Dear CFIDS friends,

Things move at an amazing pace. As I write I think the patients committed to the protocol stand at fourteen. Those cured, or about to be cured are four - maybe 5. This has made me want to tidy up facts about the origins of the association.

When I took the decision to write the letter I was aware of the following facts if the editor made the decision to print it.

1. I felt like a schoolboy standing on top of Mt. Everest with a snowball in my hand. I knew that if I threw the snowball there could be dire consequences much later and in another place.

2. I have never had the slightest doubt that the facts were true. I expected a hundred percent rate of cure. This implied for me maybe a first birthday party to be held on the anniversary - May 22nd. In fact the patients are so diverse that they have not one iota in common, except that they have recovered from an incurable disease.

3. As I encouraged seven patients to take this gamble I felt honour bound to try to steer them successfully through the treatment.( I think of them as 'my babies')

4, I was fully aware that what I was doing was going to be a part of medical history, and I knew that it should be fully documented. For this reason I have tried to make the newsletters reasonably lighthearted and full of historical information.

My babies

My babies ranged in age from eight to the fifties. An older lady in her sixties who had had CFS for thirty-six years withdrew at the last moment. There are four females and three males. Their names are:-

1. Phillip - Aged 26 : Cured - Married on September the 13th Mother Julie is a stalwart of the group.

2. Robyn - 8 - Mother Sandra - Nash says condition is Very, Very Good.

3. Richard - Father David - Energy levels starting to rise.

4. Max - aged 41 - His wife Alice is 37 - Max is not too far away from being cured.

5. A Sydney lady -She has had CFS twice

6. A Wodonga lady - was a librarian who only wishes to take her dog for a walk. Her husband assessed her TOTAL symptom points at the beginning of the treatment as 94. In six weeks they are 56. I said, "If you halve them to 25 in the next six weeks you can virtually say you're cured." "Yeah.", she said, with a smile in her voice.

7. Mercedes - 43 - Just starting - mother of two young children. A farmer'swife.
Robyn lives close to Darwin. No 6, Phillip and Mercedes live near Wodonga
Martin, Richard, Max, and 5 live in Sydney

Fantasies

When I created the 'Petrovic Protocol in Australia' name I dreamt that we would have a ceremony at our first birthday where mounted certificates of membership of the Association would be presented.

In my dreams I imagined that the classes of membership would be:

The Inspirer - Naturally Nash

The Trailblazer - Obviously Martin

The founder - Me

Foundation members - My babies plus David, Julie and Sandra

Supporting members - No. 1 ticket holder - Clare

About our patients

Max

Max could be the most atypical of all Nash's patients. On day one he took one step up a ladder. Each day he takes one more step. By now he is at about the eightieth level. All the time he reports with great accuracy exactly what the strength of each symptom is.

In contrast whenever Sandra asked Robyn what her symptom strength was she would answer, "It's a SIX mummy, it really is a SIX !".

A few days ago when I thought that it was time to reveal more about the group, Max said, "That's a good idea. Are they all reacting like me ?" No, Max. They were not all acting like you. They were oscillating (Nash's word).
They often had diarrhoea, stomach cramps and spasms and apparent 'relapses'.

When we first came in contact with Max it was through his wife Alice, who was finding it rather difficult to cope. She had made a decision to go to China for a cure. When she found out about Nash she and Max downloaded 100 pages from the website. The decision was made that she would continue with her treatment, and Max would take the protocol.

Alice is apparently much improved. We are all interested to see what the comparison is.

Max goes to work. After three weeks his workmates told him that his colour was much better. Recently he reported that through this terrible winter all his fellow workers had had sick leave, but he hadn't had a day off !

Mercedes

Took the famous freezing cold water bath treatment. Mercedes said that it made her feel better. When her will power wouldn't allow her to keep up the treatment she felt worse and had to find some other cure.

The Newcastle Researchers

From time to time I am told how disappointed some sufferers are with the Newcastle researchers. Some people believe that they haven't done much, and that they certainly haven't conveyed what they have done to those who made the donations.

'The Researchers' are Professor Tim Roberts and Dr. Hugh Dunstan of the Department of Biological Sciences of the University of Newcastle, Dr. Neil McGregor ( a Newcastle clinical scientist ) and Dr. Henry Butt of John Hunter Hospital.

I can tell you that through Sandra's efforts Nash discovered the implication of the tests that they have developed. They have discovered a urinary marker, and (I think ) a blood lipid marker. They have also isolated seven different categories of CFS. I think that Nash is now looking at curing each category in the most efficient way.

It may be fortunate for us that Nash's attention was brought to these tests. They revealed that Robyn was not absorbing her food properly. He is sending by air, in a temperature controlled container, highly resistant colon flora bacteria. We are hoping that these bacteria will allow Robyn to absorb her food properly.

The researchers have established a series of tests useful for basic research in all diseases. Nash's expertise in curing the disease, and the researchers' ability to measure the state of the body would make a perfect combination. Like Nash, they have placed all the information on the Internet. If you haven't heard about what they are doing it is because unfortunately you aren't looking in the right place.

Support Staff - (Sandra)

The story of the development of the protocol in Australia wouldn't be complete without noting the contribution of Sandra. She has actually apparently discovered a mini-'Lake Tahoe' in Humpty-Doo (N.T.)

Lake Tahoe is an American town where a mysterious, unexplained outbreak of CFS took place. Sandra's daughter Robyn has been treated since she was four for a kidney condition. In late 1996 she was at the Humpty Doo primary school. As she was so lethargic she usually stayed in the room with her teacher during recesses.

The school was so overcrowded that Sandra decided to transfer Robyn to another school after Christmas. While in Chiltern over Christmas it was obvious that she was suffering from Ross River Fever. Back in Darwin, by late February, a paediatrician was saying that Robyn had the incurable CFS.

Sandra then discovered that Robyn's teacher had actually been suffering from CFS herself, and that four more teachers at the same school have since come down with the condition!