posted
I copied this from another site, removing the last name. Thought some might find it interesting...
Hi, all.
I posted the following to another ME/CFS group, and think it might be of interest to some people here, too.
I have researched ME/CFS essentially full-time for the past 15 years and have been a member of this group and others for a long time. I have learned a great deal from people here, as well as people in other ME/CFS groups on line, and from the more formal sources, including the published research literature, conferences, and personal interactions with clinicians and other researchers.
There have been few too many reports of total recovery from this disorder.
Both the causes and the individual aspects of this disorder are heterogeneous.
Here are my current views on cause and treatment, based on experience up to now, for what they are worth.
First, I continue to believe that there is a core mechanism in the pathophysiology of ME/CFS, involving a vicious circle in the basic biochemistry of the cells and the body as a whole, and that this vicious circle is what makes ME/CFS a chronic illness. Based on evidence that I believe is solid, this vicious circle involves the following features: depletion of glutathione, a functional deficiency in vitamin B12 that is caused by lack of protection of B12 because of the glutathione depletion, a partial block of the enzyme methionine synthase in the methylation cycle that is caused by the functional B12 deficiency, draining of folate from the cells via the "methyl trap" mechanism, caused by the partial block of methionine synthase, and continuing depletion of glutathione, caused by the dysfunction of the sulfur metabolism, which is also caused by the partial block of methionine synthase, thus completing and maintaining a vicious circle.
In my view, the other common features of ME/CFS stem from this core vicious circle process.
When I first came to this view in early 2007, I hoped that breaking up this vicious circle would bring complete recovery from ME/CFS for everyone who suffers from it. However, while there have been a small number of what are reported to be complete recoveries from treatment directed at lifting the partial block in the methylation cycle, most who have tried it have reported significant improvement, but not total recovery. Those who have reported complete recovery have also reported that they did several other types of treatment before or after the methylation treatment.
So my current view is as follows:
This vicious circle is in fact the central mechanism in the pathophysiology of ME/CFS. However, there are several different factors that can contribute to bringing it on initially in individual cases, and there can also be several issues that develop subsequently in a longstanding case of ME/CFS as a result of the dysfunction of the immune system and the detoxication system that result from this central mechanism.
While ridding a person of this vicious circle mechanism will allow their body to correct many of the abnormalities present in ME/CFS, some of these prior or subsequently developing issues cannot be corrected by the body itself, even after the core mechanism has been eliminated, and they must also be treated specifically. The reason is that the immune system and the detoxication system are normally "housekeeping" systems, designed to cope with pathogens and toxins as they are presented to the body in the normal course of living. If these systems become dysfunctional, as occurs in ME/CFS, it is possible for pathogens to become entrenched, and for toxins to build up to high levels, and they can thus present larger challenges than these housekeeping systems are capable of coping with.
Among these problems that are present in various cases are serious dysbiosis and dysfunction of the digestive system, toxic mold and other biotoxin illnesses, Lyme disease and its coinfections, high body burdens of toxic heavy metals, viral infections, and possibly retroviral infections. There may be others, but these are the ones for which I believe there is evidence. When these are present, they must be specifically treated, along with treatment of the partial methylation cycle block, and thus the vicious circle.
That's where it currently stands, in my opinion.
Best regards,
Rich
[ 05-01-2011, 10:07 PM: Message edited by: dogmom2 ]
Posts: 857 | From northern california | Registered: Dec 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Here are some other thoughts on what might be involved in a subset of patients with CFS:
posted
I don't think Rich is right about this. And I think the idea that "most" have had significant improvement is a bit overly optimistic. I've watched many groups where this therapy has been implemented, both Amy Y's more complicated protocol and Rich's simpler one, and have not seen too many success stories of any significance. I think that this disorder is likely part of the problem, but doubt that it is the central mechanism.
But,then again, who knows ...
Posts: 845 | From Eastern USA | Registered: Jul 2006
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