Following the Complementary Medicine in Chronic Fatigue Syndrome National Consensus Conference 19 1995, I was asked by many doctors why it was that Complementary Medicine practitioners saw and treated so many of the Chronic Fatigue Syndrome patients.
One answer, I suspect, has something to do with the attitude of the orthodox medical profession when confronted with an illness which does not fit in easily to a known disease category. Women wait for nearly 5 years for their doctors to make the correct diagnosis (in men, the diagnosis is made in under 2 years on average, but that's a whole different story!), and most have been sent to psychiatrists, given drugs which worsen the problems, or have simply been abandoned by a doctor who feels powerless to help.
The real answer, however, seems to be that Complementary Medicine practitioners are seen as integrating a broad range of approaches to manage the illness. The sufferer is not left with the "hit and miss" approach of modern medicine, but moves towards recovery by working with the practitioner and using all resources simultaneously. Sufferers win lots of small battles with their practitioners, and while no one thing "cures" the illness, the sum of all the small wins lets them get on with life again.
One of the finest proponents of the "integrated" approach to Chronic Fatigue Syndrome is Dr Paul Cheney, from the USA. His presentations were the highlight of the CFS Conference, and the demand for his information was so great that he came back for "The Cheney Protocols" workshop in Sydney in July last year.
I learned more about CFS in three days with Dr Cheney and a dozen other practitioners than in the whole eight years I had been treating people with the illness. I will outline a few of the major "take-home" points, but this in no way covers the complexity or richness of the protocols or approaches. You can get the names and telephone numbers of all workshop participants from the Institute of Functional Medicine, Dr Cheney's sponsors (02 9929-6404). Referring CFS patients to these practitioners is an excellent way of gaining an understanding of the integrated approaches for diagnosing, categorising and managing the illness.
A summarised "flow-chart" for the diagnosis of CFS is included in figure 1. The most important issue is the use of standardised questionnaires and checklists, so that other treatable illness is not missed, and the diagnosis of CFS can be objectively confirmed.
The Chronic Fatigue Syndrome CDC Checklist was produced by ACMA following the Conference last February, and is available by faxing +61 2 9968-4778, or by an email request to ACMA. It is an easy to use summary of the complex case definition, takes only a few minutes of the consultation, and ensures that all practitioners reach the diagnosis reliably.
Once the diagnosis is made, the severity of the illness and degree of disability is assessed by the Metabolic Survey Questionnaire (MSQ). A copy is included with this newsletter, and more are available from the Institute of Functional Medicine (tel: +61 2 9929-6404, or email the Institute of Functional Medicine). This is completed by the patient prior to the consultation, and provides both a single score to assess overall disability, and a breakdown by organ system to help categorise sufferers and prioritise treatment.
Successful management depends on prioritising treatment, and knowing what to treat and what to leave alone. If the major problems can be reversed or relieved, the sufferer will often recover from the minor ones by themselves.
Having said that, there are recurrent basic themes to the treatment of most CFS patients, and these are:
In simple terms, resting the GIT is achieved through dietary restriction and an appropriate hypoallergenic nutritional agent such as UltraClear. We found out the hard way what happens if you restrict food intake without supplementation in our hospital ward, the Special Environment Allergy Clinic, some years ago. Fasting caused nearly half of our patients to develop abnormal liver function tests, even though all were normal before entry. All recovered with the hypoallergenic food substitute, and once we added this to the hospital protocol, the problem went away for good! These people are on the "knife-edge", just making it through from day to day. Take away their food without supplementing and you risk decreasing their protective agents (Glutathione, cysteine, antioxidants) to unsafe levels. We caught ours because we were doing pathology testing. It is better to use the nutritional replacement in all so that the problem does not arise at all.
Once the GIT is "rested", it is important to restore normal function, and this is most often done with probiotics. In my own practice, just under two thirds of all CFS patients had been given broad spectrum antibiotics lasting over six months in the years prior to their illness. I think we may yet find that the iatrogenic (doctor caused) contribution to developing CFS, especially with the use of antibiotics for acne, tonsillitis and cystitis, is one of the biggest unrecognised factors in this illness. The probiotics, such as L. acidophilus and Bifidobacterium bifidum, are simple, non-toxic and effective in long term restoration of GIT flora, especially if care is taken with quality and storage to ensure viability. Younger patients may need a different balance or type of bacterium. Although B. Infantis is unlikely to be needed in CFS management (babies cannot complain of the necessary symptoms!), using these following any necessary courses of antibiotics for the child (or breast-feeding mother) can prevent the GIT problems which may later lead to CFS.
The probiotic program, like the hypoallergenic nutritional supplementation, is a long term program. Both need to be used for months, and well beyond the point where the sufferer begins to "feel better". The most tragic mistake in treatment is to be winning the battle with a therapeutic program, then stop it too early, or have the patient cut their treatment short to save some money. You can often only stand by helplessly as the person's health deteriorates. Trying to treat it the same way again does not work as effectively, and unfortunately sometimes does not work at all. In those cases, it is back to square one, restarting the program of diagnosis and treatment. Ceasing treatment is just is not worth the risk, and sufferers should be told this up front so that they know the duration of treatment and the risks if they decide to stop short. This is a major part of informed consent.
Neuromuscular Symptoms
The nervous system and musculoskeletal symptoms are often best managed simply Adequate magnesium, effectively delivered to the cells, is essential here, and is sometimes all that is needed. We have in the past used intravenous or painful intramuscular injections with excellent effect, but lots of pain and dizziness. The new range of mineral transporters such as orotates and aspartates should make this unnecessary for most sufferers. According to Dr William Rea, CFS sufferers and chemically sensitive patients are always deficient in Magnesium, and need large doses for a long time to restore what is a "whole body deficiency". Again, patience and persistence pay off for both practitioner and patient.
One of Dr Cheney's major contributions to managing CFS is his identification of the damage to mitochondria, the energy packages of the cell, allowing destructive free radical damage within the cell itself. It makes sense of the value of antioxidants in long-term recovery, despite their limited value in treating the symptoms.
His other contribution is identifying the NMDA receptor neurones as a source of ongoing damage in the brain. These receptors are highly stimulatory, and when triggered as strongly as they are in CFS, tend to cause damage through this unopposed stimulation. This kind of damage happens in strokes and in some degenerative diseases (including Parkinson's disease, and possibly Alzheimer's disease), and has now been identified in CFS.
One of the simplest and least toxic ways of helping manage both the mitochondrial and NMDA problems is - you guessed it - Magnesium. It is not the full answer, and it should always be used in conjunction with antioxidants and a good nutritional program. But if orotates and aspartates are used as the intracellular transporters, then it is a valuable addition to the whole CFS management program.
If you require further information, please contact the author by email, or fax +61 2 9968-4778
Dr Mark Donohoe
Last modified 3/3/98