CFS recovery success stories on YouTube

[Alvin2]

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.

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.

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.

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.

 

[Viala]

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.

I don't think such therapy is simple. It is defintiely more complicated than taking some wonder drug. You cannot disprove it doesn't work and they say it helped some people. Without disproving, there is no point in discrediting. I get that you don't like this method and don't agree with it, but what if it could help some people here?

I've seen it in many threads here and honestly, I would prefer focusing on the method and learning about it, but it is not possible if the idea is attacked itself.

 

[Andryr]

Again, let's not fight. It was just the 1s review. I guess there will be more contradiction.

Finally those who are depressed are often misdiagnosed with ME/CFS. Exercise works for depressed patients.

It would have been easier it that guy had visited a psychiatrist.
Every other doctor thinks we are nuts. I got bored of that and visited a psychiatrist who told me I have no depression. Now I have a paper which claims I am not nuts.

 

[Alvin2]

Again, let's not fight. It was just the 1s review. I guess there will be more contradiction.

It would have been easier it that guy had visited a psychiatrist.
Every other doctor thinks we are nuts. I got bored of that and visited a psychiatrist who told me I have no depression. Now I have a paper I am not nuts.

I have read many accounts from people who have rare diseases and they often get disbelief or claims there is nothing wrong with them or treatments for the wrong thing or told they are imagining it and so forth.
There are two medical mystery columns i found interesting, one from the NYTimes and one from the Washington Post. if you can get past the paywalls they make for fascinating reading.
Often they are rare conditions or the right test wasn't done or they are genetic where they could not have even been diagnosed decades ago before genetic testing existed.

Retraining doctors to know more about ME/CFS is a tall ask but it can be done. But even if doctors don't stop misdiagnosing patients it doesn't legitimize ridiculous "cures".

 

[Viala]

Again, let's not fight. It was just the 1s review. I guess there will be more contradiction.

It's not about fighting, it's the fact that some therapies are heavily criticized here, so technically you cannot talk about them here freely without being attacked. Funny, since the science doesn't have any answers yet. I understand logical arguments and scientific approach, ridicule is not scientific, that's why it's sus.

 

[hapl808]

As I've said, I think whatever method people used - good for them. Until we understand ME/CFS better, we really can't say anything definitive about anything. We've seen the same even for more obvious disorders like ulcers where the 'science' changes every decade.

I'm happy to try things based on my own risk/reward calculation. Sometimes I've been wrong (on all the physical therapy recommended over the years that probably did more damage than good), sometimes I've been correct that it did no harm but no apparent good (DNRS, Medical Medium, carnivore diet, etc), sometimes I've gotten some benefits at least in the short term (antibiotics, TCM, etc).

To each their own.

What I don't like about that Nick recovery story thumbnail is the, "I know it can work for others." This is supposed to be positive thinking, but it quickly can veer into victim blaming. There's an implication if it doesn't work for you, then you're doing it wrong.

I really don't care about the method, I'd just like anything that gives me better quality of life. Medical Medium looked silly to me, but it helped a good friend so I gave it a chance, bought wild blueberries and cilantro or whatever it was, asked angels for something or other, etc. I found it did nothing for me, so on to the next experiment. If it helps some people, that's great for them. Of course, I wish it had helped me.

I think the best attitude is don't judge others, but I will push back on them judging me for not succeeding with their treatment.

My own simple philosophy.

 

[Wishful]

I think it can be harmful though to discredit a therapy based on our sole perception of which methods can work,

I think there's a difference between active discrediting and pointing out flaws in a treatment. Imagine if the claim was that "watching moss grow will cure ME", and that came with some number of anecdotal claims of it working. There's no easy way to disprove that (requires long-term large studies done properly). Saying that it can't possibly help a PWME is wrong, since just sitting quietly has biological and psychological effects. Pointing out that anecdotal evidence is very weak and that there's no theoretical basis for watching moss having an effect (more than watching anything else for that length of time) is reasonable, and suggesting that spending $399.99 for the book/video/moss spores kit is likely just a waste, seems reasonable to me. Scamming is a crime, and limiting the number of victims is good for society. What's the probability that pointing out the flaws will prevent someone from actually benefiting from it? My guess is that it's approaching zero, and that they are more likely to benefit from that $399.99 spent otherwise.

I still think that schools should have mandatory lessons in rational thinking and the methods scammers (and advertisers) use/abuse. Much more useful than memorizing the names of past vice-president's dogs, or whatever is taught because it's easy to teach/test.

 

[Viala]

There is zero information in that criticism.

I will gladly talk about ANS rewire to get to know what it is or to get to know the stories of people who say it helped them.

 

[wabi-sabi]

*Questions are based on @wabi-sabi questionnaire.

Hey, I'm glad you found this helpful!

Here are some other thoughts.

1) If you have a chronic illness it's very important to be able to calm down your nervous system and get some rest. Things you mentioned like self-compassion can help on this.
2) It's very important to monitor our symptoms so you know when you are overdoing and can stop and rest. Being present can help on this.
3) when we put these two together, it's important to be able to monitor symptoms calmly, so you don't have a freak out about being sick, since the emotional upset will make you sicker.

Here's the potential danger part I might not have explained well before:

Unscrupulous programs will try to get you to calm down about your symptoms by telling you they are not important (since you are not really sick) or even that your freak out about being sick is causing the illness or is the illness. These are various was that that they will try to tell you that 1) the sickness is your fault because you thought the wrong thoughts 2) if you think the right thoughts your illness will go away.

When you have a serious illness like ME/CFS, diabetes, MS, whatever, pretending you don't have it is very dangerous because it means you won't take care of yourself and the disease. Then your disease will get worse.

How to stay safe: do something that calms your system, but doesn't tell you (or even hint) that that some kind of fancy thinking will make the disease go away or that you can ignore the symptoms. For you, this might be a combo of self-compassion and being present.

You noticed that this helped your pain, but not your fatigue, yes?. You wanted your recovery to be no pain and no fatigue. I would say that this stuff helped your symptoms, but did not make you recover, since your fatigue did not go away.

 

[wabi-sabi]

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.

Yep, this is exactly the problem!

I suspect (no evidence, so this is a guess) that people with depression can get misdiagnosed or misdiagnose themselves with ME/CFS. Because when you say fatigue, or tired, or low energy or whatever, what does that really mean? Does cancer fatigue (which I hear is pretty bad) feel like ME/CFS fatigue? I've no idea, because thankfully I've never had cancer.

That's why we so badly need objective tests and biomarkers of what is going on inside us. For example, my "brain fog" (I hate that word!) from POTS feels exactly the same as brain fog from low blood sugar. For years I thought I had low blood sugar when I didn't. Then I got my sugar tested- it was fine! And I got POTS treatment and the brain fog got better! Sadly not gone, just better. Our feelings are important, but they aren't enough to make a diagnosis all on their own.

 

[hapl808]

Unscrupulous programs will try to get you to calm down about your symptoms by telling you they are not important (since you are not really sick) or even that your freak out about being sick is causing the illness or is the illness. These are various was that that they will try to tell you that 1) the sickness is your fault because you thought the wrong thoughts 2) if you think the right thoughts your illness will go away.

This is exactly my complaint and concern. As intelligent as I thought I was, I did this for years. I refused to accept that I would be so limited by my physical frailty - connective tissue disorder, ME/CFS, etc. I pushed through, did physical therapy extensively, wore braces and kept active, etc.

I believed that 'limiting beliefs' were holding back the more severely chronically ill people, and I felt that their own symptoms were so bad because they couldn't adopt the right mindset to push through. This damaged me badly because by refusing to accept so-called limiting beliefs, I pushed myself way to hard and over the years went from mild-moderate down to moderate, then down to moderate-severe and closer to just severe.

If I had accepted that I wasn't going to find any magic treatment and to just rest and treat the obvious symptoms and never try to push through, I'd probably still be mild-moderate and have a bit of a life.

There is zero information in that criticism.

I will gladly talk about ANS rewire to get to know what it is or to get to know the stories of people who say it helped them.

Every friend has a doctor they think I should see, a treatment or diet they swear would help me, a belief that if I just got a 'real' diagnosis that everything would change, etc.

So there's emotion (on all sides) because this is a very traumatizing condition with no reliable treatments in the world and we're all doing the equivalent of trying to cure a brain tumor in 100 BC with some herbal teas and rain dances.

I was totally willing to try DNRS (Gupta in my case) and listen to hours of video testimonials (that's a requirement) and do the various steps (to the degree I could because I am unable to stand). Anything that works is a godsend, and with how little we know about ME/CFS, I don't rule anything out since 'medicine' knows nothing. But I also understand why people are skeptical of some things, especially when they are expensive.

If a treatment helped me, I really wouldn't care if people were skeptical. That's what I don't get when someone here has a treatment that works, but they seem immensely frustrated that others won't do it, or didn't do it right, or didn't get benefits. I don't want validation or acceptance, I just want better health. That's it.

 

[wabi-sabi]

it probably didn't make her a whole lot worse to be active with coeliacs rather than bedbound, so it wasn't dangerous.

OK, let me fully admit up front that I am beating a dead horse, but:

1) Untreated celiac will cause very bad things like like other autoimmune disease or neurologic problems. See celiac.org. That's even if you don't have GI symptoms and even if the lightening decreases your GI pain.

2) Doing lightening process slowed down her diagnosis and treatment of celiac. This means it increased her risks for bad, long term consequences of untreated real disease.

3) Dead horse time: That's why these programs are dangerous if you have a real and dangerous disease. Anything that encourages you ignore serious symptoms is going to have serious consequences.

 

[wabi-sabi]

So there's emotion (on all sides) because this is a very traumatizing condition with no reliable treatments in the world and we're all doing the equivalent of trying to cure a brain tumor in 100 BC with some herbal teas and rain dances.

This hits the spot and I love the analogy.

As much as there are no cures availible yet, I am also so grateful that I have ME/CFS in the 21st century when there are people like Dr. Davis who are working on it and the technology exists to do it. There's a new video of Ron and Janet where they are explaining how they can race neutrophils on some special surface and that our neutrophils move more slowly than healthy people's. It's fascinating.

I've tried all the teas. I can't dance anymore. Beam me to the furture for my high tech cure!

 

[Viala]

So I'm sorry you feel gaslighted - certainly not my intention. I was totally willing to try DNRS (Gupta in my case) and listen to hours of video testimonials (that's a requirement) and do the various steps (to the degree I could because I am unable to stand). Anything that works is a godsend, and with how little we know about ME/CFS, I don't rule anything out since 'medicine' knows nothing. But I also understand why people are skeptical of some things, especially when they are expensive

That's why I'd prefer to focus on this method here, maybe I'd learn something useful.

 

[hapl808]

Hipothetically, what if the author of some really breakthrough therapy that worked, said it can help you if you listened?

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.

 

[Andryr]

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.

 

[Alvin2]

Well... I have begun to regret I started this thread.

No need for regrets.

 

[Husband of]

OK, let me fully admit up front that I am beating a dead horse, but:

1) Untreated celiac will cause very bad things like like other autoimmune disease or neurologic problems. See celiac.org. That's even if you don't have GI symptoms and even if the lightening decreases your GI pain.

2) Doing lightening process slowed down her diagnosis and treatment of celiac. This means it increased her risks for bad, long term consequences of untreated real disease.

3) Dead horse time: That's why these programs are dangerous if you have a real and dangerous disease. Anything that encourages you ignore serious symptoms is going to have serious consequences.

oh indeed, Very good points, you are right.

The less important point I was trying to make is that even if the lightning process or similar can help people with some physical ailments, doesn't mean it isn't dangerous for MECFS.

f you don't keep beating the horse, some people might not realise it's dead.

 

[Husband of]

Yep, this is exactly the problem!

I suspect (no evidence, so this is a guess) that people with depression can get misdiagnosed or misdiagnose themselves with ME/CFS. Because when you say fatigue, or tired, or low energy or whatever, what does that really mean? Does cancer fatigue (which I hear is pretty bad) feel like ME/CFS fatigue? I've no idea, because thankfully I've never had cancer.

That's why we so badly need objective tests and biomarkers of what is going on inside us. For example, my "brain fog" (I hate that word!) from POTS feels exactly the same as brain fog from low blood sugar. For years I thought I had low blood sugar when I didn't. Then I got my sugar tested- it was fine! And I got POTS treatment and the brain fog got better! Sadly not gone, just better. Our feelings are important, but they aren't enough to make a diagnosis all on their own.

And while Brian fog from pots and from low blood pressure may feel exactly the same, brain fog from anxiety can feel very different n which case not only is the cause different but so is the actual experience. Still both can be described as brain fog because in both instances there is impeded memory recall and ability to focus, lack of clarity etc.

 

[wabi-sabi]

brain fog from anxiety can feel very different

This is why I hate the words brain fog. We need better descriptors.