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Hypothesis Watch

richvank

Senior Member
Messages
2,732
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
 

Don Quichotte

Don Quichotte
Messages
97
Thanks Rich,

It is true that for ME/CFS there is currently no approved treatment and like you say only those who have the financial resources can receive some possible effective care. (sadly, this is the situation for many patients in general in most managed health care systems, but this is a totally different issue).

But, there are other diseases for which there are clear diagnostic criteria and relatively effective treatment.

Unfortunately, about 5% of patients for any given disease, will not have the classical clinical picture, and their objective/diagnostic tests may also be normal. Yet, they are very ill and if given proper treatment on time may fully recover from their illness.

Many of those patients are clustered under the non-diagnostic diagnosis of "medically unexplained symptoms".

In fact Wessley's first papers describes such patients, who were seen in a neurology clinic and no cause for their illness could be found.

This is one of the flaws of modern medicine which leaves out a significant number of patients that do not fit the paradigm of what their illness should be.

I think that CFS patients have two battles to win- one is to find the cause of their illness and more importantly effective treatment. The other is more universe-their illness and the way it was managed should serve as proof that a patient can be very ill, even if he/she does not fit any of the known "boxes" called disease.

As I said before, a diagnosis is an imperfect tool that enables physicians to stratify patients according to treatment and prognosis. If it is used in the way that you describe it turns medicine into a totalitarian regimen, in which patients are prosecuted for the sin of having an illness that doesn't fit their physician's paradigms.

Patients with CFS are just one example of many who paid the price for this approach. I believe that some of them have a known and treatable disease which has been missed because they did not fit the proper "box". I know of at least one patient whose "CFS" turned out to be a rare form of myasthenia-me.

I think you model is very interesting, and I have learned a lot from it.
I think you are right that the complexity of biological systems requires a more comprehensive view than the traditional biological reductionism. Although I think that the human mind can't really comprehend the complexity in time and space that occurs in one single cell in any given 24hrs, let alone the entire human body in a life-time. So, we may have a larger view, but it will still only be the edge of the ice-berg.
You also reminded me that I should consider B12 deficiency, even in patients with normal B12 serum levels. This is a highly treatable and unfortunately neglected condition.
But, I think that your model is not specific and such biochemical changes can be seen in many other diseases and conditions, as diverse as asthma and cancer.

I personally think that CFS is not one disease, and will turn out to be a combination of- rare presentations of known neurological diseases, unrecognized toxic exposures, autoimmune diseases for which the antibody has not yet been found, adult onset congenital diseases (such as mitochondrial myopathies), non-lethal slow-virus disease, relative nutritional deficiencies etc.

I think this is why some patients respond to rituximab, some to antivirals, some to nutritional interventions, some to detox protocols, some to a combined approach and some even to graded exercise training.

The bottom like is that they are all ill, they were all neglected and abused by the medical profession and modern society for many years, and they all deserve much better treatment and supportive care.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I think that CFS patients have two battles to win- one is to find the cause of their illness and more importantly effective treatment. The other is more universe-their illness and the way it was managed should serve as proof that a patient can be very ill, even if he/she does not fit any of the known "boxes" called disease.

Hi Don Quichotte, this tendency to checklist medicine streamlines the process but its based on a hypothetical "average" patient. In some medical decisions for public health, the standard is to intervene enough such that 95% of the population will benefit. This is for example the norm in setting nutritional guidelines. Evidence Based Medicine is a lot like this. The diagnostic processes used by some psychiatrists for CFS are almost entirely tick box diagnoses. Fill in these forms. One numbers says its another diagnosis. Another number says its psychiatric.

Bye, Alex
 

Don Quichotte

Don Quichotte
Messages
97
The diagnostic processes used by some psychiatrists for CFS are almost entirely tick box diagnoses. Fill in these forms. One numbers says its another diagnosis. Another number says its psychiatric.

Hi Alex, Regarding psychiatric diagnoses it is much worse than that.
In fact the more precise and accurate a certain field of practice is, the less likely you are to have patients with vague and ill-defined diagnostic entities. In hematology, for instance, you may have a patient with unexplained anemia, but such a patient will clearly have anemia and not MUS.
On the other side of the spectrum you have psychiatry in which there are no clear criteria to differentiate between normal and abnormal. Take for instance the diagnosis of depression. When does a normal emotional response like sadness and mourning turn into an illness requiring intervention and treatment? Or when does normal fear turn into anxiety? When is a certain behavior adaptive and when does it become maladaptive?
Much of the psychiatric abnormalities depend not on the individual but on the society he/she lives in.
Having difficulty sitting quietly in one place and looking for hours at a blackboard with signs or white paper with similar signs, is clearly a disadvantage in modern western society, but may be quite adventitious for someone living in the african Savanna. Homosexuality is a good example for a psychiatric diagnosis that disappeared with changes in the modern society.

Because the diseases are ill defined, the results of treatment are also as ill-defined. So, you have much more placebo effect and it becomes very hard to know what are the true effects of medications or interventions. The personality of the physician and the human interaction become much more important than the pharmacological effect many times.

Its not like having an abnormal level of hemoglobin, which has nothing to do with what society thinks about desirable hemoglobin levels. A patient with significant/ symptomatic anemia will have similar symptoms and signs if he lives in New-York or in the Savanna. And it will not be of any advantage here or there. A patient will have a similar response to a blood transfusion regardless of the relationships he/she has with their physician.

Leukemia will be leukemia where ever you are, and without proper treatment your outcome will be similar regardless of the society you live in. The definitions of response to treatment are very well defined to the molecular level.

Neurology is more similar to psychiatry than to hematology in that regard. This is probably the reason why 30-50% of their patients fall under MUS (either on itself or with a known neurological illness. you can have a stroke+MUS, MS+ MUS etc).

In fact, I think that psychiatry is a mixture of true neurological diseases (such as schizophrenia) and many non-diseases (such as normal sadness and mourning).

DQ