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

Esther12 said:
Does anyone think that any good has come from anyone responding to Garner's recovery story? Are there any lessons to be learnt from this for people here on how to be more effective in advocacy efforts?
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Mutual support between those who have been harmed by the sort of advice he is touting around the media.

A warning to others, including with long Covid that quack therapies he espouses like LP are a waste of money and may cause serious harm.
 
Trish said:
Mutual support between those who have been harmed by the sort of advice he is touting around the media.

A warning to others, including with long Covid that quack therapies he espouses like LP are a waste of money and may cause serious harm.
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If supporting people with shared views can play a role in undermining ME advocacy amongst others, particularly powerful people, then it's important to take a cautious approach and I don't think many people responding to Garner did that. Even more reasonable responses to Garner can help encourage unreasonable comments on social media that serve to make things worse for other patients, but I wasn't sure if some people were even considering that.

To me, it seems unlikely that the good will outweigh the harm.

I don't remember Garner mentioning the Lightning Process.
 
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Skycloud said:
Has he actually read any of the literature on ME, CFS or PVFS?
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Mij said:
He's a one man roadshow.
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I was genuinely wondering about it, though the question is perhaps pointless because people here probably don’t know the answer to it. I guess I should have elaborated as to what I was thinking, sorry. I think I remember that Garner has a position as a specialist in reviewing evidence or something and should therefore be able to discuss the literature if he has read any of it. It might be good if patients or others who were knowledgeable were able to engage with him. He may not respond. If he is dealing with the worry of death threats this wouldn’t be a good time for it anyway.

eta - Perhaps it doesn’t really matter anyway, other things are more important than debating with Garner, I think.
 
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Skycloud said:
He does seem to get about a bit doesn’t he. My question was quite genuine, though perhaps pointless because people here probably aren’t going to know the answer to it. I guess I should have elaborated on it, sorry. I think I remember that Garner has a position as a specialist in reviewing evidence or something and should be able to discuss the literature if he has read any of it. It could be good if patients were able to debate that with him. He may not engage, but that may be useful too.
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He has commented on the cochrane review, calling it "shite" to @Caroline Struthers if I remember correctly. But that was before his about face after having recovered.
 
Kalliope said:
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.
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- 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.
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It truly is the last several decades happening at a quickened pace. What a bunch of crap from a person with zero credibility. It truly takes a shameless hack to directly blame millions of people for something they had nothing to do with. I'm almost surprised he's not ranting about "cancel culture".

I see the same slimy tactics played by shady politicians everywhere, always vague threats, always misrepresented, distorted, ignoring their own role in hurting and insulting people.
 
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Esther12 said:
Does anyone think that any good has come from anyone responding to Garner's recovery story? Are there any lessons to be learnt from this for people here on how to be more effective in advocacy efforts?
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Not really. pwME were pouring to help him in the first few months, to which he showed ample public appreciation. The guy is just a giant douche with an agenda, nothing anyone can do about that.

The only thing every pwME and pwLC want is for this jackass to keep quiet about things he knows nothing about, it's completely different to share one's anecdote than using one's statutory authority to present it as a reliable fact. He knows this, it's the only response he ever gets. So of course he must, just must, keep talking about how him being offensive and wrong is, somehow, his god-given right. That's 100% an him problem, nothing anyone can help him with. Not even a course of "high intensity" CBT will fix that.
 
strategist said:
We don't know how things would have evolved if no patients talked with him. It might have been worse.
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Anything's possible but I think it's unlikely that it would be worse.

Trish said:
@Esther12, I'm curious to know how you think people with ME and people with long Covid should respond to Garner's public advocacy for quackery.
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If any response, just point out the relatively high rate of natural recovery from post-viral symptoms of the duration Garner reported and the difficulty of drawing conclusions about what led to recovery from personal experience. Could point out that many people have come to believe that one of many different things led to them recovering? I'm not sure there'd be much value in even that, and I expect that completely ignoring it would be better.

I don't think that critical responses to Garner himself on social media were likely to be anything but unhelpful, though some people are far better at phrasing criticism in a polite and charming manner than I.
 
rvallee said:
Not really. pwME were pouring to help him in the first few months, to which he showed ample public appreciation. The guy is just a giant douche with an agenda, nothing anyone can do about that.

The only thing every pwME and pwLC want is for this jackass to keep quiet about things he knows nothing about. He knows this, it's the only response he ever gets. So of course he must, just must, keep talking about how him being offensive and wrong is, somehow, his god-given right. That's 100% an him problem, nothing anyone can help him with. Not even a course of "high intensity" CBT will fix that.
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Lots of people talk about things they don't know much about. Telling someone to keep quiet is an imposition. When have you thought it was reasonable for someone to tell you to keep quiet about a topic that you want to talk about? Asserting things like "He is fully aware that what he's doing is unethical, which makes it all so much worse" is going beyond the evidence in a way that I think makes things worse.
 
It's also an imposition to influence healthcare for a group of people who clearly do not want this influence. Long covid patients felt that Garner as face of long covid in the media was harmful.

I detest superficial politeness that consider a bruised ego to be a far worse crime than misrepresentation of an illness in the media or promotion of quackery.
 
strategist said:
It's also an imposition to influence healthcare for a group of people who clearly do not want this influence. Long covid patients felt that Garner as face of long covid in the media was harmful.
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But Garner might feel that he's bravely speaking up for those patients that some advocates try to bully into silence? Telling people to keep quiet doesn't do much to challenge that narrative.

At the moment, we don't have a great way of know what percentage of patients want what and that's a real problem. It allows people with opposing views to both imagine that they're speaking for the majority of patients. This is further complicated by the fact that there is such a diversity of views amongst patients.
 
Midnattsol said:
He has commented on the cochrane review, calling it "shite" to @Caroline Struthers if I remember correctly. But that was before his about face after having recovered.
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Thanks Midnattsol, I think I remember that now you mention it.

Mij said:
@Skycloud

I think his behaviour makes it quite clear that he has no interest in engaging with anyone?
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Just as Sharpe isn’t really interested in engaging with anyone either when he posts on Twitter? I think Sharpe’s interested in communicating to the people who matter to him, not engaging with patients or the science. Nevertheless there have been useful and measured responses on the science by people who are knowledgeable about Sharpe’s research which reveal there is more to all this than Sharpe would want people to know or think about. I was thinking of that sort of thing. So not so much about persuading Garner (or Sharpe), but others. I may not be expressing myself the best way, but that’s what I was thinking. Others will be better placed to judge than me.

Edit to add a late addition: On reflection I think I’m giving the impression here that Sharpe and Garner are ‘the same’, with the same message, motivations and intent. I don’t think that way at all. I’m just trying to give an opinion about what might be effective responses and advocacy.
 
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