Author
Denis Scadeng is a recently retired Biologist with teaching and research interests in cell biology and physiology who is concerned that uncritical belief in pseudoscience and superstition has a serious effect on the perception of scientific and medical issues. He has had direct family experience with CFS/ME
Summary
Alternative remedies are widely used by people with CFS/ME. These have a purely psychological rather than a physiological effect. The obsession with such remedies by sufferers and support organisations is one of the reasons why so many doctors believe that CFS/ME is psychological. This holds back progress in research and medical care to the detriment of all with this serious organic illness. Reliance on these therapies also obstructs the use of treatments more likely to lead to full recovery.
Alternative "medicine" and CFS/ME
- magic bullet or just magic?
by
Denis Scadeng
CFS/ME is a very real and serious illness. There has long been a debate as to the nature of the illness, with the psychiatric "all in the mind" (imaginary) at one end of the spectrum and a single infection at the other end. There is a growing body of evidence that it is physical but involving the brain and neurological system rather than the rest of the body, probably triggered by stress or other factor. However, many patients suffer from the attitude of doctors (GPs and Consultants) who seem to be uncaring and/or lack knowledge of the nature and effects of the illness. This attitude of doctors is probably the most common complaint expressed in magazines, support groups and email groups. The attitude of some of the medical profession has always been a mystery to me. It is difficult to understand why doctors, who are caring and want to cure their patients, have this attitude. The perception of CFS/ME by the medical profession is important to the wellbeing, and eventual recovery, of every person with the illness. The question is, why do so many doctors believe that CFS/ME is not a real illness and react as if patients are hysterical or deluded? The answer to this is complex but I believe, unfortunately, that a major factor in engendering this attitude lies in the behaviour and views of some patients. I am not saying that these patients are responsible for their illness but I am saying that they are, in part, responsible for the perception of the illness by others, including doctors and so may delay their own recovery.
Everyone who is ill wants a Magic Bullet type of cure, like a shot of Penicillin knocking out bacteria. Is there a Magic Bullet for CFS/ME? Alas, at the moment the answer is no. Most people do recover but they do so by managing the illness with, if necessary, the aid of conventional medication to moderate the symptoms and allow the body to re-establish normal function. This may not be very satisfactory but it is all there is – no Magic Bullet and not much help from medicine. Understandably, in this situation many sufferers look towards alternative medicine. Support organisations and their magazines are obsessed with alternative therapies and dietary supplements. Does this matter? I think it does and I also think it is very damaging to all with CFS/ME. Belief in alternative therapies of doubtful utility is a major cause of the antagonistic reaction to CFS/ME by the medical profession. In the time I have been involved, I have seen hundreds of practices, potions and pills suggested as the final Magic Bullet. They can't all work and I doubt if any of them do anything to affect the course of the illness.
A treatment, therapy or therapeutic substance should have some proven scientific basis. The statement that "if it works, don't knock it" is dangerous. We all want to convince others that CFS/ME is a real organic, physical illness, which should be taken seriously by the medical profession. That some alternative therapies have an effect is undeniable, but the most important question is not whether they work but how they work and for how long the effect lasts. The vast majority of doctors accept that these therapies only have a placebo effect. They do not directly alter the biochemistry or physiology of the body. They are a form of faith healing and they work because you think they work. Witch doctors and shamans have known this for thousands of years. The danger is that a belief in quack remedies sends conflicting messages to doctors. On the one hand a person may claim to have a physical illness but on the other hand he/she may report successful use of a placebo which, by definition, can only have a psychological effect. Is it any wonder that doctors behave as if CFS/ME is purely psychological when patients themselves project this image?
Many will take exception to my reference to alternative therapies as placebos. Well, consider the following widely used treatments.
Homeopathy
A form of treatment in which a substance is so diluted that statistically there are no molecules present. Explanations about water memory are fatuous. I wonder if even homeopathic practitioners believe that this can affect the specific physiology of the body. Even the selection of the therapeutic substance is based on the medieval concept of the "doctrine of signatures" as adopted and codified by Samual Hahnemann in the 1800s. This cannot have any effect other than that of a placebo. A special case can be made for the Bach Floral Remedies, in which the dew from one of 38 flowers is diluted homeopathically. Here, at least, it is bottled in 25% alcohol but it is cheaper and better to buy gin!
To illustrate the absurdity of homeopathic dilutions. A 30X solution is diluted 1 000 000 000 000 000 000 000 000 000 000 times. A 100C solution has too many zeroes to fit on a line. There is a 200C potion for the relief of colds and flu which has a dilution of 1 in (1 with 400 zeroes) - a figure 4 times the estimated number of molecules in the universe.
Also, there is a headache homeopathic "cure" where the instructions say for a mild headache take one drop for a severe one take three. If homepaths really believed "the more dilute, the more effective it is" then this is the wrong way round.
Acupuncture
Based on the concept of the flow of Qi (an ill-defined form of "energy") along meridians connecting different parts of the body – Twelve Primary Channels and the Eight Extraordinary Vessels. Sticking needles in one place to affect some remote organ is a nonsense. The Yin and Yang concept is ludicrous and the explanation that the meridians and Qi are undetectable by science is very convenient. Even if acupuncture physically inhibits nerve transmission and the perception of pain, to claim it as a cure for a condition such as CFS/ME is an unacceptable extrapolation. The denial by Traditional Chinese Medicine (TCM) of the role of pathogenic micro-organisms in causing illness is also indicative of the weakness of its knowledge base.
Anyone with a belief in Acupuncture and other forms of TCM should look at the mortality rates in China over the last 4000 years. That such rates are now improving is due entirely to the adoption of western medicine and public health. It is also significant that when one of the Chinese leaders is seriously ill, he is on a plane to a Swiss Hospital before you can say Yin and Yang.
Reiki
This is the application of the "Universal Life Force" by pushing positive energy towards and negative energy away from the body. It is claimed that it can cure into the past as well as into the future. Curing into the past should introduce some interesting time paradoxes. Curing into the future is even better - it means that the person will never get ill - perfect proof! It can also cure someone thousands of miles away. The best, though, is that Reiki Masters get told the secret symbols by which they can conjure up the Universal Life Force. This is magic - genuine primitive magic of the abracadabra and wave a wand variety! It is also claimed that Reiki can fix broken clocks! I find it incredible that anyone can believe in this kind of mumbo-jumbo and I am sad that a recent article in the magazine of a UK support group gave credence to this nonsense.
Reflexology
The idea that massaging the feet or hands can directly and physiologically affect all organs of the body. The transmission channels are "undetectable". It conveniently igmores the fact that hands and feet are under continuous stimulation as we go about our everyday business without affecting the so-called target organs. If reflexology is true, then a footballer kicking a ball would get one hell of a headache!
Applied kinesiology
A system of "testing" for nutritional deficiencies, allergies, adverse reactions and almost any illness. This is based on the idea that a "good" substance makes a muscle strong and a "bad" one make it weak. The test material, which may be sealed in a glass vial, is placed next to the patient and the practitioner presses down on the raised arm. If the arm moves down, the muscle is "weak" and the patient is allergic or an organ is not working properly. This "test" can even be performed on a parent to see if a child is allergic to something. Applied kinesiology is also used to evaluate nerve, vascular and lymphatic systems as well as flow of "energy" along acupuncture meridians. A practitioner can get through about 150 tests in half an hour - a nice little earner! This, in fact, is a variation on a very old trick used by stage magicians.
Dietary supplements
A look at the adverts in support organisation magazines will show claims for virtually everything that can be made and sold at a profit. Of course, it is possible that someone with CFS/ME is deficient in, for example, a vitamin as a result of a dietary intolerance. Provided this deficiency is properly diagnosed, preferably by a method other than applied kinesiology (an old stage magician's trick), then the diet should, of course, be supplemented. Unnecessary supplementation can, however, overload the system and aggravate existing problems as shown by recent research into use of Vitamin C. Over use of vitamins just produces very expensive urine.
It is also possible that some organs, such as the thyroid, are undersecreting but again this requires a precise and unambiguous physiological assessment. A top-up of the secretion can be very dangerous unless carefully monitored. Beware of doctors who promise to test for thyroid deficiency that "cannot be shown by conventional tests."
Other substances litter the advertising pages, often based on a meagre knowledge of biochemistry. Many would not survive the digestive process, which is just as well because some of them would interfere with the regulation of metabolism.
Advice
Advice given to patients by alternative practitioners is often very vague but scientific sounding. "Getting rid of parasites" is a current favourite. The nature, location and physiological effect of the parasites is never mentioned. "Clearing the body of toxins" is another vague justification for various expensive therapies. This is usually accompanied by a statement that the patient will feel worse for a year or so while this is happening - very convenient. Interesting that the same claim about toxins is made in certain religious practices, such as fasting.
Excuses
These therapies fail, i.e. the patient does not recover - the only criterion by which they should be judged.. At this point the alternative practitioner usually explains it away by the excuse that "all people are different". This, of course, is a nonsense. We all have the same physiology, anatomy and biochemistry. If we were all different then conventional drugs and treatments could not work and research into medicine would be impossible if the results from a trial could not be applied to the general population.
The Internet
For anyone with an open mind who is prepared to look objectively at this area of treatment, the Internet is a mine of information put there by the practitioners themselves. For sheer nonsense, I can particularly recommend the "Medicine Garden" in which a shaman offers homeopathy and acupuncture, as well as Medical Astrology and Soul Extraction and Recovery. David Schweitzer's site (http://www.davidschweitzer.com) displays photographs of the effect of thought on water, taken, as it happens, using a microscope with the light badly adjusted. He also sells things.
There are lots of sites which include "explanations". These accounts are sprinkled with scientific terms in an attempt to convince readers that there is a genuine modern basis for these dubious therapies. They abound with scientific half-truths and non-sequiturs and exhibit a very meagre knowledge of elementary human physiology and anatomy. All these sites are good for a laugh and would be harmless fun were it not for the fact that vulnerable people are taken in by them and may be badly damaged.
I can recommend Quackwatch at http://www.quackwatch/com/ which is a wonderful, informative and entertaining web site with a vast amount of factual information on alternative medicine and medical quacks.
I have a very poor opinion of alternative therapies for two main reasons.
One, their effect, if any, is placebo based and short lived. The second is more fundamental and is my reason for writing this article. Doctors see a wide range of patients. There is, however, a category termed heartsink patients. Typically, they come in clutching a copy of a tabloid Health Page and demanding the latest miracle cure or, even worse, they quote from the hypochondriac's bible "What Doctors Don't Tell You". These patients are demanding and insistent. They often threaten violence and many are psychologically disturbed. As doctors are not allowed to prescribe placebos as such, they are often recommended to try alternative medicine. People with CFS/ME may get treated in the same way. While I regard this as totally unjustified, I do understand why it happens. Someone who sees a doctor and extols the virtues of these therapies quoting sufferers who were cured by magic (e.g. Reiki) can expect little else. They are, in effect, saying that they have a psychological problem and want a placebo. They should not be surprised if the doctor agrees with them.
It seems to me that that time has come for those suffering from CFS/ME have to ask themselves some serious questions.
Do they believe that they have a real physical illness in which part of the physiological system is not working properly? If they do, they should not send conflicting messages to doctors, indicating that they have a psychological problem.
Do they use alternative therapies (e.g. homeopathy, acupuncture, Reiki)? If they do, then they should be aware that some doctors, knowing them to be placebos, interpret this as an indication that CFS is purely psychological.
It could be argued that using alternative therapies is a matter of private belief and I have no right to criticise something that many feel to be helpful. However, I argue that use and acceptance of these quack remedies affects the perception of the illness by the medical profession and this has an adverse effect on research funding and early diagnosis. It, therefore, affects you, and everyone else hit by this real and physical illness. When people are not properly diagnosed with CFS by their doctors, it could be because of the attitude and behaviour of other patients.
On a more direct personal level, many sufferers try a succession of alternatives even though each one tried fails to bring about recovery. One result of this is to delay the application of the type of treatment which does work. Under these circumstances, the use of alternative therapies may prolong the illness to the point where recovery is impossible making them a major perpetuating factor.
I believe that a genuine cure for this illness can only come from serious scientific and medical research and that the present obsession with quack remedies holds back progress. The result is continued misery and the destruction of young and old lives. This is too great a price to pay.
Updated: 24 Oct. 2003