M.E./CFS, An Alternative View
Jock Millenson (1991)
The deputy director of the British Institute for Complementary Medicine has recently proffered some comments on how complementary (alternative) medicine might be of help to CFS/M.E. sufferers. After setting out the traditional naturopathic and energetic philosophies of natural medicine, Michael Endacott then goes on to derive some therapeutic suggestions from a holistic model based on the principles that an illness (a) is originally induced by prolonged stress; and (b) represents a form of energy imbalance or disharmony.
Since allopathic (orthodox) medicine has so far come up with very little in the way of effective treatment, CFS/M.E. sufferers everywhere will be interested in what complementary medicine might have to offer. Unfortunately the suggestions made, which are likely to be representative of the view of many complementary medicine practitioners, seem to me—speaking as a psychologist, medical herbalist, and CFS/M.E. sufferer—to be seriously misguided. The disparity between theory and effective treatment is so starkly revealed in the context of Endacott's advice to sufferers of CFS/M.E. that it may pay us to look more closely at the conceptual model of complementary medicine. Perhaps by showing precisely where it misses the mark, we shall find ourselves in a better position to apply the framework of natural medicine to CFS/M.E. in practical ways that better fit the special character of this disease.
Complementary medicine holds that because much illness is directly stress–induced, the various alternate therapies which aim at restoring the individual as a body-mind-spirit whole to balance can often be extremely valuable in the recovery from chronic illness. This view is no longer as controversial as it once was, for even the orthodox medical establishment has, in recent years, come increasingly to view disease from the perspective of a biopsychosocial causal model. Nonetheless it is a considerable extrapolation from that holistic view to Endacott's much stronger conclusion that because stress is a crucial factor in all disease, the key to healing in CFS/M.E. is resolving to change your health condition by making the decision to succeed.
Actually, the intention to get well (which I take to mean positive feelings of determination and optimism), as many of us know from personal experience, is not something always under our control in CFS/M.E. This is only one of the occasions where, by failing to take into account one or more of the very special features of CFS/M.E., casual application of the complementary model can lead to conclusions which are so misleading that if they were taken seriously by either patient or practitioner could hinder rather than promote recovery.
Another uncritical generalisation links energy medicine with the lack of energy that characterises CFS/M.E. sufferers. Acupuncture, homeopathy, osteopathy, botanic medicine, and optimal nutrition are all treatment systems that have been associated in one way or another with energy stimulation. And since the cardinal symptom of CFS/M.E., asthenia, can be characterised as "switched off" energy, a linkage can be made that gives the subtle implication that any of these therapies, given "time, patience, and cooperation" will inevitably re-energise the CFS/M.E. sufferer. Actually, this putative linkage gives a false sense of hope, for at present (and much as I an alternative practitioner would wish it), there exists as yet no systematic compelling evidence that any of these (or any other) therapies are guaranteed to promote recovery from CFS/M.E. Moreover, as recent experts have emphasised, CFS/M.E. is a multisystem disease. Chronic fatigue may well be one of its most salient symptoms, but in fact in the majority of cases this illness pervades virtually every body system.
Of course, individual cases have benefited from a variety of therapies, alternate and orthodox. We know from the pages of the various support-group publications from all over the world that many treatments have helped some people, some of the time. But because CFS/M.E. can present concurrently or be confused with many other disorders, and because many (and I am one) sufferers have found none of them effective, the role of these therapies in affecting CFS/M.E. remains inconclusive. Indeed if there were any generally effective treatment (complementary or orthodox) for CFS/M.E., we should all have certainly flocked to it and be looking back. I speak as one who has been to the extreme depths of this illness and who tried virtually every alternative therapy extant with absolutely no detectable effect.
It is thus one thing for us to say that improving diet, reducing stress, and learning to relax all work to strengthen the immune system, and something quite different to presume that they therefore must promote recovery from CFS/M.E. This kind of logical error opens the way for an easy discreditation of alternative treatments; for by implying that certain treatments are effective but may take a very long time, we invite exactly the criticism made by the medical establishment: i.e., that alternative practitioners are exploiting sufferers who are desperate to try anything.
There is growing evidence that CFS/M.E. falls into a very special class of diseases. This class challenges the universality of some of the basic principles of holistic medicine. One of those principles holds that since virtually all illness is due to imbalance, once you succeed—by your own efforts, aided by natural treatments—in restoring your mind and body to a harmonious balance, the illness which was a sign of that imbalance must eventually disappear. There is no doubt in my mind that while many illnesses do fit this model well, CFS/M.E. does not. It, along with a number of other enteroviral and retroviral diseases, are emerging as clear scientific anomalies. If CFS/M.E. does not fit this prevailing naturopathic framework, we can either force it into the mold by ignoring the disparities (as those who are not intimately familiar with CFS/M.E. all too often do); or alternatively, we shall have to develop another model.
I am convinced as a sufferer and practitioner that adopting a positive attitude is not something necessarily under the control of an CFS/M.E. sufferer during certain stages of this illness. The viral depression, gloom and doom, feelings of utter weakness, physical and psychic, are as much a part of the CFS/M.E. symptomatology, as are the disturbances in temperature regulation, the sleep disruptions, the palpitations, the hyperventilation, the sensitivity to noise, the loss of concentration and short-term associative memory, the muscle pains and tremors, the digestive disturbances, all the weird and bizarre symptoms that are by now, thanks to the CFS/M.E. support organisations and a few dedicated practitioners, so well documented.
If this is so, then holistic medicine's philosophy of self-responsibility for health must go beyond simply recommending that CFS/M.E. sufferers begin to think positively and select an appropriate natural (energising) therapy. Aside from the lack of empirical evidence to support such an approach, it subtly associates complementary medicine with those who argue that CFS/M.E. is "all in the mind."
In the remainder of this article I wish to propose an alternative alternative view which I think better fits with the facts of CFS/M.E., and which does give, if not a promise of cure, some hope of how to cope optimally with the illness. Moreover, it has important implications for the largely neglected question of prevention.
The best working model we have of CFS/M.E. to date is what I call "the broken leg hypothesis". When you break a leg, the best treatment is to get it set properly, perhaps have it put in a cast, get a few dozen good books, get set for a good long rest, and wait. Since we've been breaking and setting our bones for a good many thousands of years, we know how to deal with the "symptoms", we accept the sentence, and generally speaking, if we are careful, in a few weeks we are out and able to resume life where we left off. Hopefully we'll be more careful afterwards.
It may well be true in fact that there were psychological factors in our breaking a leg. Perhaps we were showing off, skiing on a slope beyond our ability, or some recent time pressure stresses had led us to crossing streets carelessly, or we slipped on the ice wearing trendy shoes that no sensible person would wear, or perhaps, most direct of all, we desperately needed a rest and this was the only way we dared (unconsciously, of course) to get it. Long ago Dunbar was surprised to discover that even fracture cases do have a recognisable psychological pattern; so you may be quite sure that every other illness has its particular psychic elements too.
Moreover, to continue the analogy, it may also be true that the leg's healing process can be speeded up by comfrey tea, by homeopathic symphytum, by improving our diet, practicing meditation during our wait, having some relaxing aromatherapy massage, and any of a host of other alternative treatments. Note too that we may very well experience various secondary emotional disturbances as a result of our primary problem: we might become anxious that the time away from work is affecting our job security, despondent (dare I say "depressed") that we have to lie in the house inactive for weeks while "out there" our friends are active and getting on with life, concerned about an intimate relationship that needs our active energy which we can't give, so frustrated that we are quick to anger with our carers, and so forth. Nevertheless, nobody is likely to call in the psychiatrist despite all of these emotions, and nobody should think of it for CFS/M.E. either.
CFS/M.E. has many analogous features to the broken leg case. It too has no "cure" as such. The best treatment is to rest and wait. And the evidence is mounting that failure to rest in the early stages can endanger one's chances of a full recovery. That is why it is so essential to get as rapid a diagnosis as possible, and to understand the special nature of the illness that one has got. It may be the case that one or more of the natural treatments may hasten the recovery, although the large scale statistical studies that will be necessary to establish this are currently lacking.
It may be too that in the Andes rain forests or the mountains of Tibet there exists an as yet unexamined plant that could affect CFS/M.E. as comfrey affects bone tissue; but so far this remains only an intriguing conjecture, although there have been unsubstantiated claims made for germanium, evening primrose oil, pau d'arco, echinacea, and various chinese herbs.
Where the analogy with the bone break ends is that, unlike a skiing accident, the length of time we have to wait to recover is on the order not of weeks, but of years; and ominously, there is not the guarantee of complete recovery even then. Moreover, unlike the bone fracture, one class of primary symptoms of CFS/M.E. are the mood changes which can include moderate to severe depression.
Although CFS/M.E. may have occurred at times in the past (Charles Darwin is reputed to have shown typical CFS/M.E. symptoms) it apparently became endemic only in the late 20th century. And because it is so new we are the guinea pigs learning about the nature and course of this illness, or what may actually be a family of illnesses.
It is difficult to quarrel with complementary medicine's position that CFS/M.E. has stress-inducing, or better stress predisposing, components. The question is however, what kind of stress, when, where, and how? One stress pattern (the so-called Type A behaviors), which increases the risk of cardiac failure, has been studied and so far not found to be significantly related to CFS/M.E. My intuitions tell me that the term of opprobrium "yuppie flu" has a germ of truth in it. The germ is not that we are mediocre individuals pathetically trying to be high achievers; but rather that we are quite ordinary individuals who out of a strong sense out of loyalty, dedication, or commitment, remain overly long in situations without taking the necessary breaks or vacations that would recharge our batteries. In this hypothesis, some (and I emphasise some) CFS/M.E. cases are the body's final desperate way to stop us, to bring us to a complete halt when we ourselves have refused to do so. And perhaps, had we listened closely enough to our bodies at the time, we might have picked up the warning signals and impending danger.
So far I have mainly been critical of a simplistic application of alternative medicine to CFS/M.E. To balance this picture I want to end with where I think, at this early stage in the research and treatment of CFS/M.E., alternative therapies can be most useful.
(1). Because the complementary viewpoints are holistic and do emphasise the effects of lifestyle imbalances as causative predisposing factors, these therapies can provide us with research models that seek to identify precisely what kinds of lifestyles are predisposing towards CFS/M.E. It is not enough to parrot the truism that mind and body are inextricably intertwined. We need to know what particular patterns of stress behaviors and predisposing circumstances are correlated with CFS/M.E. onset. This is the basis of preventative medicine, orthodox or complimentary.
(2) By validating that viral depression is a sign and symptom of the illness itself, that it is as likely as any other symptom of the illness to resolve itself in time, we give hope, understanding, and empathy—qualities that in CFS/M.E. are more useful than exhorting sufferers to try to gain control of an imaginary energy switch. My own experience with over three years of this illness tells me that the more I struggled to gain control, the worse the illness became. It was only when I gave up and began to just wait that gradually in the fullness of time, nature's own (not mine) good time, I was one of those graced by forces beyond myself to be granted some recovery.
(3) It is true, as Michael Endacott reminds us, that once we begin to get a hint of recovery we do need to very definitely learn to listen, and to obey, the body. We need to look very deeply into ourselves to try to discover, if we can, any lifestyle factors that predisposed us to CFS/M.E., so as to ensure that we heed the lesson(s) of the illness. This is crucial for reducing the likelihood of relapses, and thus for ensuring that the duration of the illness, long as it is, remains as short as possible.
(4) Finally, by addressing the original imbalances that predisposed us to fall to CFS/M.E. (note, I did not say cause CFS/M.E.) we are likely to discover a complex causal nexus involving lifestyle, constitution, climate, probably local air pollution levels, as well as a family of viral pathogens. To the extent that the complementary approaches, by their holistic focus, can identify pathological factors in lifestyle and environment, they can indeed complement the virologists, immunologists, neurophysiologists, and microbiologists who are seeking to specify the body malfunctions that underlie the symptomatology we call CFS/M.E.
This two-pronged research programme seems to me to represent a true complementariness that in time will give us a full understanding of the illness. We all fervently hope it will guarantee cure, but certainly it can provide prevention, which if not for ourselves but for those to come, is of no less importance.
Revised 22 Oct 91
This paper appeared in M.E Interactions, Jan/Feb 1992.
Endacott, M. (1990) A complementary approach. M.E. Perspectives, Autumn issue.
Engle, G. (1977) The need for a new medical model: A challenge for biomedicine. Science, , 196, 129-136.
Dowsett, E.G., Ramsay, A.M., McCartney, R.A., and Bell, E.J. (1990) It's called Myalgic Encephalomylitis—a persistent enteroviral infection? Postgraduate Medical Journal, 66, 326-530.
Nineteen syndromes (to which I would add hypoglycemia and candida) easily confused with CFS/M.E. have been compiled by Cheney, P. and Peterson, D. and reprinted in the M.E. Network, July 1990.
A view of positive thinking that implicitly acknowledges CFS/M.E. to be a scientific anomaly may be found in: Greig, Roland (l990) Optimism, pessimism, and all that jazz. M.E. Newsletter, Spring issue, 13-15.
Dunbar, M.F. (1943) Psychosomatic diagnoses, New York: Hoeber.
A recent suggestion (Wessely, S.  Old wine in new bottles: neurasthenia and "M.E.", Psychosom. Med., 20, 35-53) is that CFS/M.E. is only a new name for neurasthenia, the lassitude and listlessness brought on by a period of prolonged creative or social unfulfillment and frequently diagnosed as psychogenic in Victorian times. However, a careful inspection shows the two syndromes to differ both in cause and effect.
Durndell, A. A 2nd report to health and safety committee on post viral fatigue or M.E. at Glasgow College. August 1989.