Freddd
Senior Member
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- Salt Lake City
I claim that I have intentionally and purposefully cured myself for FMS/CFS (American diagnoses) and quite coincidently Congestive Heart Failure of the particular variant I had. I also had a whole lot of other miscellaneous diagnoses abstracted from the same 200 symptoms that also are generally gone. I also have co-morbidities that are still present. I also maintain that others can do the same for themselves.
“and you don't have the cure for it.”
Clearly some do not agree with me. So I think it would be quite productive to start out by defining what a “cure” for FMS, CFS and/or ME would look like, from a naked eye viewpoint. I invite @Valentijn and any other interested parties to contribute ideas, definitions and so forth. To be able to talk about a cure we need to know what it means.
Most of us here have or had symptoms that are other than are contained within the definitions of FMS/CFS/ME or that usually occur with them. I was broken in half sideways in a car wreck. That has left me damaged, and that hasn’t changed. I have Sub Acute Combined Degeneration and that is not included in the FMS/CFS/ME definitions. I had some virus along with my wife and many others locally that turned out to lead directly into CFS. It took my wife 3 months to recover. It was a terrible Christmas that year with 3 kids and both of us barely able to get out of bed. However, as the virus lifted, my symptoms “clarified” in the CFS/FMS pains and fatigue and so on. I had had early FMS symptoms since 3 years after the crash. Then 15 years later my body crashed totally. I and others from that period were treated terribly while it was “yuppie flu” and “an imaginary woman’s disease” and “It’s All In Your Head.” I got kicked out of practices for insisting that something physiological was REALLY WRONG. I had already located that my symptoms were from lack of MeCbl and AdoCbl. I can read and I did. It didn’t do any good. I did a 2 year 100 pill/day desiccated liver trial. The ”lights came on” (neurological brightening, depression lifted) 3 times in that period and got dumped out every time I got sick. It just wasn’t quite enough active b12 and actiove folate.
Year by year the symptoms increased and worsened, I have a lifetime symptoms history. Finally in the late 90s I started getting FMS/CFS diagnoses, once it became acceptable enough to say it out loud. Even then my pain docs made it clear that they were NOT treating FMS/CFS but rather the documentable injuries from the car wreck. There were millions of us with this mystery disease and they were hanging us out to dry. We were write-offs, not to be taken seriously. I had all the symptoms in spades, and congestive heart failure to boot and lots of other things. You can almost diagnose FMS/CFS patients by the names we were called and how badly treated we were. Only chronic pain patients were abused as much or more. And I was that too.
Part of the problem is that it isn’t a nice definitive disease like cancer or pneumonia. It’s a messy “syndrome”, a collection of symptoms and signs. When and how does it start and when and how does it end? Does it start with the first symptoms or not until one has built up all the required symptoms, perhaps 15-30 years after that first symptom? I had essentially all of them and then some, as well as some obvious co-morbidities. To me, it seems obvious that if the symptoms are gone and the medications being taken for the symptoms, discontinued, that a person has recovered. If their former physical capacities are more or less regained (age adjusted) and rehabilitated and able to go back to work and live a normal life, which can’t be mistaken for a CFS/FMS life, that one has been cured and some of the damage healed even. I’m not basing it on lab tests that show some biological indicator or other. Those tests never said I was sick which is part of the problem with FMS/CFS, no definitive tests.
So the question is, if a person no longer has the symptoms defining a syndrome and no longer is taking medications for those symptoms and has been rehabilitated and can do all sorts of things a person with CFS/FMS literally can’t do, isn’t that the very example of a “recovery” and if it is done purposefully and intentionally and planned, it is then a “cure”? That doesn’t mean that a person’s genetically based nutritional needs are changed. I don’t mean that cure and recovery have to be different things, I’m just recognizing that some might make the distinction.
In this definition I am not including co-morbidities. If a person has Lyme disease, while that might have been what pushed the person over the edge 15 years ago, if it is still present causing problems, then it is still its own problem and needs to be dealt with.
So how do you define a “cure” or “recovery” or “healing” from CFS/FMS, if there are any differences. Do all the symptoms have to disappear 100% or just gone enough to not meet diagnostic criteria? Since so many of the symptoms are non-specific it is quite possible to have the same symptoms from other causes. Or do they just have to be gone enough that the medications are no longer helpful or needed and they are not a hindrance to living a normal life.
I recognize a vast difference in not being able to walk 100 feet easily and being able to walk 5 miles a day, of being in terrible grinding fatigue 24/7 or having normal energy. The difference between the muscle pains of FMS and normal muscles is easily recognized. So from inside the body, being sick is a very different experience from being well. If you woke up one morning and were no longer ill with FMS/CFS would you recognize it? I did. My doctors and everybody in the office could see the difference 3 weeks after turnaround. My ex-wife didn’t even recognize me after not seeing me for 9 months. Everybody could see I was getting well. When is the line crossed to no longer having CFS/FMS?
B12 doesn't heal ME/CFS, regardless of exactly following your personal protocol or any other one. ME/CFS is much much more than a methylation problem, and you don't have the cure for it.
“and you don't have the cure for it.”
Clearly some do not agree with me. So I think it would be quite productive to start out by defining what a “cure” for FMS, CFS and/or ME would look like, from a naked eye viewpoint. I invite @Valentijn and any other interested parties to contribute ideas, definitions and so forth. To be able to talk about a cure we need to know what it means.
Most of us here have or had symptoms that are other than are contained within the definitions of FMS/CFS/ME or that usually occur with them. I was broken in half sideways in a car wreck. That has left me damaged, and that hasn’t changed. I have Sub Acute Combined Degeneration and that is not included in the FMS/CFS/ME definitions. I had some virus along with my wife and many others locally that turned out to lead directly into CFS. It took my wife 3 months to recover. It was a terrible Christmas that year with 3 kids and both of us barely able to get out of bed. However, as the virus lifted, my symptoms “clarified” in the CFS/FMS pains and fatigue and so on. I had had early FMS symptoms since 3 years after the crash. Then 15 years later my body crashed totally. I and others from that period were treated terribly while it was “yuppie flu” and “an imaginary woman’s disease” and “It’s All In Your Head.” I got kicked out of practices for insisting that something physiological was REALLY WRONG. I had already located that my symptoms were from lack of MeCbl and AdoCbl. I can read and I did. It didn’t do any good. I did a 2 year 100 pill/day desiccated liver trial. The ”lights came on” (neurological brightening, depression lifted) 3 times in that period and got dumped out every time I got sick. It just wasn’t quite enough active b12 and actiove folate.
Year by year the symptoms increased and worsened, I have a lifetime symptoms history. Finally in the late 90s I started getting FMS/CFS diagnoses, once it became acceptable enough to say it out loud. Even then my pain docs made it clear that they were NOT treating FMS/CFS but rather the documentable injuries from the car wreck. There were millions of us with this mystery disease and they were hanging us out to dry. We were write-offs, not to be taken seriously. I had all the symptoms in spades, and congestive heart failure to boot and lots of other things. You can almost diagnose FMS/CFS patients by the names we were called and how badly treated we were. Only chronic pain patients were abused as much or more. And I was that too.
Part of the problem is that it isn’t a nice definitive disease like cancer or pneumonia. It’s a messy “syndrome”, a collection of symptoms and signs. When and how does it start and when and how does it end? Does it start with the first symptoms or not until one has built up all the required symptoms, perhaps 15-30 years after that first symptom? I had essentially all of them and then some, as well as some obvious co-morbidities. To me, it seems obvious that if the symptoms are gone and the medications being taken for the symptoms, discontinued, that a person has recovered. If their former physical capacities are more or less regained (age adjusted) and rehabilitated and able to go back to work and live a normal life, which can’t be mistaken for a CFS/FMS life, that one has been cured and some of the damage healed even. I’m not basing it on lab tests that show some biological indicator or other. Those tests never said I was sick which is part of the problem with FMS/CFS, no definitive tests.
So the question is, if a person no longer has the symptoms defining a syndrome and no longer is taking medications for those symptoms and has been rehabilitated and can do all sorts of things a person with CFS/FMS literally can’t do, isn’t that the very example of a “recovery” and if it is done purposefully and intentionally and planned, it is then a “cure”? That doesn’t mean that a person’s genetically based nutritional needs are changed. I don’t mean that cure and recovery have to be different things, I’m just recognizing that some might make the distinction.
In this definition I am not including co-morbidities. If a person has Lyme disease, while that might have been what pushed the person over the edge 15 years ago, if it is still present causing problems, then it is still its own problem and needs to be dealt with.
So how do you define a “cure” or “recovery” or “healing” from CFS/FMS, if there are any differences. Do all the symptoms have to disappear 100% or just gone enough to not meet diagnostic criteria? Since so many of the symptoms are non-specific it is quite possible to have the same symptoms from other causes. Or do they just have to be gone enough that the medications are no longer helpful or needed and they are not a hindrance to living a normal life.
I recognize a vast difference in not being able to walk 100 feet easily and being able to walk 5 miles a day, of being in terrible grinding fatigue 24/7 or having normal energy. The difference between the muscle pains of FMS and normal muscles is easily recognized. So from inside the body, being sick is a very different experience from being well. If you woke up one morning and were no longer ill with FMS/CFS would you recognize it? I did. My doctors and everybody in the office could see the difference 3 weeks after turnaround. My ex-wife didn’t even recognize me after not seeing me for 9 months. Everybody could see I was getting well. When is the line crossed to no longer having CFS/FMS?