CFS recovery success stories on YouTube

[Viala]

The question is not hypothetical. I've heard that from: lyme physicians, ME/CFS practitioners, naturopaths, Gupta, Medical Medium, physical therapists, psychiatrists, chiropractors, TCM practitioners, a few people on this forum. All have been convinced that they could help me if I listened.

And the answer is not hypothetical: I tried many of those things with an open mind. As I've said, I tried Gupta and followed all the directions. I did the same with Medical Medium. And TCM, chiropractors, physical therapists, ME/CFS doctors, etc.

If something seems easy to do (I borrowed Gupta, not sure I would've paid for it), then I'm perfectly happy to try it. If it doesn't work, then on to the next one. Quite simple, although sometimes the risk/reward analysis is more complex.

There is still no information here about why this method wouldn't work and why we shouldn't try it. Useful information in this thread is: there are people who say it helped them, and that this method may help because it helps to go out of fight or flight mode. Then there is a lot of scepticism and fear mongering.

Well... I have begun to regret I started this thread.
CFS/ME has no biomarkers (double blind placebo controlled testing). Supplements do not work mostly. Theories come and go. All we have in these videos is snake oil. Buckets of it. I am not sure if I need to review any more. The one we had was a good one. A lot of bad ones are to come.

So the criticism and ridiculing worked, there is regret about even mentioning these techniques. And all of it happened without even talking about what this method is. That's how manipulation works.

 

[hapl808]

There is still no information here about why this method wouldn't work and why we shouldn't try it.

I said I did try it with an open mind and it didn't work for me. I tried it because of all the reports of people who say it helped them. That's it. I'm not sure what you're asking about 'why this method wouldn't work'? I have no idea, and I'm not really interested in why something didn't work as it's all just theory anyways.

I research and then try stuff. Forums are good for anecdotal reports. That's one of my anecdotes. That's all. If Gupta or DNRS or whatever version is helpful for others, then that's great for them.

Not sure what in my answer was fear mongering or skepticism.

 

[Viala]

I said I did try it with an open mind and it didn't work for me. I tried it because of all the reports of people who say it helped them. That's it. I'm not sure what you're asking about 'why this method wouldn't work'? I have no idea, and I'm not really interested in why something didn't work as it's all just theory anyways.

I research and then try stuff. Forums are good for anecdotal reports. That's one of my anecdotes. That's all. If Gupta or DNRS or whatever version is helpful for others, then that's great for them.

Can you tell about what this method is? How it looks like? How long they say it should be used to start working? Any positive outcomes or negative?

Not sure what in my answer was fear mongering or skepticism.

I was referring to the general narrative in this thread that focused on criticism without mentioning why this particular method would not work, not to what you wrote above.

 

[Andryr]

James' severe ME/CFS recovery story

Had 2 episodes - one as a child another as an adult.
1) been properly diagnosed with ME/CFS?
No
1.1) If not, how were they diagnosed?
Self-diagnosed
1.2) If not, do they seem to understand what ME/CFS is?
Probably YES
2) symptoms
as a child:
chronic fatigue, complete body shutdown, unable to walk 3 years, bedbound 2 years, sometimes lacking energy to eat.
As an adult: unable to work, but he was able to stop before the severe phase.
3) What are they describing as a recovery?
Although the video is called a recovery story, James does not claim he 100% recovered.
4) what did not help:
As an adult - pacing, CBT, GET, supplements, acupuncture, meditation, somatic stuff
5) helped temporarily:
As an adult - breath technique, brain retraining:
DNRS
Lightning process
Cathleen King
6) what helped:
as a child - pacing (but it did not work for him as an adult)
As an adult -
Adjusting steps from various brain retraining programs to himself
Changing neural system patterns from depleting to healing
Downshifting
Diet
8) Are the things they describe as causing recovery:
8.1) plausible? Yes
8.2) not plausible? No
8.3) potentially dangerous? James: "Brain retraining programs may be quite prescriptive..." and it may generate even more stress.
*Added what @Husband of suggested
9. Do they mention a purchasable programme?
Yes, see the video description.
10. Is there any evidence, eg extensive commenting by the YouTube user account on other videos, or they give their full name and you can find them in Facebook.
Facebook link in the video description.

Cons: no diagnosis, not 100% recovered
Pros: sounds honest
My 2 cents: This guy, as many others, has his own brain retraining program. I don't really like the fact those who recover start their own programs. If brain retraining works it implicitly puts the blame on the patient. We cannot fix a bone fracture neither a gut infection with brain retraining. On the other hand, there are still some issues keeping him from claiming himself as fully recovered.

 

[Husband of]

Some things you can add
9. Do they mention a purchasable programme?
10. Is there any evidence, eg extensive commenting by the YouTube user account on other videos, or they give their full name and you can find them in Facebook.

 

[Andryr]

Miguels' severe ME/CFS recovery story

1) been properly diagnosed with ME/CFS?
Probably NO, very few details though
1.1) If not, how were they diagnosed?
no info
1.2) If not, do they seem to understand what ME/CFS is?
no info
2) symptoms
chronic fatigue, chronic pain, bed-bound, tube-fed, stressed, anxiety
3) What are they describing as a recovery?
---
4) what did not help:
supplements, some IV meds
5) helped temporarily:
anti-depressants, anti-anxiety meds
6) what helped:
Brain retraining (? surprise!!)
8) Are the things they describe as causing recovery:
8.1) plausible? Who knows
8.2) not plausible? see 8.1
8.3) potentially dangerous? for your wallet
9. Do they mention a purchasable programme?
He has his own channel called CFS Recovery and his own website and a program.
10. Is there any evidence, eg extensive commenting by the YouTube user account on other videos, or they give their full name and you can find them in Facebook.
There are comments under videos on his channel.

Cons: few details
Pros: some pictures
My 2 cents: Everybody on this YouTube channel seems to recover from brain retraining. I wonder if there is a special kind of CFS - brain-retraining-curable-CFS. I guess those who benefit from brain retraining are generally healthy people having a failed feedback system which causes them pushing themselves off their limits. Once they fit back in their limits with retraining they have their energy equilibrium back and voila you have recovered.
Although the video is almost an hour long it lacks details. This guy has his own channel and a website and ...drumroll... a brain retraining course!! And he charges somewhere in between $1k-$4k range.
Sorry, I didn't like this video.

 

[Alvin2]

Don't overthink this, brain retraining is load of BS.
These might be fake testimonials or even paid, or these people don't have ME at all.
I don't really care which it is, its garbage.

 

[Alvin2]

We can use some systems thinking to debunk this.
ME is disease of the immune system based on all available evidence.

"Retraining" your brain will not fix immune dysfunction.
If this kind of smoke and mirrors fixed immune system dysfunction then covid would be treated and cured by training your brain and not pharmaceuticals...
Not to mention the flu, colds, MS, Lupus, arthritis and more.

 

[Husband of]

Miguels' severe ME/CFS recovery story

1) been properly diagnosed with ME/CFS?
Probably NO, very few details though
1.1) If not, how were they diagnosed?
no info
1.2) If not, do they seem to understand what ME/CFS is?
no info
2) symptoms
chronic fatigue, chronic pain, bed-bound, tube-fed, stressed, anxiety
3) What are they describing as a recovery?
---
4) what did not help:
supplements, some IV meds
5) helped temporarily:
anti-depressants, anti-anxiety meds
6) what helped:
Brain retraining (? surprise!!)
8) Are the things they describe as causing recovery:
8.1) plausible? Who knows
8.2) not plausible? see 8.1
8.3) potentially dangerous? for your wallet
9. Do they mention a purchasable programme?
He has his own channel called CFS Recovery and his own website and a program.
10. Is there any evidence, eg extensive commenting by the YouTube user account on other videos, or they give their full name and you can find them in Facebook.
There are comments under videos on his channel.

Cons: few details
Pros: some pictures
My 2 cents: Everybody on this YouTube channel seems to recover from brain retraining. I wonder if there is a special kind of CFS - brain-retraining-curable-CFS. I guess those who benefit from brain retraining are generally healthy people having a failed feedback system which causes them pushing themselves off their limits. Once they fit back in their limits with retraining they have their energy equilibrium back and voila you have recovered.
Although the video is almost an hour long it lacks details. This guy has his own channel and a website and ...drumroll... a brain retraining course!! And he charges somewhere in between $1k-$4k range.
Sorry, I didn't like this video.

Haven't watched the videos, but
For purpose of having a diverse range of stories, next time pick one that isn't presented by the same woman, who likely has interest in a specific type of approach.
And, I hope your assessment of 'is it dangerous' considers that any technique designed to get people to ignore their symptoms or push through them, is dangerous.

cheers

 

[Alvin2]

And, I hope your assessment of 'is it dangerous' considers that any technique designed to get people to ignore their symptoms or push through them, is dangerous.

Tis true, homeopathy is not dangerous, but using it plus forgoing legitimate treatment can be deadly.

 

[Husband of]

Tis true, homeopathy is not dangerous, but using it plus forgoing legitimate treatment can be deadly.

Yes, and activity levels greater than what one can handle have been shown to reduce peoples baselines permanently

 

[Artemisia]

I watched a recovery story on the same Youtube channel of a young woman who recovered by distancing herself from her abusive parents. She was housebound in her parents' house, and started by decluttering clothes forced on her by her parents, then Ayurvedic diet helped, then she moved out and recovered.

Another young woman on Instagram 'recovered from ME/CFS' by GET and eating more (she obviously to me had an eating disorder and wasn't eating enough).

I've seen several recovery stories and they often seem to be suffering from something they can remedy, like an eating disorder or abusive living situation.

That said I still have hope some people can recover from what I'd consider true ME/CFS with brain retraining, but I have yet to see anything totally convincing. I have an open mind though.

None of these people ever address my question which is what if you don't have energy to 'do what brings you joy'. I didn't get sick because I wasn't doing enjoyable activities. I got sick and had to gradually cut out enjoyable activities so I could direct energy to survival.

 

[lyran]

None of these people ever address my question which is what if you don't have energy to 'do what brings you joy'. I didn't get sick because I wasn't doing enjoyable activities. I got sick and had to gradually cut out enjoyable activities so I could direct energy to survival.

I think this differentiates physical illness from psychosomatic condition. When it's psychosomatic, you may get better or even be cured by doing things that bring you joy.

Most of them may have CFS-diagnosis but probably were suffering from something else.

 

[wabi-sabi]

I've seen several recovery stories and they often seem to be suffering from something they can remedy, like an eating disorder or abusive living situation.

Yup. Mental illnesses are very powerful and horrible. Some of them affect the body too, not just the mind.

I think a lot about how to differentiate physical from mental illnesses and I haven't come up with any coherent answers yet. I tend to take the pragmatic route. Did a mental intervention fix the problem? Probably a mental illness then. Did a physical intervention fix the problem? Probably a physical illness then.

I try to read about this, but there's so frustratingly little reading I can do these days.

 

[Alvin2]

Yup. Mental illnesses are very powerful and horrible. Some of them affect the body too, not just the mind.

I think a lot about how to differentiate physical from mental illnesses and I haven't come up with any coherent answers yet. I tend to take the pragmatic route. Did a mental intervention fix the problem? Probably a mental illness then. Did a physical intervention fix the problem? Probably a physical illness then.

I try to read about this, but there's so frustratingly little reading I can do these days.

One ME/CFS specialist said they differentiate us from depressed patients by asking patients what they would do if they were cured tomorrow. The ME patients always have ideas and plans, the depressed patients say i don't know.

 

[hapl808]

One ME/CFS specialist said they differentiate us from depressed patients by asking patients what they would do if they were cured tomorrow. The ME patients always have ideas and plans, the depressed patients say i don't know.

Always liked this approach. Interventions don't tell the story. Drugs don't have narrow effects. People think antidepressants make you less depressed. We have very little idea what they do. Maybe change how serotonin is process, maybe an S1R agonist, and a myriad of other effects. That's why repurposed drugs could hold so much promise, but sadly so little profit, so…

Friends I've had over the years who truly seemed depressed - nothing in their life would change their outlook. They might have good days or bad or be fun or not - but when you asked them about life, they were always miserable. They could start dating the best partner or get the best job, and they'd have some reason that none of it mattered. Maybe just my own experience with friends, but I found that seemed drastically different than my own 'sadness' which usually was connected to events. Meet a cool potential partner - happy. Get rejected - sad. Travel to a new city - happy. Get bored in the new city - sad.

I think a lot about how to differentiate physical from mental illnesses and I haven't come up with any coherent answers yet.

In the end, psychiatrists and psychologists have no reliable way to differentiate either, so you're in good company. Hell, Johns Hopkins just got hit with a $250m verdict because their medical 'diagnosis' was so horribly skewed and harmful.

 

[wabi-sabi]

Interventions don't tell the story.

Can you give me some examples? I need disconfirmatory evidence for my theory.

Maybe just my own experience with friends, but I found that seemed drastically different than my own 'sadness' which usually was connected to events.

I think this is an important distinction between sadness and depression. Depression is that cloud cover that never goes away, where normal emotions fluctuate. Unless you feel your sadness was inappropriate to the situation?

Hell, Johns Hopkins just got hit with a $250m verdict because their medical 'diagnosis' was so horribly skewed and harmful.

What happened? I need this good gossip!

 

[hapl808]

Can you give me some examples? I need disconfirmatory evidence for my theory.

Let's say you get sick.

Let's say you take Ivermectin and get better. Ivermectin is an anti-parasitic. Does that mean you had a parasite? No, it could mean all sorts of things because lots of drugs have lots of effects.

Let's say you take Zithro and get better? Zithro is an antibiotic. Does that mean you had a bacterial infection? No, it could mean you had inflammation (Zithro is an anti-inflammatory) or many other mechanisms could be involved, as we're still learning about its effects.

I think this is an important distinction between sadness and depression. Depression is that cloud cover that never goes away, where normal emotions fluctuate. Unless you feel your sadness was inappropriate to the situation?

Exactly.

What happened? I need this good gossip!

https://www.thecut.com/2023/11/take-care-of-maya-kowalski-verdict.html

 

[RupertBear]

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.

 

[southwestforests]

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.

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

So both of their families have reorganized their lives and spent thousands of dollars to enroll in intensive after-school “brain training” programs that offer the promise of permanent changes to the human mind.

The programs are part of a fast-growing industry that’s based on the premise that targeted games and exercises can rewire the brain to boost memory, sharpen thinking or decrease the challenges associated with anxiety, autism, ADHD and other disorders. Brick-and-mortar training centers like Brain Balance Achievement Centers, which Izak attends, and LearningRx, Kyle’s program, are just one piece of a $2 billion global brain technology market that is increasingly going around the medical industry and marketing directly to consumers.

But the premise behind the programs has faced significant criticism from doctors and scientists who warn that some are making dubious claims. These personalized programs can cost $12,000 or more for six months of training, three days a week. Families have gone into debt or turned to crowdfunding sites to pay for them.

“They’re selling hope,” said Eric Rossen, the director of professional development and standards for the National Association of School Psychologists. “These organizations are not necessarily predatory, but they are definitely there and almost chasing the parents who are desperate, who are overwhelmed and who feel that they have no recourse.”