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

[Adrian]

He'd been in the press with his earlier personal story blogs too though. He was then promoting other views based on his personal story.

I was never interested enough to read his earlier blogs. But I did get the impression that he was jumping around ideas looking for the latest thing - perhaps its a good thing he didn't see stuff on spinal surgery.

trying to be understanding of before making personal criticisms of him

To me its about making professional criticism not personal - and I guess some of this comes as to whether he is speaking as Paul from Liverpool or Prof Garner - But Paul from Liverpool doesn't get to write BMJ blogs and appear on newsnight.

I think he's behaved in some unreasonable ways but I can see why from his perspective a lot of ME/CFS 'advocacy' could now seem like a poisonous and destructive movement that needs to be fought against.

We should remember what his is doing is advocay and patients see it as poisonous as there is an underlying message in what he says that people could recover if they tried (and a message that when he says it as a medical professor seems to carry more weight).

This is something that some others in science also believe, and it has an important impact on our lives. It's easy to point to examples of misinformation and prejudice that encourage this narrative but and I also think it's worth reflecting on what we could do to lessen that concern, and what patients can do to play into it.

I think this is a problem as stories and prejudice have build up over the years. One tactic is to be quiter and perhaps more directive in advocay but I don't think that works given the disperate nature of the community. A different one is to be seen to have a voice but to try to keep criticism polite and to the points of the argument - and this is what I would favour - not all criticism will follow this but if a reasonable amout of it is perhaps it reduces more personal comments. Attacking peoples arguments, can ofcourse, be taken very personally but if the arguments aren't strong then they are open to attack.

I the end I suspect the other scientists who talk about attacks and believe it aren't going to suddenly work on ME - I think it reflects a long term prejudice. The problem is how big this group seem to be an that they hold positions of power. Perhaps the other question is how can we stop younger scientists developing the same prejudice.

 

[Esther12]

To me its about making professional criticism not personal - and I guess some of this comes as to whether he is speaking as Paul from Liverpool or Prof Garner - But Paul from Liverpool doesn't get to write BMJ blogs and appear on newsnight.

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.

I think this is a problem as stories and prejudice have build up over the years. One tactic is to be quiter and perhaps more directive in advocay but I don't think that works given the disperate nature of the community. A different one is to be seen to have a voice but to try to keep criticism polite and to the points of the argument - and this is what I would favour - not all criticism will follow this but if a reasonable amout of it is perhaps it reduces more personal comments. Attacking peoples arguments, can ofcourse, be taken very personally but if the arguments aren't strong then they are open to attack.

I the end I suspect the other scientists who talk about attacks and believe it aren't going to suddenly work on ME - I think it reflects a long term prejudice. The problem is how big this group seem to be an that they hold positions of power. Perhaps the other question is how can we stop younger scientists developing the same prejudice.

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:

Yes, but I think that any inaccurate or exaggerated criticism is likely to be unhelpful here.

It's easy to imagine someone looking to discredit advocates looking for heated responses to this tale for a follow-up piece, and I'm sure that some patients will be happy to oblige.

I got replies like:

Im happy to oblige, cause this gaslighting is not an acceptable (im not talking about personal insults).

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.

 

[Tia]

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!

 

[chrisb]

When they go low, we go high'!

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.

 

[rvallee]

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.

 

[dave30th]

That he never actually names it is frankly odd.

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.

 

[Midnattsol]

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.

It's not the first time he's showed up. Based on who wrote the article I don't really see the point in complaining (they have written if not all so nearly all of the terrible articles about ME in Dagbladet).

 

[rvallee]

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.

Won't the majority with the side effects of covid-19 recover on their own after a while? Why is it necessary to seek out Norwegian alternative therapists?

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

 

[Sly Saint]

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..

 

[SNT Gatchaman]

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.



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

 

[Hutan]

Brain and body are connected, there isn't much dispute about that

Years of medical education...

 

[TiredSam]

Apparently the brain is connected to the body. Who knew?

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

 

[Snow Leopard]

Years of medical education...

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

 

[Hoopoe]

The book highlighted by Garner: The Psychology of Physical Symptoms

Physical symptoms are fascinating phenomena to examine. We all experience them, use them as signals to guide our behavior, and usually assume that they accurately represent underlying physiological activity. At the same time, we implicitly know that bodily sensations are often vague, ambiguous, and subject to a variety of interpretations. It is not surprising, then, that there is often a disparity between what we think is going on in our bodies and what is objectively occurring. In short, phenomena such as physical symptoms are the stuff of psychology. My own research into physical symptoms started by accident several years ago. In a hastily devised experiment dealing with the effects of noise on behavior, I had to write a post-experimental questionnaire that would be long enough to allow the experimenter time to calibrate some equipment for a later portion of the study. I included some physical symptoms on the questionnaire as fillers. The experiment was a total failure, with the exception of the symptom reports. People's perceptions of symptoms were easily influenced by our manipulations, even though their actual physiological state had not changed. And so began the present inquiry. Despite the pervasiveness, importance, and sheer amount of time and money devoted to discussing and curing common physical symptoms and sensations, very little empirical work has been devoted to examining the psychological and perceptual factors related to sensory experience. Occa sional papers have tested a specific theory, such as cognitive dissonance, wherein physical symptoms served as an interesting dependent measure.

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.

 

[Mithriel]

People's perceptions of symptoms were easily influenced by our manipulations, even though their actual physiological state had not changed.

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.

 

[Wonko]

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;

Dear Member/Friend
Chris suggested another two websites with techniques that may help with ME:
...................................
Breathworks Mindfulness for Health course
https://www.breathworks-mindfulness.org.uk/mindfulness-for-health
I am currently doing this course with them online via Zoom at the moment. It isn't ME specific but may be of use for people who want to explore mindfulness more as it's geared to those with a chronic condition. I am finding it very useful.
London Clinic of Nutrition
https://londonclinicofnutrition.co.uk/treatments/chronic-fatigue/
This was suggested to me by a friend; however, I have not had any experience of them.
It was great to catch up at the meeting.
Best wishes,
Chris

‐‐‐‐‐‐‐ Original Message ‐‐‐‐‐‐‐
On Thursday, 7 October 2021 15:01, Beds ME Support Group <bedsmesg@gmail.com> wrote:
BEDFORDSHIRE M.E. SUPPORT GROUP




Dear Member/Friend




From time to time I send to everyone some links to websites offering treatments that may be of interest. I must emphasise that we don't recommend or approve any treatments, but some of our members have used these techniques, some have found them helpful, some harmful, some of no effect. All the websites have some free material, particularly Alex Howard's. All offer paid-for treatment plans, some of which are very expensive (LP). Some have local practitioners (Perrin), some you can do at home (Gupta).

Alex Howard - The Optimum Health Clinic (and some other organisations)
https://www.theoptimumhealthclinic.com/



Perrin Technique

https://theperrintechnique.com/



Gupta Program

https://www.guptaprogram.com/



The Lightning Process

https://lightningprocess.com/








Best wishes





John Chisholm


----------------------------------------------------------------------------


If you do not wish to receive further information by email from Bedfordshire M.E. Support Group, please reply to this message, replacing the subject line with UNSUBSCRIBE.

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.

 

[Sly Saint]

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

http://bedsme.blogspot.com/

 

[Trish]

Oh dear. With friends like these, who need enemies. At least they give a half hearted warning that some find them harmful. I'm afraid my local group is similar. I gave up on them ages ago. I just don't have the energy to try to educate people who don't want to know. That's why we really need the new guideline.

 

[rvallee]

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.



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

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.

 

[Barry]

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:

Physical symptoms are fascinating phenomena to examine. We all experience them, use them as signals to guide our behavior, and usually assume that they accurately represent underlying physiological activity. At the same time, we implicitly know that bodily sensations are often vague, ambiguous, and subject to a variety of interpretations. It is not surprising, then, that there is often a disparity between what we think is going on in our bodies and what is objectively occurring. In short, phenomena such as physical symptoms are the stuff of psychology. My own research into physical symptoms started by accident several years ago. In a hastily devised experiment dealing with the effects of noise on behavior, I had to write a post-experimental questionnaire that would be long enough to allow the experimenter time to calibrate some equipment for a later portion of the study. I included some physical symptoms on the questionnaire as fillers. The experiment was a total failure, with the exception of the symptom reports. People's perceptions of symptoms were easily influenced by our manipulations, even though their actual physiological state had not changed. And so began the present inquiry. Despite the pervasiveness, importance, and sheer amount of time and money devoted to discussing and curing common physical symptoms and sensations, very little empirical work has been devoted to examining the psychological and perceptual factors related to sensory experience. Occasional papers have tested a specific theory, such as cognitive dissonance, wherein physical symptoms served as an interesting dependent measure.

[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