***Thanks for posting these abstracts. I think that these papers are some of the more interesting studies that have been done in ME/CFS, and I think that they do provide some clues as to what is going on, but they are all looking at downstream effects in the pathophysiology. Until people start asking about earlier events in the cause and effect tree, they will continue to be describing effects rather than causes, and the treatments that result will not be getting at the root of this disorder.
***Sorry for the rant, but I presented this hypothesis to the research community at the IACFS/ME conference over four years ago, and unfortunately, they continue to quibble over whether it is psychological or neurological or immunological or endocrinological, or rheumatological, or infectious, or toxicological, or mitochondrial, or genomic or gastroenterological, or allergic, or ?, and the fact (in my opinion) is that it affects all these specialties, but its origin is not in any of them.
***If you've read this far, thank you for your indulgence!
-)
***Best regards,
***Rich
A few thoughts.
1. I think there's way too much discussion in this illness about "the cause."
The problem is that this causes people to get stuck on this topic, as if fixing the cause directly is the only way to treat the illness.
A lot of times in life, figuring out what "the cause" is will not solve our problems. For instance, to my understanding, part of "the cause" of the economy becoming more problematic is the aging of the large number of people in the Baby Boomer cohort. Short of taking millions of people out and executing them, that's not a problem we can "fix. It's something that we now have to accept as a given and to work around.
Maybe that's the case in this illness. Maybe things have changed now in ways that can't be fixed. Certainly the world is more toxic than it used to be. Maybe there's a new virus in the population. (Actually, the latter is certainly true -- there are _constantly_ new viruses in the population.)
These are things that we should know about, and that should be studied in the hope of figuring out some sort of solution. But to think that the solution will involve addressing those things directly may be a bit too simplistic.
2. If you want to figure out root causes, look to what's changed.
Figuring out root causes won't necessarily mean the root causes are the answer. But at least it's a good start in terms of understanding what's going on.
ME/CFS is a new disease. Yes, some people say it used to be present. But it's hard to make a case that it was present to this extent.
I see two theories here for what has changed: 1) The world has become more toxic. 2) XMRV has emerged and has spread through the population (through contagion or vaccine or ticks or whatever).
It very well be that the collapse of the glutathione system is at the root of the disease, and that it acts as an intermediary for many or most or all of the symptoms. Perhaps if we could fix that system, everything would be fine.
But there is a reason that the glutathione system collapsed. And it can't possibly be because of previous stressors (like "stress"), or this disease would have emerged in the past.
I've argued (citing literature) that biotoxins put stress on the methylation system. Other people have argued that viruses of various types put stress on it. Maybe there are other things that do it.
It would be good to know "what changed," in the hope of altering it to the extent that we can. We can't eliminate all our toxic exposures, but perhaps we can reduce them. Maybe there are ways that we can address viruses as well.
But perhaps, as Rich suggests, we can address the methylation system directly. I don't think that the methylation system can be the cause for why we're sick, if we're looking at what changed. But it very well may be the mechanism (or a large part of the mechanism) for why we are sick.
And perhaps fixing it would make us not sick. Perhaps fixing it would allow us to be able to compensate for the toxic exposures that we receive, or to get all the new viruses we encounter under control.
I like the word "mechanism" here though. Once you start using the word "cause" or "origin," people start to get annoyed. And I think that's not unreasonable, with a new disease, if there's been no change in what's being posited.
The question is, can you identify the mechanisms that actually are doing something. Based on what I know, I do believe that the methylation problems have lots and lots of downstream effects. Depression or lack of exercise....not so much.
In all of the literature in the history of exercise or mental health, there's nothing to suggest that those problems result in a) ME/CFS or b) the underlying problems in ME/CFS (such as methylation shutdown, heart disease, viral proliferation, etc. etc.). There have been lots and lots of people who have been stressed, depressed or out of shape in the history of the world, and there is nothing to make us think that being those things results in this disease. Thus, the idea that fixing those things will fix the disease makes no sense either.
Are there lots of people in the world whose glutathone systems have collapsed, in the past? Does this always result in ME/CFS? It does seem like people who take that Vitamin Diagnostics (or Health Diagnostics or whatever that lab is called now) do really poorly on that test, if they have ME/CFS. Are there people who do poorly on it who don't have the disease? I cant believe I've never asked this question before, because it's kind of fundamental.
Whoops, I'd better go. I have a lot more thoughts though. Maybe I'll come back to this.
Best, Lisa
