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

[Robert 1973]

It's not "just" Garner's or somebody else's opinion scrolling past on a screen for a moment. It's not happening in a vacuum. It's all interconnected. Systemic.

Or as Garner wrote in his June 23 BMJ blog: “Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19.”

So he recognised the systemic or institutional prejudice – a very serious allegation for someone in his position to make – and then chose to side with those responsible for it, and to compound it.

[edited to add hyperlink to BMJ blog]

Also, on a personal story front, is it innately worse to imply that you improved your health by being positive rather than, for example, that your health was made worse by GET?

2 points:

1) Yes. As has been pointed out many time before on here, we should give far greater weight to testimonies of harm from interventions than testimonies of recovery. As @Barry once noted, the weight of evidence needed to demonstrate that an aircraft is safe to fly is necessarily far greater than the weight of evidence needed to ground it due to safety concerns.

2) There is no equivalence between Paul Garner (Professor of Tropical Medicine, Director of the Centre for Evidence Synthesis in Global Health and Co-ordinating Editor of the Cochrane Infectious Diseases Group) writing in the BMJ and some random, anonymous person on Twitter saying angry things in repose to him. Garner represents the institutions that employ him and his article would have been approved by the BMJ. Anonymous tweeters represent nobody other than themselves, and they don’t have the benefit of having their tweets vetted by an editor of a medical journal.

Although we disagree about some of this, I’m grateful to you for putting the counter arguments, @Esther12. I also agree that some angry tweets can be unhelpful and counterproductive. I’ve asked a couple of people to delete their responses to the clip I posted (nearly 60,000 views now), but most have been perfectly reasonable – and not a single person has tried to defend CG’s comments in my timeline. I also note that Frances Ryan’s (Guardian columnist) retweet of the clip in which she described CG’s comments as “absolutely chilling” has been liked over 1200 times and retweeted nearly 500 times.

 

[Sly Saint]

I also note that Frances Ryan’s (Guardian columnist) retweet of the clip in which she described CG’s comments as “absolutely chilling”

I have only followed the twitter discussion in as much as what has been posted here, but has anyone pointed out that Clare Gerada is Simon Wesselys wife? or has it just been assumed that people are already aware of the history?
(maybe a link https://me-pedia.org/wiki/Wessely_school might help give it some context)

• Conducting biological or physical tests is actively avoided
• Patients with Chronic Fatigue Syndrome or CFS/ME do not have an organic (meaning physical) illness[3][9]

• Dysfunctional illness beliefs are believed to exist in patients with ME/CFS[3][9]
• Fear of exercise is a behavior that acts as a maintaining factor in CFS, and prevents recovery[9]
• Patients can "recover" by adjusting dysfunctional beliefs and behaviors, and reversing deconditioning[9][7]

• The role of the physical symptoms of patients should be minimized, they are based on severe deconditioning (or exist only in the patients' beliefs)[3]
• Patients "simulate" muscle weakness[10]

• Patients who receive health insurance payouts or disability benefits are believed to have a lower prospect of recovery; "secondary gain" and assuming a "sick role" allow them to "manipulate" others, and are considered obstacles to recovery

 

[Mij]

Thank you @mango. That is a very eloquent expression of the harm Garner, Gerada and their ilk are doing. Perhaps you might post it on the Garner BMJ article responses if you have enough energy to do so.

100% agree. This was an excellent post by @mango

 

[rvallee]

Actually, in fairness, he did concede that his first hypothesis about ME (that it is a form of depression) was incorrect.

He never actually said it out loud, though. The "physical symptoms of depression" is by far the most common interpretation I see in the wild when physicians voice their opinion about ME. He could have come out and said it, it would have made some difference, especially if his followers echoed it. He never did, never will. Because he wants the conflation, it suits his purpose, just as Gerada and Greenhalgh are doing, pretending they aren't doing that. They want the confusion, the ambiguity. This ideology lives in parables and near-religious sentiments, it needs misinformation to stay alive.

 

[rvallee]

I could not pass the delicious irony:



The least self-aware rock of my tiger-repelling rocks collection is vastly more self-aware than this. Seems typical, Sharpe and Wessely do the same.

For easier viewing, not sure who the "skeptic" is:

 

[Sphyrna]

I was referring to the "LymeScience" twitter account, by the way. Generally, they're pretty good at refraining from passing judgment on equivocal issues, but.. yeah, taking Vogt at face value tells you all that you need to know.

 

[Joan Crawford]

100% agree. This was an excellent post by @mango

Top post @mango

Please do post on the BMJ blog if you want to. It's great

 

[Adrian]

Mm. I suspect it had not entered his head. He was wanting to pour out his new found faith in what he wanted to believe in.

I think this points out a real issue with the BMJ giving him a blog. I can see it is interesting to see over time how someones opionions change and how they get drawn into a 'faith' but the BMJ has given him a platform to push his latest believe with no regard to scientific validity. Being the BMJ their platform has an impact. I feel if this were a reality TV program (covering something other than ME) there would be a lot of criticism of how the reality tv program took advantage of someone going through a difficult situation.

 

[John Mac]

The Myth of The “Good” Disabled Person

ME and Long Covid
Of course, no-one who has ME wants another person to get it. It is a horrendous experience. But sufferers felt that they might start to be believed when a few high-profile doctors and academics got sick. With hindsight, that was a little naïve.

Especially with regard to Paul Garner Woolf, a professor at the Liverpool School of Tropical Medicine and Director at the Centre for Evidence Synthesis in Global Health. He was diagnosed with the novel coronavirus, but he never got better. Instead, he became gradually worse, becoming weak and out-of-sorts. He published a few articles on the British Medical Journal blog about his experiences.

‘One afternoon, I felt as though I had been drugged, and felt so heavy I thought I could not raise my arms from the bed. I knew the symptoms were real, but I needed to distract my brain from them. So I thought, let’s do it: I will either die or recover, I got out of bed and went to Sefton Park to join a military fitness session. It was fabulous, and the exercise pushed the aches and fatigue aside. I slept well and felt better the following day. I was back on track…

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.’

He betrayed the community. He perpetuated the myth that he was a good sick person, that he tried really hard to get better, so he did. Those kinds of beliefs are built-in to societal assumptions. A good disabled person is several things. They are not sexy. They are not rude, and they don’t swear. Their illness is visible. If they need a wheelchair, then they are in it 24/7. They fit into a nice little box. But that isn’t life.

 

[Trish]

The Myth of The “Good” Disabled Person

A pity there are a few mistakes in this article.
First, she has called Paul Garner 'Paul Garner Woolf'. I assume this may come from a misreading of his twitter handle: paulgarnerwoof
Second, she says he wrote 3 BMJ articles, when in fact he wrote 6, so she doesn't have the full story.
Other than that, the article makes a good point about society's judgement on those who are less fortunate and don't get better, and the claims of those who do that they did it through trying harder.

 

[Kalliope]

Sharing just to show how Garner's blog post is being used as an example for everyone.

 

[Wyva]

Do you really know it is more difficult for you or thousands of others than it was for Paul?

Uh, sounds like gaslighting to me. Even though poor guy even mentioned this is against the recommendation of the long covid clinic.

 

[SallyC]

Uh, sounds like gaslighting to me. Even though poor guy even mentioned this is against the recommendation of the long covid clinic.

I don't block many people on Twitter but Henrik Vogt is on that short list. He wrote some unforgivable abhorrent comments about a family that suffered the most horrendous M.E. related tragedy a few years ago. This is like a watered down version of a similar sentiment.

 

[Jonathan Edwards]

Perhaps the most damning indictment of the BPS bigwigs is that they are happy to cheer on the most cringeworthy of alternative mind-body practitioners.

 

[anniekim]

Hope I am not digressing too much but has anyone shared Gerada is still at it? She posted the above on 7 Feb. Then went on to defend saying the same incorrect statement as in her BBC interview in light of a recent - IMO badly headlined - article on CFS and ‘exercise’, tweet below, that she was sent. https://www.livestrong.com/article/13729946-chronic-fatigue-syndrome-exercise/

 

[anniekim]

Picture two didn’t attach in post above.

 

[rvallee]

Sharing just to show how Garner's blog post is being used as an example for everyone.

"He could do that after".

After what?

It's ironic that Henrik doesn't read what people write. Maneesh has been the peak example of calm stoicism and doing exactly what the BPS cult sells. If he'd bothered to read any of it, including the damn tweet he's spamming on.

And of course Garner wrote that exercise was the key: "back on track" after his military training (while having dengue fever, I guess? It's not as if the story is any clear). I guess Henrik didn't even read it? At least beyond checking for the buzzwords from the LP pamphlet.

 

[rvallee]

Love to show my inability to understand cause and effect, or what the word "cause" means, or how transitive properties work. Everything must be at one degree of separation and no further, if something is a cause but itself has a cause then only the proximate cause must count (as long as it promotes BPS ideology, otherwise causes must be peeled back all the way to the first turtle).



This is seriously all a game to them, they do not take their job seriously beyond how it affects them personally, take no responsibility in the influence that was misguidedly handed to them, making off-hands comments recklessly without any regard for real-life impacts. They do this like brains in a jar, solipsists the whole lot of them.

 

[chrisb]

I wondered about that and presumed that Vogt must be suggesting that it was not the exercise which had the effect but the change in attitudes and beliefs which enabled the exercise to be done. All nonsense, of course.

EDIT in response to post #676

 

[Sly Saint]