Hi, Angela.
Thank you for your comments. I agree that it is very difficult to quantify what I call psychological/emotional stress that occurred prior to the onset of a case of CFS. It's actually also difficult to quantify other types of stress (physical, chemical or biological). I have taken a certain amount of flak from some people over the past few years for even suggesting that stress, and particularly psychological/emotional stress, is a factor in the etiology of CFS. However, I've received detailed histories from a lot of people who have CFS, and I've studied the published risk factor papers, and I'm convinced that various stressors do play important roles in causing onset of cases of CFS. I listen to the people who have this disorder, and I take what they tell me seriously. True, this is a collection of anecdotal reports, but it gets to be a rather large collection, and over time I think it's valid to draw impressions from the general features of these reports that appear over and over.
Can I apply some sort of rigorous statistical analysis to this? No. But is this type of information valid to the degree that one can confidently base hypotheses for etiology and pathogenesis on it? I believe it is, and I'm not sure there is another way to do it for a disorder like CFS. Stress is an inherently difficult thing to quantify and analyze, but it's very real.
The CFS population is very heterogeneous. For some people, psychological/emotional stress doesn't appear to have been a significant factor, and those people seem to be the ones who become the most incensed if this subject is raised. I think it is a human tendency to start one's thinking from one's own experience, and that is normally a good place to start. But if a person is not able to go beyond this and entertain the possibility that everyone's experience is not the same as their own, I think their ability to get a complete picture of what is going on will be limited.
For other people who have CFS, pychological/emotional stress appears to have been a very important contributor, and after this topic has come up on a CFS board, they often write to me in private emails to tell me that, because they don't want to be criticized on the CFS boards for reporting that emotional stress seems to have been important in bringing about onset of their illness. I can't blame them for that, and I have appreciated what people have shared with me over the past few years.
I understand the sensitivity of this issue. People with CFS have been and are too often accused of being psychiatric cases. I certainly do believe that CFS is an organic, physiological disorder, not a psychiatric condition at its basis. But the fact is that the brain and the body are intimately linked, and the nonspecific stress response system responds to all types of stress, whether physiological or emotional, by producing the same hormones and neurotransmitters: cortisol, epinephrine, and norepinephrine. And when this occurs excessively and over long time periods, it results in oxidative stress and depletion of glutathione. That goes on to produce significant biochemical changes, and the resulting illness is very physiological, regardless of what types of stressors originally brought it on. And having this illness certainly can affect a person's state of mind, such as by producing depression as a result of the loss that has occurred and the difficulty in maintaining hope that there will be a positive change. I think this is very understandable. But to conclude that depression is the root issue is just wrong.
Best regards,
Rich
thanks for your answer Rich.
I'm writing a little on the hop so hope this doesn't come out garbled. I also hope that my criticisms here are understood not as personal attacks on anybody, but only as a constructive (if negative sounding) discussion about the problems of 'stress' explanations. They certainly are not complete in their format here.
I think one major problem around 'mind-body' issues is the lack of clarity in the language of people claiming psychogenic causation for an illness like 'CFS', which stress explanations often utilise.
So, for example, 'Brain', which is after all part of the 'body', becomes incorrectly synonymous with 'mind' (an abstract term). Then metaphysical constructs (beliefs, lies, delusions) are proposed as causing organic illnesses to absurdly increasing degrees, where they are not just euphemisms for 'hypochondria' or 'malingering'.
Another problem is the belief that, because somatic (bodily states) MIGHT affect one's 'state of mind' (whatever that means- and this would necessarily be a complex and sometimes unstable construct), people assume vice versa is also the case, per se, which is a fallacy in reasoning.
These are only some problems, in addition to the ubiquity of 'stress', which make the 'psycho-social stress causes CFS' claim very unsafe as an assumption.
So we have to be very clear what we are talking about. Scientists at the very least should be writing more tentatively, ESPECIALLY in light of the heterogeneity of what gets called 'CFS'. But even you didn't do this in your presentation. You generalised.
Also ATTRIBUTING one's illness to stress does not mean it is correct, period. We do have a special problem in that psychotherapeutic discourse, which pervades much of Western discourse, is often taken up uncritically, even by patients. True, those of us who believe ourselves (or in my case, loved ones) illness was NOT caused by psycho-social 'stress' might be accused of an uncritical take-up of 'biomedical' discourse, but as a natural scientist, I would hope you weren't assuming that this is the case with people who have trouble with the 'mind-body-stress' claims. It is too easy to blame those of us who do as somehow over-generalising our own experience, but the matter doesn't go away - stress is a ubiquitous human and other animal experience, and therefore impossible, certainly at this time, to elucidate as a causation of an illness like Canadian defined ME/CFS, for example, or, for that matter, cancer.
And to return to my little joke about star signs, I was actually making a serious point. If people wrote to you and attributed their illness to their star sign, or to something they did in a former life (bad karma), you might be more sceptical than if they tell you they were 'stressed'. Despite the enormous problems in psycho-social 'stress' explanations for illnesses such as Canadian defined ME/CFS, there is still an almost quasi-religious attachment to the concept, to the point researchers write with certainty and authority on these issues where there should be none. Unpicking the tangle of problematic assumptions about 'stress' in 'CFS' is important, nevertheless, even if it is discomfiting for patients and researchers alike.