I'm aware this might be another thread, but for the context of this: who is this woman? and why is she so ardent about the topic area - rather than just defending her husband's whatever (I don't know what that 'reason for being is' and why is he ardent?). I'm not on Twitter so intrigued - are there lots like this, and are they linked to the area or involved because of their passion for something else?
I'm often confused by how some who have no direct experience of the condition or linked to it via job or something become so fixated and sure, so end up assuming it is just the style of 'winning arguments' to pick an angle and go for it, but don't know if some have some history behind it etc.
Is this instance just another argument area where it attracts 'debates' with certain sides due to the cliche of truth being nuanced and fact requiring more words vs when you can create to wordcount and emphasis because you are just saying rhetoric to lobby for a certain ideology - and underneath it all this really isn't about FND or ME/CFS at all, but they just get used as vehicles/easy targets where there is some other 'thing' that they are really arguing for? Or are they really bothered about FND?
Are they just people who have got sucked into this because they are contrarians and found this topic (and will fight to the last once you've put your argument over to win it so to speak) or are there roots and connections and 'offline' works that these people are involved in? is she connected to any of the people like Sharpe she is using the words of?
Best as I can tell this is all about her politics. I became aware of Gaffney when he promoted & defended the Jeremy DeVine op-ed in the Wall St. Journal, joined, to a lesser extent, by her. She'd already been on about Havana Syndrome at that point, I believe. In that WSJ piece, 'ME/CFS' when first mentioned was in blue text, and presumably anyone clicking on that, which would to reason would mean they were interested in further explanation, and it was a direct link to PACE. When Gaffney weighs in on LC she occasionally comments herself, or at least retweets. Usually ME/CFS & PACE are part of the discussion. When called on it he's had to back off just a bit, or pivot by minimizing it as just one study; I've never seen her address it. Of course, it's a crucial element that has to be valid, or their argument is significantly weakened.
To my knowledge, The New Republic has traditionally been a left-leaning publication, but not extreme in its politics, not considered all that far left of center. I suppose that may have changed; she also writes for Jacobin, which is considered very left of center. She's weighed in quite a bit on political matters relating to a branch of the left-wing Democratic Party that identifies as "Democratic Socialists." Key people in this group are Bernie Sanders, Alexandra Ocasio-Cortes, etc. This ties in with Gaffney's reputation for being a strong proponent of "Medicare-For-All." And Shure has written quite a bit about healthcare policy, naturally from a left-wing stance generally considered 'further' left than most 'mainstream' Democratic party politicians (i.e. Hillary Clinton).
Some of the positions that some in this sphere seem to hold tend to hold similarities to those expressed by people who are proponents of the BPS approach towards ME/CFS. I can't remember if Wessely or his colleagues have spoken directly on this, but I've seen it in writings sympathetic to him & their dealings with us. That is, that as a patient group we tend to consume valuable resources, such as the precious time allotted to doctor's appointments, while we never seem to get better. That we're resistant to 'validated' treatment options (CBT/GET, obviously), and have poor attitudes towards the medical profession, and, of course, that we're downright hostile, anti-science, anti-social, anti-psychiatry, and even threatening.
Therefore, we're a big problem for systems like the NHS, which are seen as benevolent and doing a thankless job in the face of such ingrates and malcontents. If we're right that this is a physical illness, we are likely going to be a very expensive group to deal with, from research to treatments. We could actually even threaten the viability of healthcare systems. Since everybody knows Wessely et al solved this all years ago, why are we still such an angry group anyway? If only we'd accept CBT & GET we'd get better & it'd be one less major problem that affects everyone, not just entitled Westerners who don't want to own up to the actual problem, which is almost certainly depression or another psychiatric disorder. Add to all the rest of it is the casting of us as mind/body dualists & perpetuators of the stigma against mental illness.
There was always an element of this on the political left, not that it was a common discussion. It was mentioned on occasion early in the Obama presidency when the debates took place around the Affordable Care Act. It was a very minor part of the debate, as we always are, but there were voices in ME/CFS advocacy quite concerned that the ACA pointed towards CBT/GET and antidepressants becoming mandated. Fortunately, that didn't happen, not that too many people's minds have been changed. And of course it goes without saying that the comparatively right-wing view that we need to suck it up, get a job, go exercise, whatever, this is only seen in Western society, blah, blah, blah, has always been more prominent, more vocal, more insulting.
But I guess that as a neoliberal talking point, it never really went away. Natalie Shure might be right about Havana Syndrome, who knows. But the way she has always spoken of it has been rather insulting, yet couched in verbiage that leads to accusations that those who take issue with her analysis are actually the ones talking sh*t about mental illness. To top it off, she comes off as unbelievably arrogant--the sort of person who can't understand why anyone else has the right to an opinion different from hers.
In short, it's...identity politics. And in this case I think a little worse than Jeff Wise, author of the New York article from a few weeks ago. She got likes, retweets, and praise, from a whole bunch of 'blue checks,' none of whom seemed to know the first thing about most of what she talked about, let alone ME/CFS or PACE. One called for a Pulitzer; others, from publications like CNN, Politico, Vox, Harper's, the Nation, Vice, Slate, Bloomberg, the Guardian, NY Times, NBC, etc, etc., all with thousands of followers, going on about how great this article is, how necessary, outstanding journalism, compassionate, informative...and that's something you don't see as much of when someone on the opposite side of the political aisle puts out a hit piece on ME/CFS. Generally speaking.
This shouldn't be about politics, of course, though I suppose everything is to an extent. Interestingly I saw that someone on Mastodon posted about it on there...right below a re-post of something from...Omar Wasow. But then there's the role of editorial, and I've been wondering about how the Jeff Wise article wasn't vetted. Now this. Someone responded to a blue check's uncritical lauding of this, which prompted a response that they trusted The New Republic to get it right & not publish something that's actually at odds with the science. In spite of how she uses her platform, I don't care about Natalie Shure's politics, even though in my view it underpins & directly influences her views on all of this. I do care that whatever she says about the science is so incredibly wrong, and wrong-headed, and laid out in a fundamentally misleading & dishonest fashion, and because of what she believes, that's good enough for so many other people with influence.
