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I looked at the explanation for what FND is and it's very vague.

 

Oof. Very poor timing. Read the damn room. Or don't, can't imagine a better way to destroy this nonsense than clashing with the need to get Covid under control and finding out that it's definitely not a "small minority" who see through their crap.

In a way, looking forward to what physicians with Long Covid will think about the gaslighting and how they're emoting their illness. It's quite different when you're the one espousing the merits of 5 lights vs. being strapped in and being lied about what your eyes can see.

I guess that explains this...

https://twitter.com/user/status/1319210146380341254

 

This occurs to me regularly. My kids when they wanted to say what it was they knew to be true would say 'there are four lights'. We had a lot of coded language of our own taken from popular fiction.

 

Missing a word? Should be perhaps "there was no heading for CFS or even fatigue"?

 

The only place you ever see such a list of diseases with one cure is on the side of the wagons of snake oil salesmen or the modern day equivalent.

CBT only works for 13% and they are benefitted, not cured. If you are not one of those then, well, that's it, goodbye. How can they acknowledge this and yet be an organisaiton which is " a global network to advocate best practices for ethical patient-centered care for FND."

FND is a dead end diagnosis. If they really cared about the patients rather than having a love affair with their theory they would want to look elsewhere than psychological treatments to help the 87% of people who see no improvement with CBT. We saw in the recent paper that CBT does not reduce the number of seizures people have.

You know that your diagnosis of hypothyroidism is correct when treating someone with thyroid hormone makes them better. If a psychological treatment only benefits 13% it should be a red flag that something is wrong with your theory.

 

Long Covid checks everyone of those, and then some. Not everyone with Long Covid, but most do have at least several of those and many have all of those. Usually temporary. As in it goes away with time, or diminishes, though not always. Mostly with rest, but of course rest is advised against, which only perpetuates them longer. Because reasons.

They keep speaking of functional changes. What do we know causes functional changes in biology and physiology? Why, it's viruses of course, literally the thing they do best, along with hiding and evading. And the immune system, because it has to change how the body functions in order to defend it. All consistent with every single feature of how these things occur. But the dogma is so firm that pathogens can't possibly do chronically what they do acutely, even though many are known to do, but that's unacceptable because of decades of tradition rejecting the very premise, unsurprisingly a tradition which started BEFORE the damn germ theory of disease.

And now the whole field seems to have embraced essentially being pressure marketers, understanding that people don't buy their crap but unable to process why, because they can't imagine their beliefs being wrong. No, it's the patients who are wrong, after all that's the whole ideology, self-reinforcing crap.

 

Anyone notice that there seems to be a small PR blitz under way? Don't know if it's the same thing as this because they don't seem to use the #FNDandUS hashtag. Not big, mostly argumentative with chronically ill people telling them to FO with their gaslighting, which is a big tell as the language is very weird, very "how you do, fellow kids?".

Mostly it comes from MDs or neurologists who work on FND and who seem to be doing public awareness, none of it is aimed at professionals. It mostly says the same things as us: it's real, it's stigmatized. Or it's mostly anonymous accounts promoting FND, along with a few people who may be patients but clearly don't know what FND promoters actually mean.

It's not very good, though. The arguments are very poor and often try to argue that there are positive signs to diagnose, that it's not just a diagnosis of exclusion, pointing at things like fMRI, but always back down immediately saying that those aren't used clinically. It argues about biomarkers and imaging, but only in a vague, general sense, which of course entirely defeats the purpose of the conversion disorder it actually argues about.

It's also sometimes argued that it's not conversion disorder / hysteria, right after having said it.

It's very bizarre. I wonder if it's linked to Fink's thing where he got funding to promote his crap? Or maybe that was only for his country? I don't know. It's just weird.