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

Joan Crawford said:
Hello, I thought about not commenting as I too felt disquieted like others. However, the more I thought about it the more I felt I wanted to get out there what I was thinking and the harm that this article can do from his place of authority and power given who he is. So, I have just posted this on the BMJ blog comments section. It's in moderation so who knows if it'll ever appear. So, FWIW:

Dear Dr Garner,

It is excellent news that you have recovered from your debilitating symptoms after Covid-19 infection. This is the usual and most common outcome from post-viral fatigue states which generally resolve between 6 to 24 months duration post infection. From a longitudinal perspective, for example, Dubbo study (Hickie et al., 2006)).

I was, however, rather taken aback by some of your statements. For a man of science and medicine to state, for example, “I started telling my friends that long covid was a metabolic disease that had damaged my mitochondria.” It would perhaps be illuminating to your medical colleagues, fellow long haulers post-COVID-19 and the BMJ readership where you obtained objective evidence for this disease and abnormalities and by what testing method was used to demonstrate such? This would be potentially of great value in figuring out, along with monitoring the progression and recovery from, such states if you could please share.

As a Counselling Psychologist who works with patients with long term medical conditions in and outside of the NHS, I was amused to see that you “… started unconsciously monitoring signals from my body.” I wondered how this could be achieved. By its definition, the unconscious is not available for introspection or therefore self-monitoring.

I would have hoped that given your medical credentials and access to colleagues who would have reassured you that recovery in the medium term was your most likely outcome. I suspect your visit to the CFS/ME specialist did just that – priming you to the idea that recovery was likely. I was cheered to see that you were able to take good advice in your early illness from patients who have not been so fortunate as yourself and who have not had positive outcomes: to rest and pacing yourself initially. I am glad that you were able to receive treatment for your anxiety; however, I am baffled why you felt the need to seek care from an unqualified, non-clinically trained student in Norway? There are plenty of clinically qualified psychologists, with experience of working with post-viral patients, close to home, in the NHS, to support you.

Reading the description of the therapeutic process you engaged in (details of which are sketchy to say the least) I am struck by your absence of critical analysis of both it and the evidence base for it, or lack of. Surely this is an important aspect of credibility and essential if a professional is to be taken seriously by peers and professionals? Belief in one’s recovery (“I suddenly believed I would recover completely.”) while presenting woo-hoo pop psychology theories with no objective demonstration of cause and effect, are you really suggesting that your scientifically trained colleagues buy into this? The conformation bias and other well-known and studied phenomena I would hope would be a key part of your line of work (Director of the Centre for Evidence Synthesis in Global Health and Co-ordinating Editor of the Cochrane Infectious Diseases Group). So, while you had an inclining that all that was ailing you was not purely biomedical you have found your way out of the horrid situation that you were in. You have attributed that to your change in mindset, pushing heroically through your symptoms and “I did this by listening to people that have recovered from CFS/ME.” In the former two scenarios you show extreme bias by not considering the more likely hypothesis that you were naturally recovering anyway (supported by longitudinal evidence in other viral conditions) and having overcome some anxiety and fear avoidance you are able to recover your health. Why dress it up to read like a moral tale and disparage a completely different patient group to boot? And since no one has a reliable, objective test for CFS/ME nor for long-covid it is scientifically incorrect to state or to demonstrate objectively the later. This is at best a tentative hypothesis, a belief of which there are equally valid, alternative explanations. Ironically, the recently updated ME/CFS guidelines by NICE have removed the existing, poor quality evidence base for the approach you took, for ME/CFS, as having low or very low quality. There is evidence that these approaches, as you are advocating, can cause long term harm to people with ME/CFS, which I have borne witness to time after time in my clinic (Kindlon, 2017), with resultant catastrophic physical and psychological consequences. Many people with ME/CFS spend their time seeking “joy, happiness, humour, laughter…” This makes no difference to their condition – but helps them to cope. People with ME/CFS are not so fortunate to be able to overcome their fear of exercise, as they are not fearful of exercise, but exercise intolerant, which is something that can be objectively demonstrated using the two-day cardiopulmonary exercise test or 2-day CPET. That you seem unaware of this consistent finding in patients with ME/CFS is profoundly disquieting.

As a leader in your field in a well-regarded UK institution and a position of responsibility and authority I hope in time that you can reflect on what you have written in this blog. Perhaps if you can take the time to digest how biased your thinking currently is. Perhaps a step back is needed for you to look at this in a more scientific manner. Your blog is I suggest misleading and potentially harmful to patients with ME/CFS. I put it to you that this blog will cause upset, and unnecessary distress by overreaching and conflating your subjective and biased experiences with another patient group, whilst simultaneously not backing up your case study with objective data. All that is being presented here in your blog is a biased talking shop – one that appears to be disparaging a whole group of patients, which I find shocking and irresponsible for someone in your position.

I wish you sincerely all the best in your continued recovery and retention of health and vitality.

Joan Crawford

Chartered Counselling Psychologist
Click to expand...

:emoji_clap::emoji_clap::emoji_clap::emoji_clap::emoji_clap:

*Mic drop*
 
It has occurred to me that there is a way of potentially explaining PGs recovery or remission-only time will tell which it is. Whether or not it is the correct interpretation is an entirely different issue.
.
The relapsing/remitting form of the condition can present very sudden switches. The physical changes can occur before the psychological awareness kicks in. Sometimes it can catch you unaware. It could be that his decision to get out of bed and exercise himself to health was prompted by his body suddenly being able to undertake the activity necessary. The "decision" was just the ex post facto gloss.

The reversal of states may be equally sudden, and then one tends to deny the change for as long as possible.
 
chrisb said:
It has occurred to me that there is a way of potentially explaining PGs recovery or remission-only time will tell which it is. Whether or not it is the correct interpretation is an entirely different issue.
.
The relapsing/remitting form of the condition can present very sudden switches. The physical changes can occur before the psychological awareness kicks in. Sometimes it can catch you unaware. It could be that his decision to get out of bed and exercise himself to health was prompted by his body suddenly being able to undertake the activity necessary. The "decision" was just the ex post facto gloss.

The reversal of states may be equally sudden, and then one tends to deny the change for as long as possible.
Click to expand...

It certainly discounts the deconditioning theory and the need for post viral people to go from sedentary to active through graded exercise as their bodies have become "sensitive"
 
chrisb said:
The relapsing/remitting form of the condition can present very sudden switches. The physical changes can occur before the psychological awareness kicks in.
Click to expand...

This has happened to me. Each time I went into remission I'd experienced a growing conviction that I could start doing things. I'd started the recovery process, and then become aware of it. And on a subjective level it can feel – quite strongly in some moments – as if it's a change of attitude.

The difference was that (a) I'm not a doctor, (b) I understood what was happening anyway, and (c) I didn't try to impose it on anyone else or ascribe it to anything I'd done. I just recovered.

A similar thing can even happen after a bad cold; as soon as the symptoms start fading, you wonder if you couldn't have tried a bit harder to get on with some work, rather than sitting in a miserable heap and grumbling. Our memory of pain and discomfort is famously short-lived.
 
Mithriel said:
Again my memory has failed me, but I believe that there was a discussion on an ME forum about whether having another infection can make ME a bit better as well as worse. If the immune system is revved up and people are forced to rest it could happen.
Click to expand...

I get the occasional very short-lived cold (a day or a day and a half and then it's gone). During those times I feel better and can think better. The same effect has been noted on thyroid forums where many of the members have one or more autoimmune diseases.
 
Jonathan Edwards said:
Sorry, but this seems to me out of context @Esther12. No competent physician is going to go through the series of ill-informed belief states Garner was obviously engaging in right from his early tweets. We are all taught about the reality of post-viral fatigue and have seen enough patients to have a grasp of it. To fall into the beliefs indicates that he must belong to a medical subculture familiar to me since some of my peers joined it in the 1980s that thinks that most problems seen in general practice are based one 'mind-body interactions'. Essentially these are people who could never cope with science proper and slipped into shamanism early on. When academic departments of primary care were set up these people filled them in droves. Greenhalgh is the same. The PACE crowd are the same.

This is not the frailty of the situation of the man in the street faced with the unknown. It is the incompetence of someone in medicine who does not have the intellectual capacity to do the job.
Click to expand...

Is that a bit 'no true Scotsman'? - this 'subculture' seems pretty large.

Garner's professional and public role adds a whole extra layer of complexity, but at this point my instinct is to be sympathetic to someone who has been through a bizarre experience. He seems to have taken an openly personal and emotional response through his experience, and that makes it pretty difficult to talk about his broader intellectual capacity imo. Lots of people can have odd views about their own lives but then do solid work in their professional lives.

Also, just pragmatically, I feel as if those unaware of the history of things like Recovery Norge will miss a lot of the problems with Garner's new blog. It could be that Garner doesn't entirely understand it (given that he's previously written of the problems of 'institutionalised prejudice' around ME/CFS, a failure to have dug into that would be bad, though in an unsurprising way). I'm not sure how harsh criticism of Garner's blog is likely to seem to his colleagues, who will largely also not be aware of this history.
 
Esther12 said:
Garner's professional and public role adds a whole extra layer of complexity, but at this point my instinct is to be sympathetic to someone who has been through a bizarre experience. He seems to have taken an openly personal and emotional response through his experience, and that makes it pretty difficult to talk about his broader intellectual capacity imo. Lots of people can have odd views about their own lives but then do solid work in their professional lives.
Click to expand...


https://cidg.cochrane.org/news/co-o...rner-discusses-his-experience-having-covid-19

Well Covid unwell or no, Professor Garner has been making ample use of his experiences from quite early on despite his ''severity' and unwellness'.........

Paul’s core blogs
.......and he has been rather putting himself out and about a bit it would appear.
He does seem to like the attention. He obviously is skilled in getting a message out there....
I wonder how many of these entries were commissioned and paid, how many were freely volunteered?





Interviews and articles related to Paul’s Covid-19 experience .......


 
Last edited by a moderator:
Kalliope said:
A clever friend found a Facebook post from November 25th 2020 of Garner in Grenada.
When googling Dengue and Grenada some local newspaper articles from September 2020 comes up about a significant jump in Dengue cases.
Click to expand...

Initially Grenada controlled cases with a lockdown. After an exponential increase in cases in the first half of December 2020, the country applied a partial lockdown to bring it under control again. Arrivals from the UK are currently banned. I'm not saying that Garner caused the Grenada outbreak of course, but people who travelled there at that time certainly did. Grenada is a small country with limited medical infrastructure and an economy that was struggling even before Covid-19.

Screen Shot 2021-01-28 at 7.06.01 AM.png
https://www.worldometers.info/coronavirus/country/grenada/

An evidence based medicine and infectious disease specialist (who has no excuse of ignorance) who goes on an international holiday to a distant vulnerable country during a global pandemic of a highly transmissible disease that causes long term harm, and posts about his holiday on social media, actively encouraging others to also travel, is likely to have particular characteristics.

Those characteristics seem consistent with such a person (who also has a close family member with ME/CFS and the benefit of personal advice from sensible experts like Charles Shepherd) suggesting that he overcame a post-viral fatigue syndrome by moral fortitude.

I agree, @Esther12, that the characteristics don't necessarily include a lack of intrinsic intelligence. Smart people can show a remarkable ability to dismiss both facts and impacts on others when pursuing admiration and a sense of superiority.
 
Last edited:
The way we think PG could have been "brainwashed" by LP (like) approaches to think ME was psychological, he might actually think the ME community had brainwashed him into believing ME, or rather his pvfs, was physical?

Not an excuse but it would explain his harsh tone.

I think no matter what your profession is, when something deeply traumatic is happening to you the mind is human first and tries to make sense of it and regain control/sovereignty.
 
It seems to me that certain medical people have not woken up to the fact that the habit of doctors dissing patients while communicating in what they think is their professional private space is no longer tolerable in the internet age. It was never justifiable but at least nobody much noticed before.

Garner is engaging in the sort of jokey self-congratulatory story that people used to relate at medical dinner parties. You do not translate that to the e-pages of a medical journal.

I am sorry but I think his behaviour is completely inexcusable. Yes, personal catastrophes can be hard to handle, I have had quite a few, but coming to terms with them has never involved putting other people's lives in jeopardy.
 
Hutan said:
An evidence based medicine and infectious disease specialist (who has no excuse of ignorance) who goes on an international holiday to a distant vulnerable country during a global pandemic of a highly transmissible disease that causes long term harm, and posts about his holiday on social media, actively encouraging others to also travel,...
Click to expand...
It's not a good look, is it.
 
You must log in or register to reply here.
Back
Top Bottom