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

Ah ok - my brains a bit fried now so I’m probably not so good at making sense of things.

 

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?

 

https://twitter.com/user/status/1438050354072068096

 

Typical of the shoddy thinking. He seems to be using two entirely different meanings of "connected" and hoping no-one will notice. Probably not even him.

 

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.

 

We don't know how things would have evolved if no patients talked with him. It might have been worse.

 

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.

 

@Skycloud

I think his behaviour makes it quite clear that he has no interest in engaging with anyone?

 

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.

 

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.

 

Anything's possible but I think it's unlikely that it would be worse.

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.

 

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.

 

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.

 

Thanks Midnattsol, I think I remember that now you mention it.

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.

 

Yes he did. And then he blocked me when I asked why the review he said was "shite" to me privately in July he reported as a good review in the BMJ a few months later...

 

...perhaps he just likes "shite" reviews.