The reality is PAIN . It is pain seemingly without a cause. Most doctors have not been faced with this sort of pain before. This seems to be the reason why so many patients have been told that the problem is in the mind, or have been referred to psychiatrists so that they can tell the patient that it is in the mind. One patient, who was sure that the problem wasn’t mental, went to see a psychologist. The psychologist told him that he had rarely seen a stronger mind, and not to worry about the diagnosis.

The ‘ In the mind ’ diagnosis, is not only devastating for the patient, but it can be devastating for a relative, such as the mother of a child. This stress is then greatly magnified if the relatives believe that the patient HAS a mental condition and begins to treat the patient accordingly.

The pain has caused many patients to think of, or to try, suicide. A recently cured patient threw herself from a moving car, sustaining serious injuries. Karen Missing, another cured patient, said that if she had had a gun, and the strength, she would have got rid of herself forever. The experience of pain in the bone as well as the muscles is common. Yet another cured patient, S.W. Cooke, said, " The pains of someone scraping a knife in my bone marrow were a common occurrence."

A prominent researcher reporting to the U.S. Congress said, " A CFIDS patient feels every day significantly the same as an AIDS patient feels two months before they die."

Barry Sheen, a prominent Australian motorcycle champion, has had many crashes. In one he was dragged across the track and broke both legs. He said that this pain WAS A CINCH in comparison with the pain of CFIDS. Barry popularised for a time the practice of taking icy-cold baths as a treatment.

One American doctor treats patients with buprenorphine which is a pain-killer fifty times more powerful than morphine. It has been said that one aspirin ages the brain. [ Beating the Age Barrier, Russ Gleeson ]. Heavens knows what a drug this powerful would do to a patient’s brain. The doctor feels that in beating the pain he has cured the disease.

Mental abilities

In addition to the stress induced by the fact that the patient has been told that the disease is in the mind, the disease does start to affect mental functioning. The most obvious sign is what is called " Brain Fog". Healthy people can only guess at what this means, but CFIDS people know instantaneously what it is. Numerical calculations become almost impossible to carry out. The patient becomes forgetful and indecisive. It is tragic to hear about patients who have the money for the protocol, but are unable to make the decision to take it. In an extreme case like this, where a major cause of the disease was working all the time with chemicals that produced ‘ free radicals ’, the patient lost the ability to read.

When patients actually start the Petrovic protocol it is very difficult for them to look at themselves objectively and asssess the forty or so symptoms on a numerical basis. It is often better if a close relative is able to assess the changes that are so apparent to them.

Physical signs

I obviously can’t list the vast number of symptoms previously mentioned, but some are critical indicators of progress. Some people think that irritable bowel syndrome is a major sign of CFIDS. As the gut has such a vital place in the story of CFIDS stomach problems are almost universal.

Doctor Petrovic has graphs on his website showing typical recovery rates from eight important indicators of CFIDS. They are headaches, memory lapses, depression, stiff neck, nausea, dizziness, general fatigue and mild fever.

Robyn ( is my granddaughter - for those who are new to these information sheets ) was VERY DEFINITE that she suffered from TWO types of dizziness.

Dr John Coombs of Vancouver, Canada, is supervising local patients who are taking the protocol. He has independently developed an exhaustive assessment sheet based on tasks that the patient can actually perform.

28th June 1998