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

I feel like people are being close-minded about the possibility that Garner really did have something that is very close to or the same thing ME/CFS is, if only for a several months. His bizarre interpretation of what led to his recovery is a distraction from the important observation that he clearly described PEM in his earlier posts.
 
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strategist said:
I feel like people are being close-minded about the possibility that Garner really did have something that is very close to the or the same thing ME/CFS is, if only for a several months. His bizarre interpretation of what led to his recovery is a distraction from the important observation that he clearly describes PEM.
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I wasn't thinking that. It does seem that there are people with post viral chronic illness with ME type symptoms and a proportion get better (partiularly in the first year or two). They will often meet the diagnostic criteria (with the 6 months) etc so perhaps we should just say ME. But I wonder if we need some better terminollogy and study to back this up to see and talk about whether there is a real difference and to give the newly diagnosed a more accurate picture.

It does seem to me that Long Covid does present an opportunity to study some of these issues and I think there are observation projects.

Perhaps the question we need to ask ourselves is whether we see ME as a longer term chronic illness or an illness defined by the 6 month rule in things like the CCC.
 
Adrian said:
There is a well thought out blog here on the subject here
https://www.healthcarehubris.com/po...er-s-change-of-heart-on-long-covid-and-me-cfs
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Really excellent blog by someone calling themself 'Nemesis' who identifies themself as a former clinician and scientist. It describes accurately the changes seen over the series of articles by Garner, and focuses particularly on the complete change of direction in the most recent one, discussing the wider repurcussions of the reinforcing of the BPS approach by such a prominent individual.
 
Adrian said:
I wasn't thinking that. It does seem that there are people with post viral chronic illness with ME type symptoms and a proportion get better (partiularly in the first year or two). They will often meet the diagnostic criteria (with the 6 months) etc so perhaps we should just say ME. But I wonder if we need some better terminollogy and study to back this up to see and talk about whether there is a real difference and to give the newly diagnosed a more accurate picture.

It does seem to me that Long Covid does present an opportunity to study some of these issues and I think there are observation projects.

Perhaps the question we need to ask ourselves is whether we see ME as a longer term chronic illness or an illness defined by the 6 month rule in things like the CCC.
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I have posted about this several times eg
https://www.s4me.info/threads/chron...n-lubet-july-21-2020.15999/page-3#post-275757

Ironically in the Oxford criteria definition they introduced PIFS as a distinct diagnosis from CFS
(post-infectious fatigue syndrome), https://www.s4me.info/threads/oxford-criteria-should-papers-using-it-be-excluded.2218/

not sure why they created another name for PVFS unless it was to cover all infections not just viral, or because PVFS was considered synonymous with ME.
 
The PIFS category required evidence of the initial infection (patient self-report not considered sufficiently reliable) with laboratory confirmation. Also had to meet Oxford CFS criteria and have syndrome present for 6 months post-infection onset.
 
Blog

Read Paul Garner

If you want to understand ME (and I won't blame you if you don't want to), you should read Paul Garner's piece in the BMJ, and then you should read the comments after it.

Paul Garner, an experienced and respected professor at the Liverpool School of Tropical Medicine, specialising in infectious diseases, has written about his recovery from long Covid. He also states that he met the criteria for ME/CFS. He used positive thinking, most likely in the form of the Lightning Process, though he is unspecific about that. He then claims to have "looked down the barrel of the ME/CFS gun and disarmed it", a sentence he is quite proud of, as he uses it in his tweet signposting the article.

Not surprisingly, he has been met with consistent contradiction from ME sufferers and specialists who know what they're talking about. What was noticeable to me is the measured nature of the responses. There is anger, not surprisingly, and there is some robust language, not surprisingly, considering that he has just told millions of people that their illness is all in the mind. He is met with polite, albeit vigorous, rebuttal from people with ME, from their carers and from medical professionals who work in the field. I am deeply impressed with everybody who replied to him, because it feels so degrading to have to say, yet again, ME is real. It is not just in the mind, it is not something you get over by having a positive attitude, any more than a broken leg is. Hope can help, but it is not a cure. And when you've hoped for twenty years, and you still don't have a cure, hope feels a bit bankrupt.
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https://acomfortableplace.blogspot.com/2021/01/read-paul-garner.html
 
From: https://www.healthcarehubris.com/po...er-s-change-of-heart-on-long-covid-and-me-cfs:
One of the most troubling comments in this piece is one used by Prof Garner on social media to sum up the article: “I feel that I have looked down the barrel of the ME/CFS gun and disarmed it”. I won’t focus on the disconcerting undertones of machismo and grandiosity, or the typically able-bodied tendency to describe illness with war-like rhetoric (which Prof Garner appeared to find unhelpful in a previous piece). Rather, I’m interested in the suggestion from Prof Garner that he (and there seems to be a lot of ego here) has been able to prevent himself from developing ME/CFS, or prevent his ME/CFS like illness from deteriorating: “I disarmed it”. What does that say about those people who have lived with ME/CFS , or other disabling chronic illnesses, for years and decades? In particular, because Prof Garner is saying that he “disarmed” the ‘ME/CFS gun’ through exercise and essentially channelling the power of the mind. As a disabled person with ME/CFS (with some research and clinical experience in ME/CFS), I respectfully find this statement obnoxious and offensive. But it would appear that the greatest insult to the ME/CFS community (and a divisive one at that), has been left for the finale:

“I have recovered. I did this by listening to people that have recovered from CFS/ME, not people that are still unwell; and by understanding that our unconscious normal thoughts and feelings influence the symptoms we experience”
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Reading the above made me realise the similarities between what PG wrote and what Fiona Fox wrote in that bizarre article when she was a leading member of the Revolutionary Communist Party (see https://www.s4me.info/threads/artic...he-revolutionary-communist-party-c-1996.3452/) eg Fox: “I do feel that being one of the few people in the world who can really understand imposes a certain burden and definite isolation ... quite frankly if it is a choice between carrying the burden of RCP politics and ending up like my old friend Carol [who has ME] there's no choice involved.”

The same hubris, the same cultish language. And Fox is reported to have a sister with ME too. Almost makes me wonder if she helped him write it.

Another thing that struck me was PG’s implied criticism of people with ME for sending him “unsolicited emails”. Not only are these the same people he was praising and thanking in previous blogs, but he then goes on to attribute his recovery to a student who sent him an unsolicited email promoting what appears to be a pseudoscientific cult.

[Correction: PG was not sent an unsolicited email by the student – he says he was put in touch with the student having cast around his “international network of medical evidence specialists for help”.]
 
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Binkie4 said:
View attachment 13190 Clare Gerada has just been on BBC news channel again. Thankfully nothing about long covid or ME, just about a technological development, an app attached to a camera on an iphone to monitor basic obs- to replace a live consult with a GP. She was there to discuss its uses.

I think they repeat the clip each hour- about 46 minutes past the hour. I saw it an hour ago out of the corner of my eye then it was just repeated.

Very popular GP with the BBC.
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My Tweet https://meassociation.org.uk/2013/0...are-gerada-to-attend-their-annual-conference/
Good2talk! Remember2013? Chair Royal College of GP invited to CPD-Accredited event to explain the effects on GPs & their patients of NHS reforms into the way LT conditions, particularly ME, are managed -“Infection, Immunity and Myalgic Encephalomyelitis
 
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Robert 1973 said:
Another thing that struck me was PG’s implied criticism of people with ME for sending him “unsolicited emails”.
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I am thinking he could, like many, be experiencing ongoing cognitive confusion. Or else he has zero comprehension of how his words might impact others. The above sentence bothered me personally. I reached out to him initially but was not insistent. He engaged with me and himself invited me to speak to his group about PACE. I never provided advice about how people with long-Covid should be treated except to suggest that applying PACE treatments willy-nilly to long-Covid did not seem justified. And yet I feel dissed and really pissed off by his suggestion that everything he heard was "unsolicited." It comes across as very ungrateful and very ungenerous to patients who reached out to help him when he was flailing.
 
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Adrian said:
I wasn't thinking that. It does seem that there are people with post viral chronic illness with ME type symptoms and a proportion get better (partiularly in the first year or two). They will often meet the diagnostic criteria (with the 6 months) etc so perhaps we should just say ME. But I wonder if we need some better terminollogy and study to back this up to see and talk about whether there is a real difference and to give the newly diagnosed a more accurate picture.

It does seem to me that Long Covid does present an opportunity to study some of these issues and I think there are observation projects.

Perhaps the question we need to ask ourselves is whether we see ME as a longer term chronic illness or an illness defined by the 6 month rule in things like the CCC.
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It would be a pity if Paul Garner's physicians did not collect and store samples of his blood, spinal fluid, microbiome, etc. during the phase of his illness where he met the CCC (though there's little reason to think they would have).

It might have been interesting to see how they compared to samples taken following his recovery.

I've been hoping that some group would do this on a large scale as a longitudinal study. If data were collected on a large enough number of post-viral ME cases, some of those people might recover like Professor Garner (even without adjusting their mental attitude). Maybe the results would be interesting, or maybe not, but comparing self-to-self seems like the ultimate control.
 
Forbin said:
I've been hoping that some group would do this on a large scale as a longitudinal study. If data were collected on a large enough number of post-viral ME cases, some of those people might recover like Professor Garner (even without adjusting their mental attitude). Maybe the results would be interesting, or maybe not, but comparing self-to-self seems like the ultimate control.
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I think their is a group in the US doing something. Also the Kings group who do the symtom tracker may be doing something (and it comes from the twins project nothing to do with the psych groups at kings) so something interesting may come up here.
 
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