The latest estimate of the number of sufferers is 200,000. This was given by A Current Affair in its item on Professor Gary Scroop of the Department of Physiology at Adelaide University. He has proved independently that CFIDS is a real physical disease. Given that each patient must have at least four close relatives directly affected by the condition, this disease is causing great anguish to at least a million Australians. From the information that I have received it appears that slightly more women than men are afflicted. ( 55% - 45% ) I feel that this is caused by the reluctance that men have in reporting sickness to their doctors. Patients tend to have had the disease for eight or nine years when presenting for treatment to Dr Petrovic. If the patients are adult they usually have been forced to become medical researchers in their own right. Large communications networks have been set up; often on the Internet. Any new development rapidly becomes general knowledge as the news is passed on. Many people are watching current progress in Australia and wondering how they can raise the money involved as they see the evidence building up that this is in fact a cure. A number of so-called cures become popular for short periods. The China cure is experiencing a surge at the moment. One of the latest patients to take the protocol found that her condition regressed after over six months of the treatment while actually taking the cure IN China.

If the patient is a child it will almost certainly have been told that it is a malingerer and been FORCED to go to school. School psychology services have recommended that a psychologist and a teacher visit the child and make them sign a document agreeing to go to school a certain number of days a week. I said when this happened to my granddaughter that they might just have well hung a sign round her neck saying, " I AM A LIAR ! "

As doctors use antibiotics in so many areas of medicine it is not surprising that they feature in many case histories. They are sometimes used to combat chronic inflammation and in fact they often exacerbate the tendency for CFIDS to develop. In the famous Penny Vincent case they caused a bacteria to mutate in to a flesh eating type. It is very unfortunate that with a limited number of options to try conventional doctors are continually coming up with antibiotics as being a magic bullet for CFIDS. It has been found that long-term treatment with anti-biotics impairs the detox function of the liver. Some is usually stored in fat tissue and can create long term damage when it is slowly released. A range of chemical sensitivities may be encountered.

The severity of the disease varies as widely as the symptoms. ( One sufferer [ cum researcher ] told me that there were at least 80 well known symptoms. ) Robyn had one of the rare ones where the eyeballs feel too big for the sockets and the eyelids seem to be tearing apart. Patients may be permanently incapacitated or bed-ridden In extreme cases they may only be able to keep awake for a few minutes at a time. On the other hand they may be able to work nearly full time and try to carry out their normal family responsibilities. These people usually spend the weekend in bed recuperating. It is not unreasonable that badly affected patients tend to think that the more able people dont actually have CFIDS. In addition to the anguish caused by constantly seeking a diagnosis or a cure there is a severe financial drain as medical specialists are consulted and various treatments tried. In the case of some patients, a child for instance, an adult often is forced to curtail or give up a career in order to take on the role of a carer.

A mother of a patient in Hawaii has kept a meticulous record of her search for a diagnosis and a treatment. In a little over a year her daughter had to endure visits to doctors, an infectious disease specialist, a chiropractor, nutritionists, psychiatrists, an acupuncturist, a rheumatologist, a stress management psychiatrist, a physical therapist, a pediatrician, and a neurologist.In a last desperate attempt to find a remedy the mother bought Cats Claw, a South American miracle cure. She said that she felt like a desperate sinner ready to give money to ANYBODY who would promise salvation. The patient was prescribed many antibiotics plus prozac, tylenol, elavil, davil, zoloft, diflucan, nystatin, melatonin, florinef, K-dur and noni-juice. She had to suffer blood tests, allergy tests, CAT scans, a Tilt test for NMH ( Neurally-mediated hypotension ), which the mother described as a miserable experience. If she hadnt been sick before she started all this Im sure that she would have been by the time she had finished.The mother said that the best advice that she had been given before finding the website was from the nutritionist. Her advice was a diet without sugar, vinegar and dairy products. She prescribed Co-enzyme Q10, acidophilus, super blue-green algae and more protein. The mother wished that she had followed the advice to the letter, and ignored everyone else.

Claire Francis Famous lone-handed sailor and popular detective fiction writer summed up what CFIDS means to the sufferers when she wrote, " To have ME is to experience hell twice over, firstly through the devastation of the disease itself, and secondly through the lack of diagnosis, information and supportthat most sufferers have to endure."

28th June 1998