyses of flawed studies"

like other trials/reviews I could mention that are sold as gold-standard evidence.

plus (although I do not support use of ivermectin).... I'm sure there must be anecdotal evidence of it's 'efficiency', ie one persons 'recovery' story.

pot,kettle..

 

An opportunity to agree with Prof. Garner! Apparently the brain is connected to the body. Who knew?

Read all about it. Latest research (1977) now seen to hold out hope for millions with Long Covid.

https://twitter.com/user/status/1446424955923714070


Not a lot of likes on this tweet so far I note.

 

That'll be what my neck's for then.

Just making good on my promise to pinch and use that remark:

Article and Documentary BBC: Long Covid: Early findings bring hope for diagnostic tests

 

Well you never know, I mean I'm pretty sure my head levitates above my torso, and connects wirelessly.

 

The book highlighted by Garner: The Psychology of Physical Symptoms

https://www.springer.com/gp/book/9781461381983

This sounds like the criticism raised against CBT/GET studies... not sure why Garner thinks this supports his ideas.

 

It is all very well feeling that this is justification for manipulating people to not think their symptoms are going but the body has evolved symptoms like pain and nausea to protect against further damage. Ignoring pain in your shoulder would kill you if it is a sign of stomach or oesophageal cancer.

An article from years ago talked about marathon runners being able to run a hill at the end of a race if they knew it was there but not if it took them by surprise. That and other examples showed that people could do more even if they felt fatigue (CFS was specifically mentioned)

The authors also spoke about professional cyclists who used cocaine to combat fatigue and how some of them died because they kept going beyond their bodies capabilities.

The researchers seemed to have no awareness of the contradiction or that CFS could be a protecting people form damaging consequences of underlying disease.

This is why the BPS theories are so damaging. The underlying assumption is always that no disease exists and that has not been shown at all.

 

I'm not sure where to put this, but here seemed to fit, sort of, in a very shaky way;

Probably due to both the NICE pause, and PG, my local ME group has started sending dangerous turds to my email;

They have in the past sent out emails with various unhelpful, but 'free' information, but now it seems an onslaught of the very things that the new guidelines specifically mention as bad are being pushed.

I am only a member because I was pushed to join several years ago, once I was added to their email list and could see what line they were pushing, the administrations mindset, there didn't seem any point in try to attend (even on zoom as it's been for awhile now - they used to have meetings in really loud and busy pubs and cafes - not ideal for most pwME, or me) or communicating with them.

But, in the last few months, so much worse.

 

Bedfordshire M.E. Support Group is affiliated to the National organisation:
Action for M.E. http://www.actionforme.org.uk/

http://bedsme.blogspot.com/

 

Way too new and unproven. I only take medical advice in scroll form.

Though it's a bit odd that he keeps trotting out stuff from decades ago when there is supposed to be this huge body of evidence since then. How odd.

 

The blurb of this book is rather interesting:

[my bold]

Superb confirmation of one of the major biases in PACE etc - that self-reporting of physical systems can be readily manipulated by investigators.

https://www.springer.com/gp/book/9781461381983