Like most People With CFS (PWCs), obtaining a diagnosis and suitable treatment has been something of a battle. Sufferers have to fight against the very system that is supposed to give them care, treatment and support. This cruel situation arises unsurprisingly because the powerful end of the medical establishment is concerned more with egos, politics, stubbornness and turf-protection than it is with objective analysis, caring, or even a modicum of insight. In thinking about the reasons why CFS care and treatment in the 21st century is so appalling, there are six factors in particular which it occurs to me have made life unnecessarily hard for PWCs:

• There is an almost complete lack of knowledge about CFS by primary care givers (General Practitioners in Australia), as well as by specialists and by the responsible government agencies.
  
• Traditional western medicine has difficulty in knowing how to deal with conditions for which there are no unambiguous tests. The historical response to this situation has been to blame the patient by stating the condition is "all in the head". CFS has been no exception and it is only in the last few years that mainstream medicine has switched from this view. In the meantime patients have suffered substantial psychological and physical damage because of this unjustified, spineless and truly stupid stance.
  
  
• The establishment CFS research agenda has been hijacked to a large extent by psychiatrists and ultra-conservatives, some of whom exhibit breathtaking stubbornness in their inability to see the damage they are causing by their narrow view of the "correct" treatment approach. This has led to suppression of much "physical cause" research effort and humiliation of its protagonists.
  
  The situation is similar to the often quoted vilification of researchers Marshall and Warren when they dared suggest peptic ulcers were caused not by stress ("blame the patient") but by a bacteria. For many years these researchers had to endure sustained establishment criticism until one day in the early nineties, in an astounding about-face, this same group of powerful decision-makers neatly pirouetted and began promoting the theory as though they had thought of it themselves.
  
  The same kind of abuse is used today regularly to discredit CFS researchers and clinicians who risk their reputations to pursue non-establishment approved treatments and research.
  
  
• The vindictive establishment line has discouraged most good doctors from taking an active interest in CFS, with the result that the field is left wide open to more opportunistic doctors and alternative practitioners. Many of these prey on patients' desperation and in the process bring the whole of leading-edge CFS treatment into disrepute.
  
  I quickly add that there are some excellent doctors who dispense good CFS medicine, but they are a minority and are really sticking their necks out when it comes to their powerful peers.
  
  
• Most doctors and researchers in positions of power exhibit a suitable natural conservatism, a fear of the unknown and unspeakable fear of potentially limitless treatment costs. By "suitable" I mean in terms of preserving the good graces of their masters, not suitable in terms of what is best for sufferers of chronic conditions. Such characteristics deprive them of the nerve they would require to stand up and accurately brief the decision-makers. Instead they defensively place impossible demands on the results that they would require from research before accepting that the research has "proved" that the tested CFS treatment is worth pursuing.
  
  If these demands had been in place for the last 5000 years we still wouldn't know how to treat a broken leg, since there has never been a properly controlled trial to demonstrate that sticking the leg in plaster is better treatment for broken legs than cognitive behavioural therapy or garlic applied daily to the navel.
  
  The insistence on "evidence-based medicine" has been allowed to blind the profession to many useful insights and treatments that undoubtedly do help some CFS sufferers.
  
  
• Associated with the last point has been a deliberate or unbelievably stupid misuse of statistics and the rules of "evidence-based medicine". Such abuse has been used to throw out a great deal of research which in fact has identified useful treatments and useful directions for further research. How so? Simple...
  
  Even the experts agree that CFS is a poor description of a series of different conditions — that is, they agree that there are multiple etiologies involved in CFS. By this they are saying that the causes and processes in one sufferer are not necessarily the same as in another. This is not altogether surprising since the very name Chronic Fatigue Syndrome means no more than "some sort of chronic condition that we can't otherwise explain which makes people tired at times". When you think about it, this definition will include just about every serious systemic chronic condition that hasn't yet been identified. The current tortuous medical definition of CFS is designed to exclude known problems and ordinary tiredness but does nothing to differentiate between the multiple etiologies.
  
  So we have a series of conditions all lumped together in one basket. A successful treatment for one of these conditions (let's call it a CFS "subgroup") is not likely to be successful for another subgroup. To add to the complication for an observer, sufferers will improve and get worse regularly without intervention due to the natural cyclical nature of these permanent but varying conditions.
  
  So what happens when you attempt a serious trial of a new but useless treatment on this heterogeneous collection of sick people? Well for one thing, over the course of the treatment, a largish minority can be expected to improve significantly anyway — partly due to the natural cyclical variation described above, and partly due to the placebo effect. Let's say 30% would have improved anyway during the period, and 10% improve due to the placebo effect. Then even though the treatment is absolutely worthless, you might see 40% of patients reporting "some improvement". This figure could instead be 10%, or it might be 50%.
  
  And what happens when on the other hand we trial a treatment which actually successfully treats ONE of the CFS subsets? Well that depends on how big the subset is - if (let's say) it is a fifth of all the people in the trial then you would expect 20% to show substantial improvement due to the actual treatment. And of course you will also have 10% or 20% or 40% whose conditions are not actually helped by this particular treatment but who will report a real improvement for the reasons given above.
  
  The difficulty here appears to be self-evident, but apparently completely escapes the understanding of Those In Charge. In this simplified example, if the treatment is useless (as it would be for the control group in a trial), we might see 10% to 50% reporting improvement. If the treatment is fantastically (100%) successful for ONE of the conditions we call CFS, we might see 28% to 60% reporting improvement. Not so easy to tell the difference is it? So the experiment will inevitably be cited by Those Who Should Know Better as having shown that the treatment is not better than placebo and should not be used for CFS patients. While in fact it could be the magic bullet for 20% of all PWCs.
  
  You might argue that of course these researchers are more sophisticated than this - that they use exotic statistics to separate the 10-50% from the 28-60%. It is true that they do use statistical techniques in an attempt to determine the probability that the treated group has been actually helped more than the control group. But, and it is a big but, these statistical parameters are based on the assumption that all of the trial subjects have the same disease. Which we know they don't. So a statistical test which is designed to tell us if a treatment is successful for a homogenous test group is being used on a heterogeneous group.
  
  Another way of looking at this is to say that if the researchers are using a trial group just large enough to demonstrate the required statistical difference between treated and control groups on people with the same condition, then it will NOT be large enough to demonstrate the same thing for a group with several different conditions. Since funds are limited, and since the size of the subgroup within the total group is unknown, no researcher is likely to use a large enough trial group to distinguish between a control group and a small proportion of the treatment group. Consequently they will not be able to determine the success or otherwise of a treatment.
  
  Since all this is or should be known by researchers and decision-makers of great intellect, one has to wonder why they insist on drawing conclusions based on such bad science. The application of statistical tests designed for homogeneous populations to what is actually a heterogeneous trial group narrows the goalposts to scarcely more than the width of the ball. The result is that it is unlikely that ANY treatment will ever be measured as useful — unless there happens to be a very large dominant etiological subgroup, or until the subgroups are separated.

The official approach to CFS in Australia is characterised by a combination of denial and stubborn conservatism. Instead of actively supporting a range of good researchers and giving doctors useful positive advice to help their patients, we have a situation where only one research group is supported by the establishment. Even worse, the clinical guidelines are being produced essentially by this same group, which unfortunately has a strong and unhelpful bias and should not be allowed to dominate CFS research, education and treatment in Australia. A better approach would include:

The Draft Clinical Guidelines were written by a committee established by the Royal Australian College of Physicians beginning in 1996. The process was marked by considerable controversy regarding the selection of the single consumer representative. It was also characterised by the dominance on the committee of what has been called the "Sydney Group" — I. Hickie, A. Lloyd and D. Wakefield, as well as R. Loblay. The Sydney Group has been the recipient of almost all public grants in Australia for research into CFS, and is notable for a very specific set of beliefs about CFS.

To find out more about the guidelines, see The Canberra FM and CFS page which keeps up more or less on the status of the guidelines. The Alison Hunter Memorial Foundation page carries a brief chronology of the guidelines process up to mid-2000. This site also includes the Foundation's comment on the original draft.

* What should my GP be doing? That's a difficult question. I am not blaming any particular GP for this situation - the problem is more structural than one of commitment or ability of individual doctors. What do they need to allow them to adequately service their CFS patients?

1. Doctors need accurate training on CFS while doing their original degrees.
    
2. Doctors need suitable leadership and guidance from the Government/NHMRC/RACP appointed specialists. These exalted people are in charge of developing guidelines and training for the average practicing doctor - most of whom have never heard a word of sense about CFS from the "experts" in their lifetime and are therefore working in a complete vacuum of useful information. The record of these experts to date has been appalling - basing their essential conclusions of "nothing can be done" on a pseudo-rigorous application of the mantra of "evidence based medicine".
    
   Evidence based medicine is no more applicable here (less in fact) than it is to many other accepted contemporary treatments which have never been tested in the required double blind trials, yet are today accepted as best practice. The multiple etiology of CFS almost guarantees that no particular treatment is likely to statistically stand taller than placebo effect in trials. Yet many treatments can be well observed to work for particular subsets of patients, and lead to significant improvements and quality of life. Sadly these have been completely ignored by our appointed experts to date. Since there is no funding available to submit any of these treatments to the expensive testing that would be required to convince the "evidence-based" apologists, and since these apologists are the ones we have to convince before funds are available for research, we are stuck in a most effective catch-22.
   
   
3. Doctors need time - paid time - to do their own study and attend courses on CFS and similar emerging problems while in practice.

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