Dear CFIDS friends,

Thank-you very much for the positive feedback that you have given me about the last newsletter It seems to have struck a chord with a lot of you. I don't know if it was humanising the patients, or letting you in to my fantasies that was so pleasing.

About us

We are both retired primary school teachers. Our life seems to be devoted to the community. I have been an office bearer in the golf club or bowls club, or both, for nearly thirty years. Eileen has too many hats to mention. She has been secretary of the museum for twenty years. She is a very keen ornithologist who convened the 'Friends of Chiltern Park'. It is now a National Park.

I loved going to work every day for thirty two years. I was a head teacher in rural schools for twenty-seven years. There I learned how important the mothers thought a weekly newsletter was. How I produce this newsletter now is a far cry from typing on a waxed stencil and then running off copies with that smelly, messy spirit. You could hardly get cleaned up before the next issue was due. I must share with you one of my most vivid memories. I was at Tyers, near Traralgon, in charge of seventy-six children with ONE assistant. The stress made my assistant often take a day's sick
leave. I was then left handling the 76 children , in two rooms, with monitors. I had to clean the school too, and I mowed the grounds with my own mower, using petrol that I paid for. Thank goodness things have changed a little since then.
How I saw our aims

When I started this task I was pretty clear as to what I hoped to do. First the protocol had to become known. Secondly the cost had to be brought down so that it was accessible to all, not just those that could pay for it. Thirdly the procedure had to be approved for use in Australia. In my wildest dreams I could not imagine that we could have gone so far down the path to achieving these aims. 'My' last patient should complete her maintenance programme about next May. I see my commitment as coming to an end then. We'll just have to see what the situation is when we reach that point.

What's in it for you ?

A small percentage of enquirers can't wait to see what I am getting out of it. Unfortunately some people find it hard to believe that others do things for altruistic or humanitarian reasons. We are in the fortunate position that we do not have to worry about money. I am doing it because I truly believe that Nash has 'The Gift of Life' Already he has given Robyn a far better quality of life than she was going to have, left lying in a bed waiting for 'a spontaneous recovery ' The picture at the head of the first column is Robyn when she was down with us at Christmas. She left her bed for an hour or so to dress up as a fairy. As you all know, one of the major troubles with CFS is that sufferers often look so well.
A serious question

One wise lady I have spoken to has had CFS for thirty-seven years. Naturally she has seen everything. She asked me what I was going to do when a patient didn't recover, and then blamed me. I said that I considered that I was distributing information. What people did with that was their concern. No doctor in the world cures all his patients. If only one success came from my efforts I would consider them well justified. I have since learned that Nash possibly does have a hundred percent rate of cure against PURE CFS. His problem is the fact that he can't cure cancer and that Lyme disease must be treated with antibiotics, which are heavily implicated in the development of CFS.

In the first month or so of Robyn's treatment all we seemed to talk about was the possibility that SHE would be in the two percent that didn't respond to the protocol. One day Sandra rang to say that Robyn had got out of bed and said, "Mum, I'm bored. What can I do ?" We knew then that she had turned the corner, and we haven't even thought of failure again.

Phillip

Julie has given me a lot of material from her diary. As at the time of writing (20-10-97) Phillip has bought a dog, goes for a walk every day to get some muscle tone, works a forty hour week, thinks that life is grand and SORRY MARTIN ! has played four holes of golf *

On the 24th of May she wrote, "Our 26 old son had been totally debilitated for two years. We were a family in real despair with nothing to look forward to at all. Daily lives revolved around his well being and thoughts of ever seeing Phillip fit and well were slipping away.' We will never really know how lucky Phillip was that he was also being cared for by an alternative medical practitioner. In Julie's opinion he was 'GOD'
The practitioner has the skill to be able to observe the protocol weaving its magic in repairing the body. When Phillip had the 'interleukin' crisis after about six weeks he was ready to throw the protocol down the toilet. Luckily Phillip was persuaded to see the consultant. Nash is very grateful for the support that he gave to enable Phillip in getting through this rough patch.Julie and I now always tell prospective patients that this is a slow acting, long term solution to CFS, and that there is likely to be a bumpy road ahead. It is essential that we build up a network that can patients the support that they receive from Nash when they live in South Africa.

Yvonne

is patient number 5 who lives in Sydney. She has many similarities with Janet, one of our new patients.

Janet

Our comedian, has joined the club. In spite of feeling dreadful she has won a painting competition. The picture will be on the cover of a book being published about the Dandenong bushfires last year. Congratulations Janet ! Here is a cartoon that she drew for 'Emerge', the Melbourne CFS
society's magazine. She tells me that her book of cartoons, "So this is CFS !" is available from CFS/ME Vic. Inc., 23 Livingstone.

How about a round of aerobics and then a swim ?

Janet tells me that she is not the most patient patient that we could have. Here she is waiting for her protocol.

Of all people, she had to be the one whose protocol was detained, and opened by customs

Fiona - I have had to re-write this paragraph because Fiona has written a book in protest against the doctors who say the disease is in the mind. It is called "CFS is REAL". She had a publisher too, until the owner became sick and closed the business. Now of course 'The Researchers' have declared that CFS is a REAL disease. It is up to everyone to saturate doctors with this information. Fiona was able to tell me that the South African patients in the group assessed by Dr. Smith had spent an average of AUS$12,080 on treatment. The quote was that they had spent 40,000 Rand.
Michelle Is about to undertake the protocol. She comes from Northern N.S.W. A prospective patient In Perth is thinking about really giving us a wide spread of patients in Australia.

Clever enzymes

Enzymes are the agents that make it possible for the cells to get a food supply by controlled oxidation. If they weren't able to do this the cell would be destroyed. Enzymes have their efficiency severely impaired by mercury, pesticides, or industrial chemicals. This means that the first step in therapy is to remove the patient from excessive exposure to oxidants.

Nash quite spoilt my exercise programme. I told him that I went for a swim in salt water afterwards, and then lounged in a chlorine spa. He told me to avoid the spa like the plague. He said that chlorine was one of the greatest sources of free radicals that you could find.

An update on Max

I am told that Max is continuing on the upward path, and that he is now back working full time. This is his response to Nash asking him to compare his progress with his wife Alice's. "Regarding comparison of my wife's response to the "China cure" and my response to your CFIDS recovery protocol, it's a bit like comparing an apple with an orange but here goes: - Alice is feeling better at present than at any other time since the onset of her condition in mid '94. I am not yet feeling as well as I did in early '96 (the onset of my condition was in early '95). This looks like a vote for the China cure, however, when we started the treatments, she was closer to her previous best than I was, so it's hard to be sure. - I am currently able to work almost full-time, Alice is currently able to contemplate the possibility of attempting a return to work some time in the future. This looks like a vote for your protocol, however, at my worst I was able to work about an hour per day, at Alice's worst she was unable even to talk to a friend on the 'phone for more than 5 minutes per day, so, again, it's hard to be sure. What we are sure of is that we are both improving more quickly at present than at any other time since the onset of our conditions. We will never know whether Alice would have fared better on your protocol, nor whether I would have fared better in China. Even if we switched places now we would be starting at different stages of recovery than we were at 3 months ago. Even if we are unfortunate enough to relapse in future to where we were 3 months ago, then try swapping treatments, other factors (such as age) would differ. Perhaps, in time, sufficient statistics will have been collected to make comparison possible. (Alice is only the 2nd person we know of to undertake the China treatment. The other had been suffering CFS symptoms for 8 years, was cured within 4 weeks, got worse during those weeks before she got better, has not suffered a relapse.)

I mustn't forget NASH !

I have been amazed how little the testimonials mean to Australians. I don't know whether it is a curious aspect of our character, but it seems to be fairly universal that a foreign testimonial doesn't mean a thing. On top of that people are very reticent about talking to him because of their previous bad experiences with doctors. Everyone wants to talk to somebody who has been cured. Unfortunately nobody has even finished the treatment yet. I can tell you that Nash was first in the queue when compassion was handed out. His choice of career is an indication of this. He must live on an extraordinary high with the buzz that he gets from the people who are always thanking him for giving them a new life. He works up to 22 hours a day.( I have evidence of this) He has been on antioxidants since he was sixteen.

We find that we have a lot in common. We seem to have the same sort of whimsical sense of humour. He was amazed by the heat, the pollution, and the crowds in central London just before midnight. He said that there was certainly a 'greenhouse effect' in operation. Mrs Webber is apparently a great enthusiast for the protocol. She led the conference in London studying the Petrovic treatment. The presence of Emmy-lou and Gary Winn was an inspiration for the participants.

Martin's latest

He has been asked by M.E. News in N.S.W. to write a revue of the patients in Australia. When you read Phillip's own account of his treatment you realise how deceptive a report of this type may be if given at a low stage of the recovery.

Christmas is coming

I seem to have been writing this newsletter 'for ever' it has turned out to be more like a book. I think that I will try to publish one more before the end of the year. I will aim to have it out in the second week of December. If we have any more 'Janet's' in our midst I would love to publish whatever you have to say, even if it is just a Christmas message.

My e-mail address is rcollins@albury.net.au
My phone number is
03-5726-1484

My 24 hr fax is
03-5726-1148 (in Australia)
which is +61-3-5726-1148 (International)

Peace and health from Roy and Eileen