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

Hoopoe said:
I sometimes wonder if the most zealous BPS proponents were at some point in their lives the kind of patient that they see in ME/CFS patients. The one with false perceptions of reality, fear, and so on.

Or maybe the defense mechanism is rewriting a scary past into something that's not threatening. He wasn't close to lifelong disability, he just had a few silly months of unjustified fears and bad behavioural patterns and then pulled himself together.
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Sometime I kind of just realized, that looking at how medicine has been treating this with a "biomarker + tests + effective treatments or bust" mentality, where even with LC going soon on 5 years there has been exactly zero change in attitudes, everything is hanging on a revolutionary breakthrough and until then it's the same old gaslighting, that this is actual textbook all-or-nothing attitude.

Aside from a few hundred individuals and maybe 2-3 small institutions (discounting the NIH because 1) they were mandated by law and 2) they have talked but haven't walked a damn centimeter yet), the health care industry is simply refusing to do anything professional until they get the full solution.

This is in very stark contrast with the narratives about all-or-nothing in psychosomatic models, which don't bother making sense and don't even apply, it's an actual "we refuse to even lift a finger until and unless we have a complete solution to this problem handed to us, because we also refuse to work on until we have a complete solution". This is exactly what they accuse us of.

It's pretty much all projection. All the cheap stereotypes and weird narratives come straight from medical culture and are filtered by their perception. Because those models are not about us, they are strictly all about them.
 
Inconvenient Truths: How Scientists are Being Silenced Around the World, 29th Oct 2024

Join Index on Censorship at Liverpool John Moores University for a discussion on the multiple forces working to silence scientists today. Science at its core is about the pursuit of knowledge concerned with our physical world and its phenomena. Yet, for some rulers and populations, the very notion of it challenges ideological beliefs and political aims.

The silencing of scientists takes on many forms: from China, where obedience to the state trumps scientific development, forcing scientists to live in fear of arrest, to the USA, where scientists face increasing censorship for research concerning climate change and abortion, and India where the current government shows worrying signs of prioritising mythology for science students.

These barriers highlight the increasingly difficult contexts in which scientists are forced to work around the world today.

With speakers Dr Deborah Cohen, Paul Garner MB BS MD, and Dr Hannah Little. Chaired by Sarah Dawood, editor of Index on Censorship.

https://www.indexoncensorship.org/e...ientists-are-being-silenced-around-the-world/
 
He might be attending in his capacity as someone involved in disease and global healthcare.type work (hopefully) rather than a self-diagnosed and self cured ME/CfS/Long Covid/Post Viral Malaise thingy-whatever.

ETA- I think also the location plays a part in who is attending.
 
Andy said:
Inconvenient Truths: How Scientists are Being Silenced Around the World, 29th Oct 2024

Join Index on Censorship at Liverpool John Moores University for a discussion on the multiple forces working to silence scientists today. Science at its core is about the pursuit of knowledge concerned with our physical world and its phenomena. Yet, for some rulers and populations, the very notion of it challenges ideological beliefs and political aims.

The silencing of scientists takes on many forms: from China, where obedience to the state trumps scientific development, forcing scientists to live in fear of arrest, to the USA, where scientists face increasing censorship for research concerning climate change and abortion, and India where the current government shows worrying signs of prioritising mythology for science students.

These barriers highlight the increasingly difficult contexts in which scientists are forced to work around the world today.

With speakers Dr Deborah Cohen, Paul Garner MB BS MD, and Dr Hannah Little. Chaired by Sarah Dawood, editor of Index on Censorship.

https://www.indexoncensorship.org/e...ientists-are-being-silenced-around-the-world/
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It has been said a lot, but I have not seen or read any actual example of them being silenced. I am including the other "I am being silenced!" here. Everything they talk about is a combination of people telling them they are wrong and patients begging them to stop causing us harm, or pointing out that their junk pseudoscience is junk pseudoscience.

Has any of them lost a job? A professorship? A grant? Anything?! They have no problem being platformed hundreds of times, working in very influential positions where everyone agrees with them. Which might actually be why they struggle so hard with any criticism: they never face any in their actual job. They work in complete echo chambers

Here they talk of scientists in China being censored by the state. It's absurd to try to compare this in any way. And climate change scientists aren't being silenced, they're being ignored and outspent by huge industrial interests. Very similar to our situation, actually, just the other way they're misrepresenting here.

The only researchers being silenced and cut off from academic opportunities on ME/CFS are the ones doing real science. This is plain old DARVO and it's excessively absurd that organizations who pretend to dedicate themselves to issues of scientific censorship are basically doing the equivalent of siding with the Chinese governments and fossil fuel interests in this example.
 
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MrMagoo said:
He might be attending in his capacity as someone involved in disease and global healthcare.type work (hopefully) rather than a self-diagnosed and self cured ME/CfS/Long Covid/Post Viral Malaise thingy-whatever.

ETA- I think also the location plays a part in who is attending.
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His description frames him as someone who recovered from Long Covid using neuroplastic methods. Plainly a N=1 anecdotal narrative. What the hell is this Sense about science outfit even doing there? This is beyond ridiculous, they are exposing experts and academics as frauds with this stuff. You can't talk about real science and pseudoscientific mumbojumbo from the same position of authority.

People will just eventually tune them all out. Which is literally the goal of modern propaganda: everyone lies, even experts, they may be right often, but they also blatantly lie about other stuff and you can't know which is which so don't bother listening to them about anything.
 
rvallee said:
His description frames him as someone who recovered from Long Covid using neuroplastic methods. Plainly a N=1 anecdotal narrative. What the hell is this Sense about science outfit even doing there? This is beyond ridiculous, they are exposing experts and academics as frauds with this stuff. You can't talk about real science and pseudoscientific mumbojumbo from the same position of authority.

People will just eventually tune them all out. Which is literally the goal of modern propaganda: everyone lies, even experts, they may be right often, but they also blatantly lie about other stuff and you can't know which is which so don't bother listening to them about anything.
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Ah - he recovered from post-Covid condition. I don’t know anybody who had “post-Covid condition” maybe that’s something you can recover from using neuroplasticity. Completely different from Long Covid or ME/CFS.

I really want to go and ask difficult questions.
 
I’d love to but I literally can’t. Going to the opticians that day, so definitely won’t be able to speak by evening, and sitting up will be beyond my capability, too.

Just release them, it’s not even in a huge room! Don’t let him say he’s being silenced because activists have taken the tickets. He’s not Trump.
 
I see Cohen has been Tweeting about obtaining "security" for this event. I hope it has nothing to do with ME/CFS; it would just be obscene if Garner were given a platform to invert reality & further stigmatise the ME patient community at such an event.

This is really all quite ridiculous. These people variously have academic positions, grants & funding, government & medical-establishment roles, honours, sympathetic and friendly journalists writing uncritical puff-pieces about them, corporate/insurance funding or honoraria, sinecures of all different kinds. We don't have any of that; for some of us, by contrast, being online for an hour or so a day is the most we can manage. One cannot expect very ill patients to confine their personal social media expression to the genteel letter-to-the-editor objection that obtains in academia; for them to adopt a pose of wounded, silenced victimhood on receipt of the mildest social-media pushback is astonishingly mendacious.

These claims have been used to weave a narrative in which we are not only disbelieved, derided, and treated as unreliable witnesses to our own bodies, but regarded as some kind of distant, dangerous "other". Either they are living in such an insulated bubble that they feel they should be permitted to stigmatise us without objection or criticism; or it is a form of what one of their intellectual forebears famously called "projection"; or, alternatively, they are a group of highly privileged individuals acting in bad faith and using such accusations as weapons to silence a group of people who are far less healthy, far more isolated, far less valued by wider society, far more desperate, and far more vulnerable than they will likely ever be.
 
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