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

Invisible Woman said:
I have been pondering the quote "I feel that I have looked down the barrel of the ME/CFS gun and disarmed it".
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I think it's a very apt analogy. As far as I'm aware (and anyone who has done military training, in Sefton Park or elsewhere, please feel free to correct me), the correct way to disarm a gun is not by giving it a hard stare. The fact that PG thinks he can do this shows a worrying level of confidence in his own magical thinking. At least he's consistent.
 
"I feel that I have looked down the barrel of the ME/CFS gun and disarmed it"
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The imagery of it. Of all the analogies he could have used, why choose that one? Is that really how he sees himself? Oh the bravery, the heroism, standing fast against all the odds, so tough, so fearless. What an example to us all. And to combine those noble characteristics with unwavering positivity, if anyone deserved to get better, this marvellous chap did. What an example to us all. He puts us all to shame really.

In fact I'm sure Wesseley could get him a job teaching gulf war veterans how they should have stared down the barrel of a gun properly to avoid gulf war syndrome, and if they heed his advice and do it the right way they'll get better. If they don't, they'll only have themselves to blame, of course.
 
TiredSam said:
Oh the bravery, the heroism,
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Oh the irony.....

Of how someone who now believes themselves to be recovered (& I genuinely hope for his sake he has & it's not just a remission) can freely use such imagery without being accused of threatening anyone whereas those of us stilled mired in ill health have to choose our words far more carefully lest we seem to be threatening someone, somewhere.
 
Garner still has the opportunity to put things right if he uses a bit of sense and objectivity.

I can appreciate the thoughts of having ME is very scary. I am sorry to hear these unsolicited emails are seen as being harmful. I think he could do with being reminded that for some, those well intended emails may have meant the senders didn't get to wash or have a hot meal that day, or missed out on contact with a loved one. People made a significant sacrifice to save him from harm.

If he wants to move forward in a constructive way then perhaps he could question why people who are suffering from self limiting PVFS are left vulnerable to unnecessary uncertainty and in fear of long term health problems. Long term in this case being more than a year or so.

If decent research had been done and questions asked over the last 30 years it might be possible to identify who will develop ME and who will spontaneously recover. A year of poor health is horrible but nowhere near as horrible as 2, 3 or 4 decades. I mean biomedical research here not the type of psych "research" that we've suffered to date.

No. If Garner wants to blame anyone for what he may perceive as unnecessary anxiety and stress then he needs to look to the BPS crew. Without them stifling research and stigmatizing patients we might have a better idea of who will spontaneously recover, who won't and why.
 
MSEsperanza said:
Has this been shared yet?



Code: 
https://twitter.com/minnajohansson1/status/1354722100750245888

The Twitterer is:
Director Cochrane Sustainable Healthcare.
@CochraneSH
@CochraneSweden

(Apologies for just popping in.)
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Yeah Cochrane really looking like a clown factory here. No wonder medicine has completely stagnated at improving patient outcomes when the standards are this low.
 
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MSEsperanza said:
Has this been shared yet?

Code: 
https://twitter.com/minnajohansson1/status/1354722100750245888

The Twitterer is:
Director Cochrane Sustainable Healthcare.
@CochraneSH
@CochraneSweden

(Apologies for just popping in.)
Click to expand...

These people's thinking is so absurd. Garner is extolling mind-body dualism - the mind interacts with the body. It is there in black and white. And he helped to set up Cochrane it seems. Everything clunks into place. Cochrane always was a phoney outfit. Nobody should be surprised by what is spilling out now.

And I always thought that it was NICE that was dodgy and Cochrane that was nice.
 
MSEsperanza said:
Has this been shared yet?



Code: 
https://twitter.com/minnajohansson1/status/1354722100750245888

The Twitterer is:
Director Cochrane Sustainable Healthcare.
@CochraneSH
@CochraneSweden

(Apologies for just popping in.)
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What a lovely little group of mutual support... A few months ago Henrik Vogt was promoting Minna Johansson's BMJ article about her own long covid experience, in Swedish long covid groups.
Minna Johansson in BMJ said:
This phenomenon is not new or particular to our response to persistent post-covid-19 illness (or “long covid”). Indeed, it is only a new chapter in our inability to care for people with “medically unexplained symptoms,” with the medical complex primed to respond not with compassion, but either dismissal or prompt medicalisation.
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Woolie said:
Excellent find, @TiredSam!
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It was a reference in the wikepedia entry for Duration Neglect :)

Robert 1973 said:
He was actually put in touch with the Norway student having cast around his “international network of medical evidence specialists for help”.
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There's quite a heady mix brewing here. PG seems to have swallowed the BPS dogma hook line and sinker as a patient, and fallen for the attractive belief that he caused his own recovery (I wonder which side of the fence he'd be taking an even stronger stance on if it hadn't "worked"). As a "professional" he has shown a desire for publicity whether trumpeting personal anecdotes or giving "expert" advice, and a tendency to take a strong position on whichever side of the argument he happens to be on at the moment. Now that he's thrown in his lot with the BPS crowd he'll be wanting to impress his new pals, and that, combined with his love of publicity and the zeal of the newly converted, leads me to suspect that we will be hearing a lot more from him.

Those who are lucky enough to get better whilst they happen to be doing the lightning process often become instructors and take the message to others they "want to help" whilst taking advantage of the new career opportunity. I wouldn't be surprised if PG has greater things in mind.
 
MSEsperanza said:
Has this been shared yet?
In this blog, @PaulGarnerWoof challenges the mind-body dualism that permeates medicine today - I find it brave, useful and very important.
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(Apologies for just popping in.)
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There it is again. The use of the term "mind-body dualism" as a way of impugning those who believe any disease cannot be made better by thinking the right thoughts. Apparently, that's how these folks define "mind-body dualism" in our current, post-truth world.

1. Aren't you AWARE that the mind and body are connected and that can influcence the other:

2. Don't you KNOW that all diseases have a psychological component?

3. Don't you REALISE that correcting your thoughts can improve your health, whatever your disease?

4. Or are you just afraid of the STiGMA associated with psychological dysfunction?

My answers.

1. Aren't you AWARE that the mind and body are connected?
No, I'm not, because that statement is based on a poor understanding of what "the mind" is. The body is a physical entity, the mind is an abstract construct that refers to some of the mental and emotional products of the body's functioning (especially those of the brain, but also the whole CNS, endocrine system, and lots more). So they are not "connected", they are one and the same.

2. Don't you KNOW that all diseases have a psychological component?
No, they have a psychological component only when it can be shown that they do so. That component is likely to be small, because our ability to modulate the cognitive and emotional products of our body's functioning is extremely limited. Its likely that even many psychiatric illnesses don't have much of a psychological component - that is, no amount of retraining, therapy, or reeducation of your thoughts, feelings and reactions will lessen your symptoms in any way (e.g., psychosis).

3. Don't you REALISE that correcting your thoughts and feelings can improve your health, whatever your disease?
Since the thoughts and feelings are the product of your body's functioning, the best way to correct these is to fix the body (the health condition).

4. Or are you just afraid of the STiGMA associated with psychological dysfunction?
F**K off.
___________________

This post has been copied and following discussion moved to a new thread:Psychological therapies. Discussion thread.
 
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A selection of PG's words, helpfully summarized in @Valerie Eliot Smith's blog:

While pacing made sense initially, I became obsessive as the months passed in an attempt to avoid my symptoms. I started unconsciously monitoring signals from my body. I sought precipitating causes. I became paralysed with fear: what if I overdid it? I retreated from life. I started telling my friends that long covid was a metabolic disease that had damaged my mitochondria. I wasn’t depressed, but mentally low, and relapses were more common…….Seven months after the initial covid-19 I was referred to a CFS/ME specialist. The ME community sent me unsolicited emails about mast cell deactivation, biological causes of my illness, and told me to rest. [my emphasis]

I knew the symptoms were real, but somehow these pure biomedical explanations felt wrong. While waiting for the appointment, I cast around my international network of medical evidence specialists for help. I was put in touch with a PhD candidate in psychology from Norway who had completely recovered from post viral fatigue syndrome (CFS/ME) years ago and offered to share the recovery story. The story was very similar: no previous illness, no psychological problems, only long-lasting debilitating symptoms after an infection. I was asked, “are you open to the idea that you can have an impact on your symptoms with your conscious mind?” I thought back to an earlier experience in my 30s with being able regulate my tinnitus after quinine, and said yes, straight away.

This opened the door that led to my recovery. I learnt that our primitive and unconscious defence mechanisms against injury and infection in the brain and other parts of the body sometimes get disturbed, giving false fatigue alarms. A vicious cycle is set up, of dysfunctional autonomic responses being stimulated by our subconscious…….

I know ME/CFS is associated with a variety of viruses and possibly other factors too, and recognise that the postviral syndromes have a wide spectrum of clinical manifestations. My experience may not be the same as others. I feel that I have looked down the barrel of the ME/CFS gun and disarmed it…….

I write this to my fellow covid-19 long haulers whose tissues have healed. I have recovered. I did this by listening to people that have recovered from CFS/ME [sic], not people that are still unwell [my emphasis]…
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PG has clearly acquired a new vocabulary from his "international network of evidence specialists". In particular, he has learnt that ME patients are obsessive, paralysed with fear, "mentally low", send unsolicited emails, not open to ideas, stuck in a vicious cycle, and that those who have not successfully brought about their own recovery are not to be listened to.

So it looks as if, whatever advances are made on the NICE guidelines front and others, however much PACE is officially discredited, there remains a section of the UK medical establishment which refuses to budge an inch from their decades-old claims, and who at the end of 2020 still tell anyone who asks them that ME support groups are to be avoided and ignored, or they'll suck you in and brainwash you and you'll never get better. PG has been persuaded, and now believes that was initially duped by ME patients, their false beliefs and their stigmatism of psychology. Naturally he wants to warn others of the perils of listening to these dangerous people, because if you do you'll end up just like them, you'll never get better. Thank goodness somebody explained it all to him so that he was able to get better after all. What a narrow escape, and what a great story!

So one thing this saga has shown is that behind the scenes, no matter how discredited, the great and the good are still preaching this shit to whoever will listen. Today.
 
"I feel that I have looked down the barrel of the ME/CFS gun and disarmed it."
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Wasn't it Nietzsche who said, "When you look down the barrel of the ME/CFS gun and disarm it, the trite metaphor also looks into and disarms you"?

Probably not.


"I took just enough philosophy in college to screw me up for the rest of my life." - Steve Martin
 
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This post is written with tongue firmly in cheek, and is intended to be sarcastic, not taken seriously...

Many years ago I read that a treatment for syphilis that worked for at least some patients was giving the patient malaria to encourage long-lasting very high fevers. Once the patient had been ill for some period of time they would be cured of their malaria with the use of quinine.

It was observed that sometimes patients who developed high fevers were cured of syphilis[by whom?]. Thus, for a brief time malaria was used as treatment for tertiary syphilis because it produced prolonged and high fevers (a form of pyrotherapy). This was considered an acceptable risk because the malaria could later be treated with quinine, which was available at that time. Malaria as a treatment for syphilis was usually reserved for late disease, especially neurosyphilis, and then followed by either Salvarsan or Neosalvarsan as adjuvant therapy. This discovery was championed by Julius Wagner-Jauregg,[46] who won the 1927 Nobel Prize for Medicine for his discovery of the therapeutic value of malaria inoculation in the treatment of neurosyphilis. Later, hyperthermal cabinets (sweat-boxes) were used for the same purpose.[47] These treatments were finally rendered obsolete by the discovery of penicillin, and its widespread manufacture after World War II allowed syphilis to be effectively and reliably cured.[48]
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Source : https://en.wikipedia.org/wiki/History_of_syphilis#Historical_treatments

It occurred to me after reading Paul Garner's blog on the BMJ and hearing about him having dengue fever that perhaps he has accidentally discovered the magic bullet that gets rid of Long Covid, and maybe even ME. Nobel Prize for Garner perhaps?
 
Arnie Pye said:
Many years ago I read that a treatment for syphilis that worked for at least some patients was giving the patient malaria to encourage long-lasting very high fevers. Once the patient had been ill for some period of time they would be cured of their malaria with the use of quinine.
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On the flip side, sickle cell anemia has some protective advantage against malaria (mainly in very young children), which is why SCA is more prevalent in areas where malaria is endemic. It's an example of natural selection. https://www.cdc.gov/malaria/about/biology/index.html#tabs-1-3
 
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