CFS recovery success stories on YouTube

[RupertBear]

Have this reference to the concept of 'brain training' in the realm of we who are neurodivergent,

December 20, 2019
SPECIAL REPORT
Education
Parents pay thousands for 'brain training' to help kids with ADHD and autism. But does it work?
Some families say they’ve seen transformative benefits from programs that claim to rewire the brain. But many researchers say the evidence is thin.

https://www.nbcnews.com/news/educat...-training-help-kids-adhd-autism-does-n1100681

Thanks. I understand the mind/body connection in all conditions but I dont see how changing your mind can cure a physical illness where something is not working in the body. Otherwise theyd be offerung 'brain training for diabetes etc.

 

[Artemisia]

Are these 'brain training' therapies offered for any other conditions? I cannot understand why we need 'brain training' while people with other neurological conditions dont. Just wondering.

I've tried asking that of the brain retraining proponents. Why not market their programs to people suffering any disease inc cancer? What is it about mystery illnesses like ME that would respond to Gupta but not cancer?
I never get an answer from them.

 

[southwestforests]

Otherwise theyd be offerung 'brain training for diabetes etc.

Personally, I want to see their "Brain training for when you are choking from an obstructed airway" classes.

 

[hapl808]

Personally, I want to see their "Brain training for when you are choking from an obstructed airway" classes.

I'm in.

"If a piece of food becomes lodged in your airway, sit up straight and think to yourself, "STOP. STOP. STOP." Now tap on your palm three times and swivel in your chair. Congratulations, you have now lost consciousness from lack of oxygen."

 

[wabi-sabi]

MCAS people get these things too.

 

[Johnmac]

I have noticed there are plenty of success stories out there. Has anyone tried to summarize the outcomes? If not, I will try to get some info out of those.
I know there may be piles if bullshit or promoting things like ANS rewire etc. But also there may be something useful (I am not sure though).
Before any comments, I know few of those sufferers, if any, were diagnosed with CFS. I was not diagnosed either, I just have CFS-like symptoms.

Raelen Agle, who interviewed 100 makers of such videos, wrote that putting the nervous system front & centre helped more than anything—she did not think diet was crucial, & was a vegan when she recovered.

Hosing down fight or flight seemed to be what she meant (I think).

After interviewing 100 recoverers, she says that supplements played no role. The game-changer that has arisen in the last decade is brain training.

(That's the end of the notes I made while watching her vid.)

 

[ChrisD]

Raelen Agle, who interviewed 100 makers of such videos, wrote that putting the nervous system front & centre helped more than anything—she did not think diet was crucial, & was a vegan when she recovered.

Hosing down fight or flight seemed to be what she meant (I think).

After interviewing 100 recoverers, she says that supplements played no role. The game-changer that has arisen in the last decade is brain training.

(That's the end of the notes I made while watching her vid.)

She is nice and a great presenter/interviewer, but there is definitely a lot of confirmation bias in her conclusions. Which is a bit concerning as Goldsmiths university are running a study on recovery themes in her videos but maybe they will be more analytical (doubt it). I've noticed that interviewees will often clarify biological, physiological treatments that impacted them positively/set them on their way with brain retraining is the final piece and yet all the focus goes on the trendy mind body work. Also Conflict of interest that she has a mind-body programme.

This seems to be a common phenomena that people will get medical treatments like stem cells, apheresis, or certain drugs which clearly move them along but they attribute their recovery to the mind body training at the end.

 

[RupertBear]

This is a really interesting thread. Thanks to all of you. I am open to trying anything but what I object to is someone making money out of a therapy which might work for some but has been discounted by all the ME/CFS charities. ME/CFS is so complex that it would be surprising if one size fitted all anyway. There are a lot of desperate people I'm our community so they are vulnerable to anyone touting any therapy. Great discussion.

 

[RupertBear]

Agree with positive thinking when cynical or miserable. But positive thinking does not work so good with migraines or back pain afaik. There must be something else. I wonder what.
Is there a chance the guy's nervous system stuck in the fight-or-flee mode causing anxiety translated by his brain into pain&fatigue and later he was able to return to the rest-and-digest mode? I know too little.

I don't know of any other chronic condition where 'positive thinking' is recommended as a cure.

 

[RupertBear]

Just becasue we have no biomarker does not mean CFS doesn't exist.
Science has not disproven the existence of CFS, it simply has not elucidated the mechanism.
Parkinsons disease has no biomarker and often cannot be proven except post mortem. Yet it has a solid diagnostic package that has been built over decades of work by many people and drugs have been found for it. The process of finding those drugs zigzagged, even the simple gold standard drug Levodopa was not easy to discover despite it being the basic standard of care today.
Yet no biomarker or test is available.

Hell Narcolepsy has no biomarker and until the discovery of a new neurochemical in 1998 there was no theories on it either. It also has drug treatments despite no objective test.

Even Alzheimers disease can often only be confirmed with an autopsy.

Thus this is about societal understanding. MS was considered psychosomatic, we know better now becasue a diagnostic test was developed. Parkinsons was also eventually proven to be physical as was Narcolepsy.



The placebo effect is a subject in itself. Hell its been getting stronger in recent decades (for unknown reasons) and often invalidates tests of antidepressants.
And lets not forget denial, the entire CBT/GET "treatment" is designed to use denial to make ME/CFS go away. For psychological conditions it can actually have some tangible effect. Even in physical conditions you can deny things away, even cancer until you die from it. But it never treated the problem.

Finally those who are depressed are often misdiagnosed with ME/CFS. Exercise works for depressed patients. And random pains are also commonplace in depression.

I get that we want to believe in simple cures for our problems but we are doing ourselves a disservice if we fall for them.

Couldn't agree more.

 

[Johnmac]

She is nice and a great presenter/interviewer, but there is definitely a lot of confirmation bias in her conclusions. Which is a bit concerning as Goldsmiths university are running a study on recovery themes in her videos but maybe they will be more analytical (doubt it). I've noticed that interviewees will often clarify biological, physiological treatments that impacted them positively/set them on their way with brain retraining is the final piece and yet all the focus goes on the trendy mind body work. Also Conflict of interest that she has a mind-body programme.

This seems to be a common phenomena that people will get medical treatments like stem cells, apheresis, or certain drugs which clearly move them along but they attribute their recovery to the mind body training at the end.

I don't know enough to draw conclusions.

We really need some decent studies comparing the two broad approaches.

 

[wabi-sabi]

I'm reading an interesting book called The Cure Within: A History of Mind Body Medicine. It's really illuminating to see where these ideas come from and how they get recycled over and over into new scams. Some of the themes are: the power of suggestion, the body that speaks, and the power of positive thinking. Once you've identified the themes (and the author is really good at picking out these threads and how they go together) you can identify the scams much better.

So very, very much of it is based in misogyny and the basic irrationality and suggestibility of women.