CFS recovery success stories on YouTube

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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.
 
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wabi-sabi

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I know few of those sufferers, if any, were diagnosed with CFS
That's really the issue... If we don't know if a person has ME/CFS, then we can't usefully get data from what they say. I sure don't have the time or energy to go down random rabbit holes searching for cures on youtube. You can waste a whole lot of hope that way, not to mention money.

Also, we need to know what they mean by recover. There's been threads even here on PR where people mean different things by recover ranging from feeling better for a few hours to learning how to pace to manage symptoms. Without having a firm definition, we're using a whole lot of energy.

It's even worse than searching for the needle in the haystack. It's being in the wrong barnyard before you even start to find a haystack.

I've been seeing more of these types of videos pop up too. I'm wondering why it's happening.

So when you see those videos, here are a few questions to ask:

1) Has this person been properly diagnosed with ME/CFS?
2) If not, how were they diagnosed?
3) If not, do they seem to understand what ME/CFS is? Or do they think it's generic chronic fatigue?

4) What are they describing as a recovery?
5) Is it what you would want as recovery?

6) Are the things they describe as causing recovery plausible? Ex: I learned to PACE and I take medication for POTS.
Seven) Are the things they describe as causing recovery not plausible? Ex. I did CBT and GET or I bought some proprietary program that won't give any details until after you've paid.
8) Are the things they describe as causing recovery potentially dangerous? Ex: You would call poison control if your child did them.
 

Replenished

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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.
The videos promoting ANS rewire / brain training programs etc do appear to be genuine recovery stories though. Lot's of people do seem to recover using those programs even if we say they didn't really have M.E./CFS, who's to say who does or doesn't have it, it's just a list of symptoms used for diagnosis at the end of the day and going by that measure the people in those recovery stories had the condition.

I think the overall take from such videos is that it tends to be a holistic approach with many factors leading towards recovery over a period of time, rather than a quick fix or magic bullet cure. To be fair to Dan Neuffer the guy who created ANS rewire, he does recovery videos with people who have recovered through various means and not just his program. With some of those in the videos having not even done his program.

I think brain training programs are useful alongside a whole host of other treatments.
 
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Alvin2

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I am interested in hearing about those who recovered and how becasue someone might stumble onto something useful. Its a headache to filter out the junk but its necessary if we are to allow for someone finding something useful.
 
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Hey folks we have too little energy. Let's not start a holy war because of ANS rewire. It was just an example. As long as it helps somebody I am OK with it.
 

hapl808

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Yep, I'm fine with whatever works for someone, as long as they don't claim it will work for everyone. But when people tell me that if I do whatever thing 'right' it'll work, then that's annoying and veers into victim blaming. Until you really can cure people, I hate that sort of message.

As for DNRS, I did the Gupta version and haven't really looked at many others. It didn't really seem to do anything for me - I tried for a few months. Seemed kinda like a meditation mantra, but less effective?

One issue with Gupta is you have to watch hours of videos of 'recovered' people, which seems more like brainwashing. They don't really give you much info, just talk about how great their recovery has been with weak soft voices and the vibe that they might run off into the brush if spooked. These are the recovered people? I can look and sound better while being relatively severe (I'll just be in bed for a week after my ten minute performance). If that's what they think healthy looks like, they've got some additional problems.

I've used it before, but I like @Wishful approach - here's the thing that worked for me, hopefully it helps someone else but no clue if it will. That's all anyone can say. It's weird when someone tries something and it heals them, and they assume that it will work for EVERYONE and if it doesn't, then that person is at fault and did it wrong. Like people who recommend we see their doctor, then when that doctor can't help us the person gets annoyed at us - like we did something wrong by taking their advice and then having the audacity to not improve.
 
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hapl808

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To further that, I think watching videos of success stories could be great for any mental component? I don't really know, but I imagine certain types of brainwashing could be effective in helping people with limiting beliefs. Unfortunately I think there's a stark difference between those who are 'afraid' to exercise because of OCD or GAD, versus those who continually tried to exercise and crashed and eventually figured out their own cause and effect cycle.

(By the way, based on nothing but gut feeling from watching hours of people talk, all the Gupta candidates seemed like they were suffering from horrible generalized anxiety disorder. Their tentativeness, obvious discomfort despite a very kind interviewer, etc - just got that feeling. I wonder if that's who is most helped by DNRS?)
 

hapl808

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And in case I didn't post enough in a row, I'm not saying that OCD or GAD is any less serious or easier to fix. As far as I've seen, both can only generally be managed and our medication and psychological treatments are rudimentary at best. This is the challenge with ME/CFS - mental challenges are a serious thing and millions suffer from them, but in my own experience I don't really think ME/CFS has much connection with mental disorders.

Okay, that's my rant for the day.
 

wabi-sabi

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Okay, that's my rant for the day.
You do such good rants @hapl808! I'm always happy to read them.

I would add to your rant that when recommending or discussing treatments, we need to keep safety in mind for ourselves and our fellow sojourners in illness. Something like DNRS or Gupta or lightening process has been used to the active harm of ME/CFS peeps. It goes beyond taking an honest approach of "Hey here's what worked for me. Maybe it will work for you and maybe it won't". I would describe these type of treatment as telling a diabetic to eat a pound of sugar everyday and don't worry about it because it can't possibly harm them (since you know, diabetes like ME/CFS is all in how you think about it). These treatments are, as you say, a type of brainwashing.

(By the way, based on nothing but gut feeling from watching hours of people talk, all the Gupta candidates seemed like they were suffering from horrible generalized anxiety disorder. Their tentativeness, obvious discomfort despite a very kind interviewer, etc - just got that feeling. I wonder if that's who is most helped by DNRS?)
Your guts agree with mine. Of course, that makes me concerned that people with serious mental illness are also getting brainwashing instead of real and appropriate counseling, therapy, medication etc.
 
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Ok, here we go. Before we start please keep in mind some things:
1. I have not been properly diagnosed with CFS/ME. There are no doctors who can assign the CFS diagnosis near me. Doctors near me are puzzled by my simptoms. I mostly fit into ICC criteria.
2. Things we will hear in those recovery stories may be a sort of insult to somebody properly diagnosed years ago. I don't mean to hurt anyone, just trying to get some new info.
3. I am not a native English speaker so I could miss something. Don't hesitate to let me know.
 

Viala

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I think we should respect other people's experiences. If they were not officially diagnosed with CFS, it doesn't mean they didn't have it. Loads of people cannot get official diagnosis even if they have all the symptoms.

If they claim that they have a cure for everyone, it only means they're overconfident, but it doesn't mean that their method doesn't work. It may work for some people.

Saying something is garbage is basically the same thing that doctors do to us. CFS is not real, you're hysterical. This method cannot work, it's brainwashing. Gee, I am interested in any method that may work even if current science doesn't understand it, as long as it helps.
 

Husband of

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I agree with others to be careful of dangerous methods. I would note the original poster child for the lightning protocol turned out to have coeliacs disease; lightning "worked" for her, took her from bed bound, but when she found out she had coeliacs and removed gluten she was so happy that she no longer had to "fake it til she made it".

Shows the power of the mind, but Unlike with MECFS or diabetes, it probably didn't make her a whole lot worse to be active with coeliacs rather than bedbound, so it wasn't dangerous.

Am definitely interested in recovery stories, I just find it very hard to believe they are genuine most of the time. Like on recovery Norway all the stories follow the same script.

i also commonly hear that people have spontaneous remissions from MECFS; but is that even true? I don't have the evidence.

and I do think that people are dealing with different issues and often just think they have the same symptoms. This is a problem with language and symtpoms descriptions. Fatigue is not fatigue is fatigue . Brain fog is not brain fog is not Brian fog. Even pem; I can see someone with depression thinking they have pem.

i read a shocking article from 1989 that really pissed me off because it made conclusions about MECFS being psychosomatic based on some logic that was completely dependent on the assumption that a symptom description experienced across different diseases was one hundred percent definitely the same thing, it never challenged that ridiculously obvious flaw in the "study". And I thought whoever wrote this needs to consult a psychologist so they can tell them that, even though they have different experiences, two people can describe something the same way, especially if prompted (asked if that description applies to them) or otherwise that description is readily available in the language or the language usage in society, .. Then I saw the author was Simon wesselly. Turns out psychologists are bad at psychology
 
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Alvin2

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I think we should respect other people's experiences. If they were not officially diagnosed with CFS, it doesn't mean they didn't have it. Loads of people cannot get official diagnosis even if they have all the symptoms.

If they claim that they have a cure for everyone, it only means they're overconfident, but it doesn't mean that their method doesn't work. It may work for some people.

Saying something is garbage is basically the same thing that doctors do to us. CFS is not real, you're hysterical. This method cannot work, it's brainwashing. Gee, I am interested in any method that may work even if current science doesn't understand it, as long as it helps.
I agree with you to a point but giving a pass encourages more fraud and it screw patients that have ME/CFS and make themselves worse on these scams.
 
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Husband of

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I've experienced what could be described as brain fog in the following situations
With a virus
Afternoon slump
Acute stress
Chronic stress
Anxiety
Depression
Anger
Too much caffeine
Various Different drugs
Sex
Embarassment
Allergies
Chemical sensitivty
Motion sickness
Herxheimer reaction
Earworms
Tiredness
Overtiredness
Antidepressant withdrawal
Etc

all of these experiences were different
 
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Nick's ME/CFS recovery story
1) been properly diagnosed with ME/CFS?
Probably NOT
1.1) If not, how were they diagnosed?
Probably self-diagnosed
1.2) If not, do they seem to understand what ME/CFS is?
Probably not
2) symptoms:
chronic fatigue, pain, insomnia, migraines
3) What are they describing as a recovery?
No chronic fatigue or pain
4) what did not help:
pills, exercise, massage
6) helped temporarily:
naturopath, alchohol
7) what helped:
John Sarno "Healing back pain" book, mind-body coaching, somatic tracking, self compassion, being present.
8) Are the things they describe as causing recovery:
8.1) plausible? Yes for given symptoms
8.2) not plausible? No
8.3) potentially dangerous? No

Summary:
Cons: few symptoms, no official diagnosis, no background
Pros: full recovery, no hidden fees, this guy seems to be honest and sincere
 
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*Questions are based on @wabi-sabi questionnaire.
Some time ago I tried to follow a guide based on Sarno's book. But I could not apply the guide for pain to my fatigue.
 

Alvin2

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7) what helped:
John Sarno "Healing back pain" book, mind-body coaching, somatic tracking, self compassion, being present.
Reminds me of chiropractic and the power of positive thinking...

That said both are reasonable for their actual indications.
Chiropractors can help with muscle and joint pain.

Positive thinking can help if your cynical and miserable.
But neither will cure ME/CFS.

And i say this as someone who goes to a chiropractor, it helps my back pain, my knee pain and some peripheral issues. But no ME/CFS effect despite the claims it had made for over 100 years that it can treat everything from seizures to asthma and much more.
 

Viala

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I agree with you to a point but giving a pass encourages more fraud and it screw patients that have ME/CFS and make themselves worse on these scams.
And I agree with that, to a point. There are scam therapies, there is no doubt about it. But I have found some things that are helpful and do work, even when the official science says they shouldn't. The same science says often that CFS doesn't exist.

So I am more careful not to throw the baby out with the bathwater anymore, and I've seen it happen here sometimes when there is a disagreement about the method used, especially if the method is not strongly backed by science, but again, CFS is also not strongly backed by science. As long as the method isn't harmful, I say it is worth a try or at least to learn what it is, and maybe accept that it helped some people. I think it can be harmful though to discredit a therapy based on our sole perception of which methods can work, and which can't, unless of course there is a clear evidence that the therapy is harmful, like GET.
 
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Positive thinking can help if your cynical and miserable.
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.