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'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington
MrMagoo
Senior Member (Voting Rights)
Apparently it’s “made very clear” that this isn’t suitable for physical injuries (I read the Reddit) but also it seems that physical injury doesn’t matter because scans show lots of things, many of which don’t hurt.
There was talk of a Facebook group which sounds like the Wild West, where MRI is a dirty word/acronym, and the cured rise up from their wheelchairs like disciples of TB Joshua at a Synagogue Church Of All Nations mass
There was talk of a Facebook group which sounds like the Wild West, where MRI is a dirty word/acronym, and the cured rise up from their wheelchairs like disciples of TB Joshua at a Synagogue Church Of All Nations mass
Jonathan Edwards
Senior Member (Voting Rights)
Not so much problematic as barn door nonsense.
Most walls have some cracked bricks. That doesn't mean that cracked bricks do not cause walls to collapse.
Research that starts out with this level of stupidity might as well go in the bin from the outset.
rvallee
Senior Member (Voting Rights)
Bit odd that she dismisses the "illness beliefs" as nonsense and says that neither CBT nor GET work, but finishes by blaming the ME community for misleading her. Never blames MDs for pushing the thing she says is nonsense. Garner is definitely pushing the CBT/GET stuff, and the pain reprocessing is the same overall packaging, whatever the curable folks might say about it. It's certainly very similar to LP.
I don't know what's her story. It's probably real to her. I do remember seeing some odd stuff from Garner that doesn't add up either, odd stuff in general about his ways of framing things. I recently noticed one comment he made from back then when he was "against" GET mentioning that he noticed problems when exercising when his HR was >110, which is almost cute. I easily hit 130 from simply washing dishes sitting on a stool. People with POTS report 160+ from simply sitting up and can last for hours. I guess he was just following a script all along. I don't know about Fiona, but things don't add up there either. I don't think the details matter much either.
What's funny is how it's common for MDs to argue that as far as they know, and I do believe that they know that little, pain is not a feature of ME. Not a feature of a disease where half the name is "achy muscles". But here she is pushing for some pain pseudoscience for ME, which it seems some MDs are very enthusiast about pushing her story too, alongside CBT and GET and its "illness beliefs" stuff, which she thinks is nonsense.
Anyway I guess it just holds the general principle that people are weird, just freaking weird.
The preceding posts have been moved or copied from the Paul Garner thread
Sid
Senior Member (Voting Rights)
I think under this operant conditioning paradigm, they would regard PEM as an extinction burst, a temporary increase in conditioned response when you remove reinforcement. It's the same with classic CBT/GET approach. Nothing is wrong, all symptoms are just conditioned responses due to fear of movement. You can just push through any "setbacks" since exercise can't harm you. Except all those who ended up on the feeding tube of course.
Sid
Senior Member (Voting Rights)
https://twitter.com/user/status/1769421643833614535
Tweet reads:
"I'm not, no. I don't think it's the answer. However, going through Curable has helped me understand why the LP works for some (and we all know stories of people it does work for). I'd still love my £600 back that I paid of the LP, it was a waste in my case"
This is all too common among recovered patients. They did X and then they recovered. Therefore, they feel X must be a cure. Then they fall victims to confirmation bias and proceed to become a disciple. It would serve them well to keep the possibility in mind that 1) their recovery may have happened regardless of X and 2) there are likely thousands who tried X before and did not recover.
That said, my attitude always has been: why not try X if it is cheap and is safe enough? Cheap meaning a few bucks for a box of Sudafed, for instance, or safe like a diet change. The pay-off is great in an off chance that it works. Who knows, you could have one of the rare subtypes with a cause that can be cured by X. I remember seeing an interview of a woman who claimed to have recovered after a diet change. She wasn't proselytizing and she seemed to be unaffected. Which made me to think, maybe, just maybe, gut biome problem could cause ME/CFS-like symptoms in some people.
That said, my attitude always has been: why not try X if it is cheap and is safe enough? Cheap meaning a few bucks for a box of Sudafed, for instance, or safe like a diet change. The pay-off is great in an off chance that it works. Who knows, you could have one of the rare subtypes with a cause that can be cured by X. I remember seeing an interview of a woman who claimed to have recovered after a diet change. She wasn't proselytizing and she seemed to be unaffected. Which made me to think, maybe, just maybe, gut biome problem could cause ME/CFS-like symptoms in some people.
MrMagoo
Senior Member (Voting Rights)
It’s the proselytising that’s the weird part. And the very black and white thinking that x is right, y is wrong in all cases. Also this idea that ME charities or communities are “keeping people sick” or somehow preventing recovery. It’s all very cult/conspiracy/evangelical type of thinking, no nuance or shades of overlap.
Nor want to.
Part of it is human nature, I think. Not defending Ms. Fiona, but I once read about a baseball manager who won the championship by applying pure statistics, not gut feelings. He said something like: even if you intellectually understand statistics and random chances, it sure feels you have control when you live through it. Or the great debate about momentum when there is no such a thing. (George Kittle Emphatically Touts 49ers’ Epic Momentum Shift in NFC Title Win vs. Lions - Sports Illustrated).
Jonathan Edwards
Senior Member (Voting Rights)
And of course Paul Garner is supposed to be an international expert on why one should behave differently, but he doesn't.
cfsandmore
Senior Member (Voting Rights)
Is Curable an interoceptive therapy?
Yep sophists start with ‘what they want’ which eventually ends with self-kidding and not being able to see it. but it begins with seeking, then seeing, what they want and is based on being the type who just ‘wants to win an argument by saying lots of words that back up what they’ve decided they are arguing for as an outcome’
vs being of the type who sees such things/‘arguments/debates’ as means to truth or understanding or getting somewhere - like literal laypersons ‘what I want’ arguments being confused with ‘intelligent discussion of’
it is highly relevant in this context actually because I believe the term ‘rigorous debate’ and ‘forming argument’ in the context of the academic literature using /seeing these as reasons/ways /modes for the truth and facts to ‘be gotten to the bottom of’ due to the back and forth has inplicit within this a different and more specific meaning of argument I suspect
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