Dear CFIDS friends,

I felt as if I was producing a newspaper last month, cramming six pages into each envelope. I hope that you think that you got good value for the forty-five cents postage.

Our patient tally is nine.The new ninth patient is a friend of Martin's. The last of the original enquiries started the protocol this week. The original ninth person withdrew at the last moment.

Things have been going so well that I had been seriously thinking of closing down my activities. Robyn, patient number two, has had a bad bout with Ross River Fever, but she is now saving for a cover for her trampoline ! The third patient, Phillip, has said that, "CFS is behind me now." Others have the symptoms rapidly fading.

Phillip's. fiancee was the first person that we know of to see my letter. It was at 7.00 a.m. on May the 22nd. She told Phillip's mother. Julie then phoned me at 7.55 a.m. and said "You don't mean to tell me that someone can cure CFS ? We would sell our house and pay $100,000 if we thought that CFS could be cure

I still can't quite believe that Phillip and his fiancee are to be married this weekend.

I am sure that you join me in wishing them many years of health and happiness.

Nash's patients are asked to assess forty-one symptoms on a 0 to 5 point scale (5 being the worst) Apparently Emmylou still reports to him ( at least she did). Last time she said that her report was 41 noughts, and that she felt 99% fit.

I have gone through a frustrating period where I didn't have a faxing facility. It took me over three weeks to get newsletter number three to the Isle of Wight. Now that I have the faxing capability restored I was able to send Emmylou a draft of this one in three minutes !

As Martin has declared that he is well I would like to thank him on our behalf for the tremendous support that he gave the patients trying to decide whether to take the gamble of going on to the protocol. In the third week of treatment he said, "I'm not game to say that I'm cured, but I could run in the Boston Marathon."

As you saw from his letter, he will be informing seven hundred people, in stages, of his recovery .If all goes to plan the first enquiries will be directed to me about now. This has really made me review my situation. My intention was to provide support, and a means of communication for the original people that contacted me after seeing my letter.

I obviously can't keep on providing this support for a large number of people. I will therefore institute a system of charges that I hope will cover my costs. In this small town it costs $2.00 to fax a page and I notice that photocopying has risen to 25cents a page in some places.

Goodness knows what my phone bill is going to look like this time (It was $500 against $200 usually) , but I certainly will not be able to return calls of new enquirers.

These charges will be:-

1:- $2.00 for two or three pages of essential information about the Petrovic Protocol.

2:- $10.00 for Nash's description of the cure, accompanying graphs, Professor Kilroe-Smith's critical assessment, the four-page patient information sheet and a few testimonials delivered in a $4.00 overnight bag.

3:- $25.00 to set up an account in which I will offer to communicate with Nash on the patient's behalf, and ring back if necessary. The account to be topped up as the money is expended.

4:- $15.00 for twelve monthly newsletters.

5:- Price by arrangement for faxed copies, and E-mail communication.

I am sixty-eight, and I am only in this position through extraordinary circumstances. I don't know how long I will be able to continue. Perhaps a young person will recover, and be able to take over this function as Emmylou has in the U.K.

I'm sure that Nash would prefer a group like the Sydney CFS support group to carry out the job as they are obviously in an ideal position to do it. It is unfortunate that at this time they seem to want to deny patients access to his cure.

ON THE AVERAGE

Professor Kilroe-Smith said in his critical assessment of the Petrovic Protocol that the fifty-eight patients had been sick for an average of nine years, and they recovered in an average of nine weeks.

This means that for every Judy Rocha who knew that she had been cured in ten hours there must be a patient who is going to take four months or more to get better.

After being sick for nine years another four months is going to seem like an eternity. This feeling will be exaggerated if your body seems to be telling you that you are worse than before.

This is the 'interleukin effect' and it is actually a good sign. It is telling you that your body is recovering. We have two relatives of patients who have experienced this effect . They are willing to offer support to anyone who may be disappointed with their progress. I will give the numbers on request. My number is 03-5726-1484. As time passes this support group will obviously grow.

Nash has just sent me a testimonial from Hilary Gerson who knows all about the long wait for the treatment to take effect. This is part of her letter. It is dated 30th July, 1997.(0011-27-11-453-3674)

"My family saw what was happening to me so they suggested that I see a psychiatrist.A number of blood tests were done,but no physical illnesses were found.I was then diagnosed as having depression and anxiety and was prescribed anti-depressants and anxiolytics.
These drugs seemed to work for a while,but my symptoms soon reappeared and I was then told to see a psychologist and go on a higher dose of the drug.This failed to get the necessary results and so I left this doctor.I subsequently saw three other psychiatrists who all put me onto anti-depressants, but they had no effect.The last doctor I saw suggested shock therapy and lithium.This seemed to make me worse and I was becoming extremely despondent.

A friend suggested I see you.I started your treatment and I must admit it was heavy going in the beginning.There were so many pills to swallow and I did not get the desired effects initially.I was ready to give up at times.After the first two months' programme,I began the maintenance programme and that was when I began to feel the benefits.My physical symptoms improved first and then the depression and anxiety slowly disappeared.

I would like to express my sincere thanks to you for your confidence in my recovery and your constant encouragement to carry on when I was ready to give up.I will continue to take my vitamins as I can see the great benefits they have. You gave me back my life and I will always be extremely grateful for that."

My Interpretation

I believe that another factor is at work in the previous paragraph. You will have noted a constant refrain in all the testimonials. Everybody thanked Nash for 'his optimism, his constant encouragement, enthusiasm, re-inforcement etc.' throughout the treatment.

I think that distance accentuates the feeling that the interleukins induce. That is why it is so important to have the opportunity to talk to someone locally who has 'been there and done that'.

Supporters

It seems to me that having CFS and being a comedian are mutually exclusive conditions. However this isn't true. A lady who has had the condition for ten years has contacted me. She sent me a copy of a book of cartoons called "So this is CFS ?". She has published this at her own expense, and donated the proceeds from the sale to her local CFS society. She obviously feels very strongly about helping people with the condition, and finding a cure for it.

Through her daughter she actually found Nash's website last year but she found that it was 'in the too hard basket' at that time

She is at present taking a year long cure. She said that if the cure didn't work, and all our patients recovered, she would be first in line for the protocol in the new year.

Another lady who feels the same, but is unable to afford Nash's cure, has sent me a donation. I am very touched by her thoughtfulness. If we ever formally register the association I will regard her as our number one ticket holder.

Recognition

Nash was telling me that medical funds in South Africa are beginning to pay benefits on the cost of treatment. It will be interesting to find out what percentage benefit they pay. How many years, eons, before Australia will follow suit ?

My eyes and ears

Allow me to introduce you to Bernard. He comes up with all sorts of interesting information. A couple of weeks ago he alerted me to a 'Cutting Edge' programme on SBS. It was an absolutely horrifying story of what farmers (Particularly Americans) are doing to the food chain. It concentrated on what is injected into animals to make them grow bigger, produce more milk etc.

European scientists were shown trying to develop techniques to find out what the Americans were doing. Particularly frightening was the item where the scientist showed what she had discovered deep in the muscle where the Americans had hoped it wouldn't be found. She named two or three chemicals. She then showed the traces of something that they hadn't identified yet. She finished by saying that she hoped any woman eating it realised that it had been injected with oral contraceptive !

There is no wonder that you shouldn't eat red meat while taking the protocol. (Or at all )

Bernard provided the Esther Rantzen article. Apparently the ABC has the TV programme for its "Inside Story" series. It has been scheduled at least three times, but each time it has been withdrawn. Bernard has been met with a wall of silence when he tried to find out why.

It is interesting to suggest reasons why they have done this. One that springs to mind is that they might think that it would produce panic in the community. Another may be that an authority does not believe that M.E. is a brain disorder as the programme would have you believe
Doing my homework
I had to do this because Nash might have in mind an examination for me at the end of the year. Each time I read the articles I understand more. I wish that I hadn't finished physics and chemistry so early in secondary school.

One of the truest statements I have ever read says,"Free radicals have such a short half life (lasting only one-millionth to one-billionth of a second), that it is very difficult to measure them directly."

Humans and a few other mammals are the only animals that can't produce their own Vitamin C. We lack only one enzyme which would allow us to convert glucose to vitamin C.

Enymes actually have "on/off" switches which allow cells to create their own antioxidants at the exact moment that they need them.

ABC FM

I am a great fan of Margaret Throsby's daily interview programme at ten in the morning. Shortly before I became aware of ME/CFS I heard her interview a medical historian, Dr. James Leavesley.

They talked about Pasteur. He used a rabies serum for the first time to save a shepherd boy that spread his arms against a rabid wolf to protect other shepherd friends. There is a statue of him outside the Pasteur Institute in Paris.

Margaret said, "Surely that was a case where he must have immediately been accepted, and applauded by the medical community."

The doctor replied, "Margaret, it is axiomatic that the medical profession will resist all advances in medicine !"

It is rather frustrating having to go through this rejection at first hand.
Other Health Matters
As I have a little space left, I thought that I might mention two other health matters that have come to my attention. Firstly, I was saddened by the news item about Raelene Boyle. She has been forced to sell one of her medals because of the prohibitive cost of cancer drugs. Apparently she has breast cancer.

While having a cappucino the other day Eileen was reading July's "Australian Woman's Weekly".

There was a long story about a young lady going overseas to be cured of a heroin addiction. Apparently the long withdrawal period is compressed into an eight hour period while the patient is unconscious. I think it was an opiate starting with Nat.. that was used.

I am sure that you know what the official response to the treatment was.

WHAT LUXURY !

I actually have a couple of lines free after I bid you farewell for this month.

Peace and Health from Roy and Eileen.