Honestly, because none of you can prove it—if by it, you mean a cure. People come here and want the glory and none of the responsibilities that come with announcing to a lot of people what worked for you—things you cannot prove nor have been independently verified. If you want the glory of scientific breakthrough, expect the scrutiny of it. You have NO WAY of confirming of what you did actually helped you. That is a huge hurdle to clear when self proclaiming I did “xyz.” Because there are no parameters to it. Recovery? Sure. Improvements happen all the time. People get 90-95% better. But a cure? You better come with something HARD. Recovery and cure ain’t the same thing. So you’re angry about a straw-man argument, basically. I look for recovery stories all the time. I’m *highly* skeptical of cures and fixes, though. Your argument lacks the real problem people have: snake oil bullshit, not “I got about 65% better, I attribute it to [insert things they’ve tried]”
\> Honestly, because none of you can prove it.
You're right. But let's assume for a moment that my hypothesis that this is a nervous system disorder is correct ( and I outlined why I believe this to be the case here: [https://www.reddit.com/r/cfs/comments/x2hfj7/comment/imjo2r2/?utm\_source=share&utm\_medium=web2x&context=3](https://www.reddit.com/r/cfs/comments/x2hfj7/comment/imjo2r2/?utm_source=share&utm_medium=web2x&context=3)) and that the appropriate treatment strategy is highly non-deterministic, difficult or impossible to properly measure, and perhaps even unfalsifiable.
If that's the case, isn't it likely that nothing will ever adequately meet the burden of scientific 'proof'? What if this is the very reason why Ron Davis and countless others have struggled fruitlessly for the equivalent of hundreds of human-years in search of an elusive holy grail? What if that's precisely why we can't find a diagnostic or even fully articulate the pathophysiology of CFS?
That was the epiphany I had in my own journey. A stark realization that the scientific community is almost guaranteed to fail at helping people understand and resolve CFS for many more years. That was how I knew I had to find a way out on my own.
\> If you want the glory of scientific breakthrough
That's not my motivation at all nor would any such claim be accurate given that all I did was synthesize across the existing body of literature, stories, etc.
\> Recovery and cure ain’t the same thing...People get 90-95% better. But a cure? You better come with something HARD.
But this is true of most chronic illnesses and yet the distinction is irrelevant to the person who is "95% better" right? We use the word "cure", but the goal is to restore ourselves to a normal quality of life in a way that's sustained.
If your treatment isn’t falsifiable, then no one has to care at all. If it can’t even be tested, it’s basically worthless. Kromulent was much more polite than I am about this because I despise people who believe in something despite all evidence to the contrary. If you want to believe it—I will never stop you. If you want to make a claim—moreover, entirely unsupported ones (other than immeasurable and non noncontrolled anecdotes)—that extends to others—expect pushback. It’s kinda that simple for me.
Does anyone know why this got removed? Was going to reply to this thread but saw it got removed. Honestly had some great points worth discussing. u/rfugger
I'm the person who wrote the line that misled you, and I think it's only fair that I respond to your concern.
There are many treatments for CFS, and almost all of them work for a small number of people. There are people who recover with diet changes, with various combinations of potions and pills, with exercise and without exercise, and with things like the lightning process, which helped you. None of these things work for most people who try them; it is true that none are reliably effective. This does not mean that none will work for you.
I'm sorry you wasted time, and I wish you had found what you needed sooner.
The question of whether to ban or allow recovery stories is a genuinely complicated one, and I can see a good argument on all sides.
Just to clarify: I did not use the lightning process. It has elements that I believe are directionally correct, but it is not a good solution in its current form. I completely understand why some people are left worse off because of it and I explained in detail why I believe that's the case in the linked comment at the bottom of the post (https://www.reddit.com/r/cfs/comments/x2hfj7/comment/imjo2r2/?utm\_source=share&utm\_medium=web2x&context=3).
And I think you inadvertently pointed out precisely why no one has formulated an effective treatment strategy: the methods used are at best scattershot. The reason for this, in my view, is that this disorder is for most people the result of a destabilized nervous system. There are in theory many possible pathways to get out of it because, at a very base level, the goal is to reset the nervous system back to a working state.
Sometimes the tactics can even be very simple. For example, Ron Davis reported in a recent interview that one of his graduate students was bedbound with CFS and hypothesized that she would recover if she avoided crashing. She did so and was better after a year.
I plan to write a lot more on the subject and in great detail. I'm still getting better and more of my vitality is returning with each passing day. I believe I see a way to frame CFS that will make sense to more people and help them design a way out for themselves. I fully intend to see that through since I'm confident this might help at least one other person here.
Thank you for apologizing.
There's any number of reasons why it's hard to find a satisfactory answer.
The first is that we may not be a heterogeneous group; there might be half a dozen different diseases that all happen to cause similar symptoms.
The second is that it is hard to do a meaningful evaluation of a potential treatment, so we rely on anecdotal evidence instead. Anecdotal evidence can be great, but it is often misleading; it is the nature of anecdotes that the most unusual claims will get repeated the loudest, and the critical details are often left behind. Anecdotes usually involve small numbers of individuals, not statistically-significant groups, and there is no control group, no objective criteria, none of the things that we know to be so terribly important in making good evaluations of this kind.
Third, we do not have an animal model, or even an objective test to measure the presence or absence of CFS on a human subject. We do know that many CFS people tend to score one way or another of various tests, but we are not the only people who score this way, and nobody can reliably pick us out of a crowd using blood work alone.
Finally, some of us just get spontaneously get better, and whatever we happened to be trying at the time usually gets the credit. We are not stable, and without a stable baseline, finding meaningful patterns can become impossible.
There are a lot of very different ideas about what might be behind this, and how to fix it. Each idea is backed by people who really believe in it, too.
And in the end, there is not one person here on earth - not yet, anyway - who can truthfully say, yes, this treatment is likely to help you, and likely to help the next person who comes in the door.
All of that is true and very well written.
But there is one profound flaw in your assessment: what if the treatment strategy requires sustained commitment to a process for some time in order to treat the issue at the neurological level and that process and its outcome are (1) inherently non-deterministic yet (2) additive, so that the likelihood of recovery approaches 100% as you stack up tactics and sustain your approach for some time, because what you're really attempting to do is recalibrate a destabilized nervous system?
Then recovery likelihood might roughly be modeled by an exponential distribution. Incidentally, this was **precisely** my experience. In fact, I even had a few false starts and ruts before I found a process that worked well for me and that I could remain committed to in spite of deficits in mood, willpower, discipline, etc.
Do you at least see how the way you're conceptualizing CFS might be catastrophic insofar as it could deter people from prosecuting what may be an effective strategy? People with CFS are already so disabled that it's easy to fall prey to escape hatches like "this might not work for you" or "you have a different kind of CFS". I fell prey to that myself. It was the path of least resistance.
But it's clear to me now in hindsight that this was a key barrier that needed to be overcome because (and this is really the crux of it): **it is impossible to know if a nervous system explanation is correct or such an approach will work for you unless you're able to stay committed to that for an extended period of time and test it**. This is a trap. It's also why the philosophy you're espousing, while perfectly reasonable, is going to harm many many more people, the same way it harmed me.
Honestly, because none of you can prove it—if by it, you mean a cure. People come here and want the glory and none of the responsibilities that come with announcing to a lot of people what worked for you—things you cannot prove nor have been independently verified. If you want the glory of scientific breakthrough, expect the scrutiny of it. You have NO WAY of confirming of what you did actually helped you. That is a huge hurdle to clear when self proclaiming I did “xyz.” Because there are no parameters to it. Recovery? Sure. Improvements happen all the time. People get 90-95% better. But a cure? You better come with something HARD. Recovery and cure ain’t the same thing. So you’re angry about a straw-man argument, basically. I look for recovery stories all the time. I’m *highly* skeptical of cures and fixes, though. Your argument lacks the real problem people have: snake oil bullshit, not “I got about 65% better, I attribute it to [insert things they’ve tried]”
\> Honestly, because none of you can prove it. You're right. But let's assume for a moment that my hypothesis that this is a nervous system disorder is correct ( and I outlined why I believe this to be the case here: [https://www.reddit.com/r/cfs/comments/x2hfj7/comment/imjo2r2/?utm\_source=share&utm\_medium=web2x&context=3](https://www.reddit.com/r/cfs/comments/x2hfj7/comment/imjo2r2/?utm_source=share&utm_medium=web2x&context=3)) and that the appropriate treatment strategy is highly non-deterministic, difficult or impossible to properly measure, and perhaps even unfalsifiable. If that's the case, isn't it likely that nothing will ever adequately meet the burden of scientific 'proof'? What if this is the very reason why Ron Davis and countless others have struggled fruitlessly for the equivalent of hundreds of human-years in search of an elusive holy grail? What if that's precisely why we can't find a diagnostic or even fully articulate the pathophysiology of CFS? That was the epiphany I had in my own journey. A stark realization that the scientific community is almost guaranteed to fail at helping people understand and resolve CFS for many more years. That was how I knew I had to find a way out on my own. \> If you want the glory of scientific breakthrough That's not my motivation at all nor would any such claim be accurate given that all I did was synthesize across the existing body of literature, stories, etc. \> Recovery and cure ain’t the same thing...People get 90-95% better. But a cure? You better come with something HARD. But this is true of most chronic illnesses and yet the distinction is irrelevant to the person who is "95% better" right? We use the word "cure", but the goal is to restore ourselves to a normal quality of life in a way that's sustained.
If your treatment isn’t falsifiable, then no one has to care at all. If it can’t even be tested, it’s basically worthless. Kromulent was much more polite than I am about this because I despise people who believe in something despite all evidence to the contrary. If you want to believe it—I will never stop you. If you want to make a claim—moreover, entirely unsupported ones (other than immeasurable and non noncontrolled anecdotes)—that extends to others—expect pushback. It’s kinda that simple for me.
[удалено]
Does anyone know why this got removed? Was going to reply to this thread but saw it got removed. Honestly had some great points worth discussing. u/rfugger
I'm the person who wrote the line that misled you, and I think it's only fair that I respond to your concern. There are many treatments for CFS, and almost all of them work for a small number of people. There are people who recover with diet changes, with various combinations of potions and pills, with exercise and without exercise, and with things like the lightning process, which helped you. None of these things work for most people who try them; it is true that none are reliably effective. This does not mean that none will work for you. I'm sorry you wasted time, and I wish you had found what you needed sooner. The question of whether to ban or allow recovery stories is a genuinely complicated one, and I can see a good argument on all sides.
Just to clarify: I did not use the lightning process. It has elements that I believe are directionally correct, but it is not a good solution in its current form. I completely understand why some people are left worse off because of it and I explained in detail why I believe that's the case in the linked comment at the bottom of the post (https://www.reddit.com/r/cfs/comments/x2hfj7/comment/imjo2r2/?utm\_source=share&utm\_medium=web2x&context=3). And I think you inadvertently pointed out precisely why no one has formulated an effective treatment strategy: the methods used are at best scattershot. The reason for this, in my view, is that this disorder is for most people the result of a destabilized nervous system. There are in theory many possible pathways to get out of it because, at a very base level, the goal is to reset the nervous system back to a working state. Sometimes the tactics can even be very simple. For example, Ron Davis reported in a recent interview that one of his graduate students was bedbound with CFS and hypothesized that she would recover if she avoided crashing. She did so and was better after a year. I plan to write a lot more on the subject and in great detail. I'm still getting better and more of my vitality is returning with each passing day. I believe I see a way to frame CFS that will make sense to more people and help them design a way out for themselves. I fully intend to see that through since I'm confident this might help at least one other person here. Thank you for apologizing.
There's any number of reasons why it's hard to find a satisfactory answer. The first is that we may not be a heterogeneous group; there might be half a dozen different diseases that all happen to cause similar symptoms. The second is that it is hard to do a meaningful evaluation of a potential treatment, so we rely on anecdotal evidence instead. Anecdotal evidence can be great, but it is often misleading; it is the nature of anecdotes that the most unusual claims will get repeated the loudest, and the critical details are often left behind. Anecdotes usually involve small numbers of individuals, not statistically-significant groups, and there is no control group, no objective criteria, none of the things that we know to be so terribly important in making good evaluations of this kind. Third, we do not have an animal model, or even an objective test to measure the presence or absence of CFS on a human subject. We do know that many CFS people tend to score one way or another of various tests, but we are not the only people who score this way, and nobody can reliably pick us out of a crowd using blood work alone. Finally, some of us just get spontaneously get better, and whatever we happened to be trying at the time usually gets the credit. We are not stable, and without a stable baseline, finding meaningful patterns can become impossible. There are a lot of very different ideas about what might be behind this, and how to fix it. Each idea is backed by people who really believe in it, too. And in the end, there is not one person here on earth - not yet, anyway - who can truthfully say, yes, this treatment is likely to help you, and likely to help the next person who comes in the door.
All of that is true and very well written. But there is one profound flaw in your assessment: what if the treatment strategy requires sustained commitment to a process for some time in order to treat the issue at the neurological level and that process and its outcome are (1) inherently non-deterministic yet (2) additive, so that the likelihood of recovery approaches 100% as you stack up tactics and sustain your approach for some time, because what you're really attempting to do is recalibrate a destabilized nervous system? Then recovery likelihood might roughly be modeled by an exponential distribution. Incidentally, this was **precisely** my experience. In fact, I even had a few false starts and ruts before I found a process that worked well for me and that I could remain committed to in spite of deficits in mood, willpower, discipline, etc. Do you at least see how the way you're conceptualizing CFS might be catastrophic insofar as it could deter people from prosecuting what may be an effective strategy? People with CFS are already so disabled that it's easy to fall prey to escape hatches like "this might not work for you" or "you have a different kind of CFS". I fell prey to that myself. It was the path of least resistance. But it's clear to me now in hindsight that this was a key barrier that needed to be overcome because (and this is really the crux of it): **it is impossible to know if a nervous system explanation is correct or such an approach will work for you unless you're able to stay committed to that for an extended period of time and test it**. This is a trap. It's also why the philosophy you're espousing, while perfectly reasonable, is going to harm many many more people, the same way it harmed me.