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

Esther12 said:
I'm definitely not saying that Garner received no sensible comments from patients or that the ME community deserves some sort of collective blame for that appalling e-mail he was sent.
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Thanks for spelling that out.

Esther12 said:
I'm constantly making mistakes in how I present my views and trying to learn from that, but it felt like around some peoples' responses to Garner there wasn't much concern about making things worse. Maybe just encouraging more discussions about this and likely costs/benefits will help encourage a bit more thought and caution?
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Can relate to the part about making mistakes and trying to learn.

Esther12 said:
Maybe just encouraging more discussions about this and likely costs/benefits will help encourage a bit more thought and caution?
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More discussion about this would certainly be good.

Also, I think when pointing out things that we find problematic it's good to refer to an actual post/ argument/ point by linking or citing.

A problem I see is that many forum members are either extremely busy with most urgent / existential advocacy work (including maintaining the forum) or their health has been declining further and it seems often both happens together. So capacities to reflect on how to better communicate seem to be scarce.

Perhaps it would be also helpful to discuss how we can attract more volunteers -- maybe that's a bit related to how we communicate with people both on and outside the forum. I just don't see that people have even the capacities to do that (trying to find volunteers).

I will post some links to related discussions and suggestions later.


[This post has been sleeping in my drafts folder for a while and now mainly posted to appreciate your posts Esther12 and hope I will able to add some links to discussions and further thoughts later.]
 
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Sly Saint said:
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I'm a bit annoyed that the title on the case of the journalist that complains to Dagbladet is not clear it was how they discredited him and his work on ME. He wrote about a patient who had cancer and ME who explained how different the health system treated her when she got the cancer diagnosis even if her ME was the illness that impaired her the most. The journalist/TV2 didn't add he had at one point collected money for research on ME.

Ignoring the case where the psychosocial gang drags someone who tries to help patients through the mud. Again.
 
From the Twitter quote two posts above said:
The activists see things from only one side and thunder away.
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How many sides of the "debate" does PG see?

The general public (with or without ME) is not allowed to reply to his tweets, so he makes sure he only sees the people who agree with him. Ditto with some others on the BPS side e.g. TG.
 
Arnie Pye said:
How many sides of the "debate" does PG see?

The general public (with or without ME) is not allowed to reply to his tweets, so he makes sure he only sees the people who agree with him. Ditto with some others on the BPS side e.g. TG.
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Well, the twitter algorithm pushes down people that are muted and blocked so there's always one thing one can do. Really no point in watching his tweets for me if I can't respond. Reporting his tweets as disinformation or something like that works even better. That will however undoubtedly be followed up by more claims of harassment.
 
Sly Saint said:
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Oh no, they "used formal channels to submit articles to a professional committee and studies to research committees and researchers". The absolute monsters. Lock them all up and throw away the entire prison.

Even worse. They express pessimism. Quickly lock those dangerous people up double time. Can't do a pessimism, that's just a slippery slope to truancy, or something. Certainly not the kind that points out that something that clearly doesn't work doesn't work. I guess Theranos didn't think of that defense: "you pointing out that our machine doesn't work is very pessimistic and, you know, bad for us so you're not allowed to do that".

Then she actually says it doesn't bother her because she's used to it as it's clearly mild and legitimate criticism anyway. And acknowledges that there is a legitimate reason for it, which precisely happens to be the criticism they're hearing but not listening to. A top rule as a journalist is to not make yourself part of the story. Report on it, do not become the story. No serious journalist would make the entire story about themselves. And no serious journalism would write yellow journalist either, but here we are.

This is, somehow, actually weaker than Sharpe's "special report" that featured 4 inoffensive tweets with legitimate or inoffensive criticism that is basically mild compared to what the average woman on the Internet can get, simply for being a woman. Sharpe and Wessely also admitted right after their report that it doesn't bother them, and actually it's all the formal stuff through legitimate channels that is also perfectly legitimate, substantial and accurate.

This is what's known as DARVO: deny the criticism, attack the victims, pretend that you're the real victim, even though it's your actions that are the problem.
 
Sean said:
It is almost parody, isn't it.
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Besides slander, I'm really not sure what reason there is to publish this. It's long past the stage of harassment, with real life consequences for us that go far beyond being upset. There is no journalistic value here, the real story is even being ignored, even as it's given a few words. They're just saying we shouldn't speak, have no right to complain about mistreatment and harmful discrimination. Even as that discrimination and its consequences are documented.

Really that's all this is. Like the Reuters hit piece. It's just slander. Kicking disabled people to keep us down, while claiming to be helping.
 
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Sly Saint said:
eta paper in tweet discussed here
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I think the paper discussed is actually this one:
A safe and effective micro‑choice based rehabilitation for patients with long COVID: results from a quasi‑experimental study 2023, Frisk et al
(both papers seem to be part of a campaign to promote the Lightning Process, without mentioning it by name.)

This tweeting actually made me decide to sign up to twitter, to respond. But I see that Paul Garner has blocked replies - only people he follows or mentions can reply.
 
The entire basis for the controversy over recoveries is entirely the creation of medicine, having refused to properly count. If we had properly counted, there wouldn't have been that much confusion. If there had been proper health care following people over time, there would have been none of that nonsense. If it hadn't been for decades insisting that magical thinking is a complete cure, there wouldn't have been any of this nonsense. This is asinine.

Oddly enough this is still a common meme in Long Covid, although less common in the last year. People posting that "recovery is possible", even though all the data showed that it was actually the norm. Even though posts on the theme of "I recovered, I'm leaving this community" were very common for a while on the LC subreddit, though less now. Because remissions and recoveries are natural, barely anyone speaks of health care being a relevant factor, it's all time, while people suffer needlessly.

Had people just told the truth, observed, followed the evidence and avoided making stuff up, everything would have worked out fine. But it had to be turned into some stupid woo about magical mind powers.
 
Hutan said:
This tweeting actually made me decide to sign up to twitter, to respond. But I see that Paul Garner has blocked replies - only people he follows or mentions can reply.
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He's been like that for... well, my recollection of time is very poor, but at least 1 year, probably 2. About as soon as he switched his messaging.

The parallels between the antivaccine/conspiracy "debate me, coward" crowds but they never want an actual debate is a perfect circle. It's the "woke" nonsense in all but name, every bit as silly and pointless.
 
Yes, the tweeting really does underline the problem with ME/CFS materials that say 'recovery is rare'; 'only 5% of people recover'. We have to stop doing that; it makes it too easy for BPS proponents to attack us as being pessimistic and for them to suggest that their interventions have been curative.

Even at the 6 month mark, recovery from post-infection fatigue syndromes is quite normal, without any particular intervention or application of willpower. The BPS proponents have their own Dubbo study showing that. But, after two or three years, rates of recovery seem to be very low.

Regarding the NICE guideline, which Garner says is inaccurate about recovery in ME/CFS, 1.6.4 'Information about ME/CFS' says this:
  • varies in long-term outlook from person to person – although a proportion of people recover or have a long period of remission, many will need to adapt to living with ME/CFS
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For sure, the guideline is pretty vague. It would have been better if it had explained about the front-ending of most of recovery, that recovery is common initially. Probably that's partly a result of the lack of good quality epidemiological evidence. But, the statement is certainly not inaccurate.
 
Hutan said:
This tweeting actually made me decide to sign up to twitter, to respond. But I see that Paul Garner has blocked replies - only people he follows or mentions can reply.
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You can 'Quote Tweet' such people's tweets, in which you state your views on the person's tweet. Then it's at least a sort of reply even though you can't reply directly.
 
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