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

Peter Trewhitt said:
For me a big problem of the GET/CBT research is that it has never seriously attempted to look at other sources of evidence other than their one preferred experimental design. To propose a treatment for deconditioning and false cognition without ever looking at whether deconditioning and false cognitions are actually present, without asking is there evidence that this is not a distinct biological condition but just part of the normal continuum, is in itself problematic especially when you choose an experimental design that maximises your uncertainty.
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Yes, they they seem to do the opposite. Examine trials all seeking to validate the same flawed hypothesis, and then set them up as being independent verifications of each other. I don't think they even perceive the need for anything else, because this approach of theirs convinces them there is no need.
 
Barry said:
Yes, they they seem to do the opposite. Examine trials all seeking to validate the same flawed hypothesis, and then set them up as being independent verifications of each other. I don't think they even perceive the need for anything else, because this approach of theirs convinces them there is no need.
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Hey, I'll have you know that every single one of my dowsing rods agrees with every other one of my dowsing rods and that obviously means that they are all well-calibrated. S C I E N C E.
 
"Official" alternative medicine sounds just as dumb and quack as most alternative medicine claims. Zero difference between this and healing vibrational energy or quantum cognition or whatever.

It's shocking seeing just how horny people in medicine are over this stuff, straight up talking like lunatics or a broken Deepak Chopra generator and literally no one in health care objects to that, you could make a major conference over this stuff and get thousands of GPs eating it all up. What the hell happened to medicine? This is madness.

 
The Norwegian newspaper that wrote about the ME WAR last summer, has a giant headline about Garner receiving death threats because he has recovered from long covid. I don't want to give them any clicks, but the person who made me aware of the fact said the death threats are related to him harming pwME with his claims.
 
I saw on the media somewhere that a female tennis player said she expected to get multiple death threats following her losing a match. It is routine now for their support teams to need to filter what the player sees, and they often don't follow any social media during a tournament to protect themselves from seeing this stuff while focusing on their matches.

The world of unmoderated social media seems to be awash with death threats to anyone who gets any media attention for anything. The sources of the threats are always anonymous, and often claim to be representing some particular group, without any evidence that this is true.

I think organisations like Twitter need to be radically changed to enable removal of any such threats immediately and banning of the perpetrators. No one should be subjected to such threats.

But I also think, given that environment, it is irresponsible of a doctor to make public accusations against a patient community for something that very likely did not come from people in that community, but from people with other agendas. Even if the individuals concerned do have ME/CFS a responsible doctor would see it for what it is and not make sweeping generalisations that blame blameless sick people for the actions of unknown individuals.
 
Naturally, I don't condone death threats threats of violence or attempts to intimidate in any way.

However, Garner's reaction to his illness seemed a bit hysterical to me. Quite unlike how many of us reacted when we first got sick - we had faith the medical profession would help and support us and we tried to soldier on.

Garner panicked at being so terribly sick and went off somewhere lovely to scuba dive.

I am afraid I do not find Paul Garner a credible witness.
 
If it is true that Garner received death threats, or something that he has in sincerity construed as a death threat, then that must be horrible for him and the best thing to do is go to the police. I don’t think it matters whether the person is a pwme or not. The ME patient group as a whole isn’t responsible. I agree with much of @Trish’s comments about Twitter.

Garner has rights of free speech as we all do, but he repeatedly makes pronouncements that a person in his position, claiming his expertise, shouldn’t be making. He should also know from his own short time of being unwell how impactful such comments can be.

Edit - removed last sentence on reflection it’s not what I want to say.
 
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Awful to see another smear-article in this newspaper.
He says this is the first time he shares his story with the press :confused:

Here are some google translated quotes:

- All I tried to do was tell a story that it is possible to get well. The ME activists came after me, and in addition some of them with "long covid".
...

Garner even got long-covid. But he recovered. This created a great deal of debate in the CFS / ME community.

This is the first time Paul Garner shares the story of how he recovered to the press.

- Some seem rational on the outside, but then they attack by saying they think you have never been ill, trying to discredit me personally, blackmail me as a doctor, as a person, as a researcher, says Paul Garner to Dagbladet.
...

- Dagbladet is aware that you have also received death threats, can you confirm this?

- There have been many threats that now I have to shut up and stop talking about CFS / ME, but there have also been death threats.

Death threats
Dagbladet has seen such a threat. These are serious death threats that someone is ready to have him removed for good, if he does not stop "harming ME patients" by talking about CFS / ME. Fortunately, the police in England take the threats seriously.
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- The image that is conveyed about this disease is that you should not exercise, you should rest. If you do too much, it will hurt you for the rest of your life, says Garner.

From leading figures in patient associations was the message: some of you will be sick for the rest of your life. You're going to lose your job, lose your friends.

- I experienced a fear that locked me inside. It's very lonely for people, I think. The expectation that I would not get better was frightening.

...
He received a tip from a doctor-colleague that he should talk to a Norwegian doctoral student in psychology who had previously had ME. And get well.

Garner called the Norwegian research fellow.

- After 48 hours, my expectations were completely turned upside down. I have been working with research-based medicine for years, but it is quite extreme how unconscious expectations control what happens to you.
 
Kalliope said:
The image that is conveyed about this disease is that you should not exercise, you should rest. If you do too much, it will hurt you for the rest of your life, says Garner.
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This is a twisting of the idea of pacing.


Kalliope said:
From leading figures in patient associations was the message: some of you will be sick for the rest of your life. You're going to lose your job, lose your friends.
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I don’t know if that’s the message any ‘leading figures’ gave or not, but these things are the verifiable lived experience of some patients with ME. He is denying the experience of people who have suffered and are still suffering a great deal.

Has he actually read any of the literature on ME, CFS or PVFS?
 
Kalliope said:
This is the first time Paul Garner shares the story of how he recovered to the press.
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Fascinating that Paul Garner has conducted his health issues in the full glare of social media and the press, but now claims this is the first time he shares his story with the press.

I am not condoning any death threats, which should be addressed with the police and then as appropriate in a court of law, but one of the first things Paul Garner did was publicly request advice and input from people with ME early on in the course of his Long Covid. He can hardly complain when people continue to respond publicly to his highly publicised story and debate.

He is the one that is arguing in the press and in medical journals that his personal experience should be used to inform how people with Long Covid are treated, so he can hardly complain about any comments with in the law that others then choose to make.
 
Skycloud said:
Garner has rights of free speech as we all do, but he repeatedly makes pronouncements that a person in his position, claiming his expertise, shouldn’t be making. He should also know from his own short time of being unwell how impactful such comments can be.
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He does have freedom of speech, of course.

He also abuses it.

He uses his position as an emminent professor to get himself attention from the media so he can get away with talking utter tripe because it's from his perspective as a patient. Enabled by certain news and media outlets.

Anyone who sticks their head above the parapet on social media gets a trolling. It's not right but it happens to everyone. Should Garner be treated differently to any other social media user? I don't think so.

I might have a modicum if sympathy if he were to start or back a campaign for better moderation or protection for everyone on social media platforms but he doesn't. He uses it to further his own ends.

I don't doubt he got abuse or even threats but until proven to be from a pwME they are simply purporting to be a pwME. For all we know the could be from anyone from a pwME to a disgruntled colleague or someone he's had a parking row with.

Edit -spelling
 
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@Invisible Woman I don’t think anything I’ve said in my two posts is a contradiction of what you have posted seemingly in reply to me - unless I’m misinterpreting your post?

(eta - expressing myself badly - not contradiction, just whether it was a response aimed at me. )
 
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I think parts of this story - shock, horror, death threats - is losing a bit of public sympathy and outrage as more and more people complain of it.

Doesn't make it any less distressing or less worthy of police action but it is so frequently reported now in all sorts of situations. i think people in general know that it is happening but at the same time can see it's normally the work of trolls or individuals.
 
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