Is CFIDS a Complex Mind-Body Problem?
A new study (March 2005) has found that people who have chronic fatigue syndrome respond at a lower rate to placebos than patients with other diseases, including migrane headaches, ulcers, and reflux. The paper was published in the March-April issue of Psychosomatic Medicine. I find this quite interesting because it suggests that the mechanism that improves health through positive expectations is not working well for people with chronic fatigue. Some significant part of the mind-body healing mechanism is not working. While some would interpret this to mean that CFS involves a physiological mechanism that can not be influenced by thought, I turn the issue around and wonder why the mind-body healing mechanism does not help CFS at least as much as it helps other very difficult conditions. Even people with completely physiological problems with no 'mind' involvement, such as broken bones, can have better healing with mind-body therapies. So the fact that these therapies do not help people with CFS really is intreaguing.
One possible conclusion is that the type of placebo they used was not designed properly for CFS. There are practitioners using much more complicated mind-body treatments that do indeed appear to work for some people with CFS (PWC), such as Reverse Therapy. While other quite complicated mind-body treatments such as cognitive behavioral therapy (CBT), have mixed results. The only conclusion I believe we can safely draw is that CFS is in its own category of disease, and if mind-body treatments are to help at all, they must probably be carefully designed around the specific pathologies involved. Such as the common problem of a neurotoxin load from Borrelia infection (one study shows this to be present in 80% of CFS illnesses). Ordinary mind-body treatments for a complex condition like CFS are just inadequate.
Maybe a more complex mind-body treatment would work better, or at least could be a powerful adjunct. My own experience is that this is the case, and that most PWC are dealing with emotional and mind-body issues as well as the physical aspects of their illness. Some of these emotional and mind-body issues may have emerged from the strain of the co-infections, while others may have already been present and are being amplified by the illness. I was in denial of this for many years, and was amazed when I started looking deeper into the mirror. I was missing key emotional processing skills prior to my CFS, and had used my intellect alone to manage emotional crisis in the past. There was a lot more baggage than I realized. This did not probably CAUSE my CFS, I am convinced that the Borrelia (Lyme Disease) was the primary factor, but I believe it helped the Borrelia in some peculiar ways. Perhaps the Borrelia neurotoxins were more disruptive to me becasue of my pre-existing weakness in this area.
I would not discount the possibility that a strange neuroimmunological interaction is taking place between cognitive and physiological elements of this disease. For example, stress may be managed poorly (perhaps becasue of missing emotional skills as I just described in my own case, or perhaps in some cases because of genetic predispositions). A high stress event may then lower immunity even further, allowing pre-existing co-infections to take hold. Then co-infections produce neurotoxins that de-stabilize the hypothalamus. The mind-body begins to become 'mis-wired' and is feeding us symptoms that are out of proportion with the actual threats to our health. The pituitary and adrenals respond and the body becomes conditioned to over-response to any threat. Over time this wears down certain body functions, such as digestive, glucose management, adrenal, and detox systems. This weakening leads to even stronger feedback to the hypothalamus telling the mind-body that something is wrong, and every new symptom is like a jack hammer to the brain, to try and get us to 'fix what is wrong.'
My own search is for a combination mind and body treatment. I believe we have acquired a disease 'system' and must treat all aspects to get better. I spent a few years as a computer programmer early in my career, and remember how tough it was to find 'bugs' that involved both software and hardware problems. I believe that may be what we are dealing with and why neither the hardware-only (physiological) nor the software-only (mind) treatments are working for CFIDS. A unique combination may be required. This is consistent with a lot of holistic approaches, and some of them do seem to work, but few have been designed specifically for CFIDS/FM/Lyme, and none that I have found are up-to-date in both the mind and body arenas. So I am trying to incorporate a new combination, what we NOW know about both mind and body goes way beyond what was known when holistic treatments were first discovered. Maybe it is becoming feasible to successfully treat both the mind issues (which are amplified out of normal proportion by the neurotoxins in the Borrelia), and the body issues (the co-infections).
One possible conclusion is that the type of placebo they used was not designed properly for CFS. There are practitioners using much more complicated mind-body treatments that do indeed appear to work for some people with CFS (PWC), such as Reverse Therapy. While other quite complicated mind-body treatments such as cognitive behavioral therapy (CBT), have mixed results. The only conclusion I believe we can safely draw is that CFS is in its own category of disease, and if mind-body treatments are to help at all, they must probably be carefully designed around the specific pathologies involved. Such as the common problem of a neurotoxin load from Borrelia infection (one study shows this to be present in 80% of CFS illnesses). Ordinary mind-body treatments for a complex condition like CFS are just inadequate.
Maybe a more complex mind-body treatment would work better, or at least could be a powerful adjunct. My own experience is that this is the case, and that most PWC are dealing with emotional and mind-body issues as well as the physical aspects of their illness. Some of these emotional and mind-body issues may have emerged from the strain of the co-infections, while others may have already been present and are being amplified by the illness. I was in denial of this for many years, and was amazed when I started looking deeper into the mirror. I was missing key emotional processing skills prior to my CFS, and had used my intellect alone to manage emotional crisis in the past. There was a lot more baggage than I realized. This did not probably CAUSE my CFS, I am convinced that the Borrelia (Lyme Disease) was the primary factor, but I believe it helped the Borrelia in some peculiar ways. Perhaps the Borrelia neurotoxins were more disruptive to me becasue of my pre-existing weakness in this area.
I would not discount the possibility that a strange neuroimmunological interaction is taking place between cognitive and physiological elements of this disease. For example, stress may be managed poorly (perhaps becasue of missing emotional skills as I just described in my own case, or perhaps in some cases because of genetic predispositions). A high stress event may then lower immunity even further, allowing pre-existing co-infections to take hold. Then co-infections produce neurotoxins that de-stabilize the hypothalamus. The mind-body begins to become 'mis-wired' and is feeding us symptoms that are out of proportion with the actual threats to our health. The pituitary and adrenals respond and the body becomes conditioned to over-response to any threat. Over time this wears down certain body functions, such as digestive, glucose management, adrenal, and detox systems. This weakening leads to even stronger feedback to the hypothalamus telling the mind-body that something is wrong, and every new symptom is like a jack hammer to the brain, to try and get us to 'fix what is wrong.'
My own search is for a combination mind and body treatment. I believe we have acquired a disease 'system' and must treat all aspects to get better. I spent a few years as a computer programmer early in my career, and remember how tough it was to find 'bugs' that involved both software and hardware problems. I believe that may be what we are dealing with and why neither the hardware-only (physiological) nor the software-only (mind) treatments are working for CFIDS. A unique combination may be required. This is consistent with a lot of holistic approaches, and some of them do seem to work, but few have been designed specifically for CFIDS/FM/Lyme, and none that I have found are up-to-date in both the mind and body arenas. So I am trying to incorporate a new combination, what we NOW know about both mind and body goes way beyond what was known when holistic treatments were first discovered. Maybe it is becoming feasible to successfully treat both the mind issues (which are amplified out of normal proportion by the neurotoxins in the Borrelia), and the body issues (the co-infections).
posted by Kurt at 8:14 PM
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