Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

[Sparkly Unicorn]

There's a other Brain retraining book about to be published next year - as part of a recovery narrative. Unfortunately it's under a big 5 publisher Penguin Random House. Emma Zimmerman Body Songs.

The inbuilt ableism of publishing and the lure of the recovery story means that brain retraining is perfect territory.

The author apparently recovered within a year of COVID.

Body Songs by Emma Zimmerman: 9780593994276 | PenguinRandomHouse.com: Books

A luminous, searching memoir of illness, uncertainty, and the strange, intimate work of healing In 2022, Emma Zimmerman contracted COVID-19. What she expected to be a mild illness instead unraveled into...

www.penguinrandomhouse.com

 

[MrMagoo]

As I understand it, randomised controlled trials were introduced because relying on expert clinical opinion proved to be a disaster way too many times.

And it still is.

It's brazen corruption of science.


And is it, or the pattern of it, unique to ME/CFS, et al? Or are they just arbitrarily pathologising normal physiological responses to suit their prejudices?

Also a good question.

I just think if they are moaning that science cant measure things properly in relation to brain training, well it can measure that so they should run a trial.

 

[MrMagoo]

There's a other Brain retraining book about to be published next year - as part of a recovery narrative. Unfortunately it's under a big 5 publisher Penguin Random House. Emma Zimmerman Body Songs.

The inbuilt ableism of publishing and the lure of the recovery story means that brain retraining is perfect territory.

The author apparently recovered within a year of COVID.

Body Songs by Emma Zimmerman: 9780593994276 | PenguinRandomHouse.com: Books

A luminous, searching memoir of illness, uncertainty, and the strange, intimate work of healing In 2022, Emma Zimmerman contracted COVID-19. What she expected to be a mild illness instead unraveled into...

www.penguinrandomhouse.com

This is exactly how The Salt Path happened. Who was the disabled writer who did a brilliant blog post about how publishing kept telling her they basically want a recovery arc?

 

[dave30th]

Well, yes the article is very much without sources.
I’m not sure it’s anything Andy needs to look for, I was just asking generally

there was a study from NYU that showed anticipatory tachycardia and patients with POTS who were told they were going to have a tilt table test. they interpreted that as suggesting that the tachycardia itself was psychogenic. It must have been 3-4 years ago.

 

[dave30th]

there was a study from NYU that showed anticipatory tachycardia and patients with POTS who were told they were going to have a tilt table test. they interpreted that as suggesting that the tachycardia itself was psychogenic. It must have been 3-4 years ago.

Fear conditioning as a pathogenic mechanism in the postural tachycardia syndrome - PMC

Despite its increasing recognition and extensive research, there is no unifying hypothesis on the pathophysiology of the postural tachycardia syndrome. In this cross-sectional study, we examined the role of fear conditioning and its association with ...

pmc.ncbi.nlm.nih.gov

 

[MrMagoo]

Well this seems like something the brain trainers could test scientifically. Y’know, it’s stats and data not qualitative interviews.
Also something that could be tested in a control (non ME/CFS non LC) at the same time.

 

[Turtle]

Fear conditioning as a pathogenic mechanism in the postural tachycardia syndrome - PMC

Despite its increasing recognition and extensive research, there is no unifying hypothesis on the pathophysiology of the postural tachycardia syndrome. In this cross-sectional study, we examined the role of fear conditioning and its association with ...

pmc.ncbi.nlm.nih.gov

I had a very bad experience with tilt table testing. 1 month of PEM, my brain all over the place.
I would fight anyone trying to put me on it again, my heart rate would go up big time.
Bad experience and prevention or anticipation?

 

[dave30th]

Bad experience and prevention or anticipation?

their argument was that the fact that people with POTS and tilt-table experience had anticipatatory tachycardia, while the comparison group didn't, indicated that the tachycardia itself might be psychogenic rather than that those with experience were having understandable anxiety upon knowing they would have a tilt-table test.

 

[Jonathan Edwards]

Tachycardia through anticipation is highly plausible, which maybe suggests that the tilt table test does not actually tell us anything useful about people with orthostatic intolerance. I don't think we have any evidence that it reflects important pathophysiology. It just seemed a neat idea to some physicians that it did.