Hi Rich,
***Hi, Don.
I am not sure I was able to make my point clear.
I think we do and do not talk the same language (which is good, because this way we can learn a new language).
***I agree. I'm learning a lot from you.
To understand your view better, what would be your answer-
Let's say you are a physician and a patient comes to you with all the "classical" symptoms of ME/CSF.
You then do all the tests-Gluthatione etc. and all come back completely normal.
What would be the diagnosis of this patient, according to your approach?
***I have to say that I have difficulty accepting your hypothetical premise, because so far, every case I've had the opportunity to study that has had "classical" ME/CFS symptoms and has had the methylation pathways panel run has come up positive for the vicious circle pathophysiology mechanism that I've proposed in the GD-MCB hypothesis. I'm not trying to be contrary or arrogant when I say this. This has actually been my experience. Once in a while someone comes into an ME/CFS internet group or sends me an email who doesn't actually have ME/CFS, and I think you can usually spot them if you do a good job of asking about their history and symptoms, if you have sufficient familiarity with the "real McCoy."
Now, let's say that you decide that you will still treat the patient according to your protocol, but the patient instead of improving does worse?
***I would not suggest using a methylation protocol on a patient who did not test positive for having a partial methylation cycle block. That's one of the reasons I suggest to people that it is best to run the panel before deciding to try the protocol. I believe in the dictum that physicians try to follow: "'Diagnose before you treat." I realize that not everyone runs the panel first, for a variety of reasons--cost, inability to go for a blood test, inability to find a physician who will order the test, being a resident of New York State, which requires its own certification of laboratories, etc., but I still think it's best.
***A more common situation, unfortunately, is that a person tests positive for the vicious circle mechanism, but then the methylation treatment doesn't help them. That's the problem area I am focusing on now. What are the etiologies and comorbidities that this person has that also need to be treated specifically? According to my view, they do have ME/CFS, but the challenge is treating the complexities that can be associated with it. Treating the pathophysiology of ME/CFS is usually not enough to produce full recovery, based on the experience we have had over the past five years.
What would you do now?
***If the patient did not test positive for the vicious circle mechanism, I think that what I would do then as a physician would depend on the setting in which I was practicing, and the type of practice I had. A physician has to be able to earn a living from his/her practice. If I were being paid by insurance or Medicare, or was in a managed-care pr HMO type of practice, and the patient didn't match up with the diagnostic criteria that I had memorized for some other disorder beside ME/CFS, I would have a problem, because in the few minutes I would be able to spend on the case while trying to carry on that type of practice, I would probably not be able to help the patient significantly. I would probably have to tell them I was sorry, and refer them to another physician. (I wouldn't refer them to a psychiatrist, though.) On the other hand, if I were a cash-and-carry physician, and the patient had the financial resources to cover a more detailed exploration of the case, with their agreement I could do some more fundamental testing and study, and hopefully figure out what the diagnosis really should be, and then hopefully treat accordingly.
***Unfortunately, this is the type of quandary in which many people who actually do have ME/CFS find themselves today. Even if they can get a diagnosis of ME/CFS, unless they have the financial resources to see a cash-and-carry ME/CFS specialist, it is very difficult for them to obtain effective care. Conventional physicians have been trained to treat with patented drugs, primarily, and those typically are not very helpful or are even deleterious to people with ME/CFS, because the body views drugs as toxins and works to eliminate them, but the detoxication system is not functioning properly in ME/CFS. One has only to look at the treatments ranked at the bottom on the CureTogether dot com site to see what the experience of the patients with many of the drugs has been: http://curetogether.com/chronic-fatigue-syndrome/treatments/
***Best regards,
***Rich