Stuart
Senior Member
- Messages
- 154
I have seen little until the recent "Recovery....and Reaction" blog by Cort on the internal debate on the mystery malady or maladies known as ME, CFS, CFIDS, PVFS, etc.
It is bad enough to fight the medical establishment for legitimacy, but to also have internal dissent on who has what is disconcerting. I am always troubled by anyone who thinks that they "Understand IT" or have "Solved IT" as if there is some simple answer.
In various sites and listservs I have found a group of "purists" who are convinced there is ME that is homogenous and caused by X, and anything else, probably some misdiagnosed symptoms caused by Y disease, but definitely not ME. Whether you can say it is one disease with multiple subtypes or similar diseases with multiple etiologies, no one can say yet. It seems heterogeneous, with multiple etiologies, multiple symptoms, and differing degrees of severity. It may be gradual or sudden onset, or it may be remitting and relapsing.
The more science and population studies that can be done on patients the more we can know, unfortunately the NIH and CDC aren't helping, in fact the opposite. Only WPI seems prepared to look at one subset.
On the specific cases of recovery, I have been skeptic myself of those "lightning method" claims, largely "walk your blues away" and CBT/GET cures. If one uses the "Empirical Definition" proposed by by CDC and Dr. Reeves, you will get a group of patients with some type of depressive disorder with fatigue that wonder of wonders Do get better with exercise and therapy!
On Mike's recovery story - the jury is still out; in fact he has gone from a severe medical crisis to regaining much, but not all, of his health. Very promising. I myself while under multiple similar therapies was doing better, but when I could no longer afford it my health has declined.
It is unclear if some of the systemic injuries and changes can be reversed, clearing the pathogens, detoxification, and restoring normal functions will likely take multiple therapies working in concert, and not everyone will respond the same way.
I am convinced that some of what is discussed in Mike's case is useful as part of overall protocol set. If a battery of tests to find what pathogens and system dysfunctions are in a patient and a prospective group of protocols can be tested against them, then what is needed are trial group of patients to treat and the money to do the treatment.
The problem is no one is likely to fund such a study, the likely heterogenic nature of the problem means that the problem has to be solved for many variables and unknowns, not a problem easily to approach by the defect is in A and the solution is in B. In fact both the CDC, medical professionals, and ME purists seem to be victims of the same reductive fallacy.
It is bad enough to fight the medical establishment for legitimacy, but to also have internal dissent on who has what is disconcerting. I am always troubled by anyone who thinks that they "Understand IT" or have "Solved IT" as if there is some simple answer.
In various sites and listservs I have found a group of "purists" who are convinced there is ME that is homogenous and caused by X, and anything else, probably some misdiagnosed symptoms caused by Y disease, but definitely not ME. Whether you can say it is one disease with multiple subtypes or similar diseases with multiple etiologies, no one can say yet. It seems heterogeneous, with multiple etiologies, multiple symptoms, and differing degrees of severity. It may be gradual or sudden onset, or it may be remitting and relapsing.
The more science and population studies that can be done on patients the more we can know, unfortunately the NIH and CDC aren't helping, in fact the opposite. Only WPI seems prepared to look at one subset.
On the specific cases of recovery, I have been skeptic myself of those "lightning method" claims, largely "walk your blues away" and CBT/GET cures. If one uses the "Empirical Definition" proposed by by CDC and Dr. Reeves, you will get a group of patients with some type of depressive disorder with fatigue that wonder of wonders Do get better with exercise and therapy!
On Mike's recovery story - the jury is still out; in fact he has gone from a severe medical crisis to regaining much, but not all, of his health. Very promising. I myself while under multiple similar therapies was doing better, but when I could no longer afford it my health has declined.
It is unclear if some of the systemic injuries and changes can be reversed, clearing the pathogens, detoxification, and restoring normal functions will likely take multiple therapies working in concert, and not everyone will respond the same way.
I am convinced that some of what is discussed in Mike's case is useful as part of overall protocol set. If a battery of tests to find what pathogens and system dysfunctions are in a patient and a prospective group of protocols can be tested against them, then what is needed are trial group of patients to treat and the money to do the treatment.
The problem is no one is likely to fund such a study, the likely heterogenic nature of the problem means that the problem has to be solved for many variables and unknowns, not a problem easily to approach by the defect is in A and the solution is in B. In fact both the CDC, medical professionals, and ME purists seem to be victims of the same reductive fallacy.
