mind/body dichotomy
First let me say that I have no intention of trying to promote the Gupta programme specifically or similar approaches but that over a long period of time and study its basic premise resonates with my own personal experience of this illness.
Hi Marco,
I really appreciate this post. I too could say, "over a long period of time and study its basic premise resonates with my own personal experience of this illness" to a point. I would like to respond to a couple of comments you made in it.
What Gupta (and others) propose is that the (unconsious) brain structures that deal with perception of threat and the stress response - specifically the Amygdala - become chronically over aroused initiating and sustaining the stress response and producing the wide range of symptoms seen in ME. These symptoms are then subconsiously perceived by the amygdala as threatening and feedback into maintaining the hyperarousal state or in the terms of the Santiago theory - the symptoms become part of the threatening environment.
If all this sounds a little too 'psychological' what we are talking about is physical changes in brain structures through neural plasticity as chronic arousal of the amygdala and association of threat with the symptoms creates ans strengthens the neural connections creating a web of connections conditioned to stimulate the stress response. None of this process is conscious or involves 'beliefs'.
The other side is that feedback mechanisms exist between the conscious frontal areas of the brain and sub-cortical areas such as the amygdala. In normal circumstances the stress response is triggered in response to an external threat and conscious perception that that threat has gone has an inhibitary effect on the amygdala reducing the stress response. In ME the conditioned stress response has got caught in a maladaptive loop operating outside of consciousness therefore no amount of adaptive or maladaptive consious beliefs or 'talk therapy' will have any effect. However it may be possible that the web of neural connections can be extinguished by consious effort. . . .
As I said however, this resonates with me and I can see how such processes could interact with a chronic retroviral infection to produce the experienced ups and downs and frequent relapses.
I have been studying the nervous system response in illness for my MA thesis for (too many) years. However, due to my significant cognitive symptoms and profound fatigue, I'm having trouble recalling what I've read and even more difficulty connecting the dots. So rather than a technical response, this is my take on all this.
I think you have expressed very well what can be found in the literature coming out of many disciplines including psychology, neurobiology, medicine, and a new separate field of trauma studies. It is really an exciting time to be studying the brain and the confluence of these latest studies will prove to be very enlightening for all of us, hopefully one day soon. I think those of us who are ill can benefit greatly by this new brain science.
However . . .
I don't think you are trying to say that you think ME/CFS is ONLY a brain over-reacting to a threat that is no longer there. But some people ARE saying that. Some people ARE using this latest research to support the notion that ME/CFS is all maladaptive responses of the brain and can be fixed through the brain (I apologize for the oversimplification of this but it's the best I can do right now). Just one example of this is the book The Body Has a Mind of Its Own by Sandra Blakeslee. It is a fascinating, revelatory book. I was thoroughly enjoying reading it until I got to the chapter on CFS and FM (I can't find my copy of it at the moment so this is just from memory), which basically reduces these illnesses to our brains and their wiring.
This is unhelpful in my opinion as it may leave unaddressed a continuing "external threat" which may or may not turn out to be XMRV. Even though this is not "external" in a sense of outside our body, it is external in the sense that it may be continuing to ignite the "stress response," continuing to send out signals of danger because there is actually ongoing danger there! Until this ongoing threat is dealt with, I am wondering if only limited or temporary progress can be made with breaking the "feedback" loop.
I would love to hear that these approaches, which I think are profound in their own way, also include the possibility (and what I really think as probability), of not just an original trigger, but an ongoing agent that will continue to wreck havoc if not dealt with adequately. There is too much it's ALL "maladaptive responses" OR bacterial/viral/retroviral infection and not enough "lets get at this thing from all angles." So much so, that trying to use these approaches (and there continue to be more being offered every day), while believing that one may also have an active ongoing infectious trigger makes one feel defensive. At least it makes ME feel very defensive.
It makes me feel all scrinchy.
And then there is the other very real problem of where our research dollars are going, what kinds of treatments will be developed etc.
I value this new research, I really do. But if we treat the maladaptive responses without treating an ongoing trigger we may not have long term healing. At the same time, it is probably also true that if we treat the virus (or whatever it turns out to be) and do not work with the responses our brains have made, we may end up not totally well.
I want both.
I don't think I am necessarily disagreeing with anything you are saying, Marco. And I commend you on saying it so well. If you try the Gupta program, please report back. I would love to hear all about it.
And Marco, if I had a portion of your brain right now I could finish up my thesis and move on with my life. Just the time I've spent writing this post leaves me with the feeling that my brain has been sucked out of my head. And that is probably the most clarifying thing I have said so far.
I would love to continue this dialog with you.
Gracenote