In England, the U.K. Fibromyalgia Assn. is planning to conduct a survey about Fibromyalgia. At present, they are establishing the questions for the survey. We have been offered it when completed, and as it is some time since any survey was done (in Auckland only), I think it would be an appropriate time to consider this ourselves.

Having accurate data and statistics is vital to establish the frequency or severity of a problem. I am speaking to people and will keep you informed on a future survey for people in New Zealand.

In an email from Don, who is helping us keep updated on Fibro, OOS & CFS research, he says:

Hi Everyone!
Jeanne showed me the information on blood rheology printed in the June, 2001 "Positive Living". I did a "Copernic" search and came across a site which if you don't have, you will be interested in. Lots of references to Dr Les Simpson!

Have a good weekend. - from Don
Don is the husband of Jeanne, one of our Fibro members.
(Thanx Don, for this info. It is terrific and so helpful having you working on this! - Ed.)

Red blood cell shape analysis provides information, which falls into the field of blood rheology (haemorheology), which is a branch of medical science more than a century old. However, because it is not taught in medical schools, there is a large body of very relevant medical literature, which is unknown to physicians and therefore unutilized by the medical world.

On June 13, a paper titled "Red blood cell shape in women with fibromyalgia and the implications for capillary blood flow and tissue function," left Dunedin for a Canadian Medical Journal. This paper deals with 623 blood samples from people with FM residing in Canada, England and the USA. The samples were the outcome of speaking tours to FM groups in those countries, undertaken by resident N.Z. researcher, Dr Les Simpson. This published work shows problems of blood flow in people with fibromyalgia overseas and the work being done by Dr Simpson is important in establishing more knowledge in this field. The paper is considered to provide new and interesting information.

Unfortunately, this paper did not have the necessary information to show that the patients who took part had been diagnosed with Fibromyalgia, and thus it was rejected by mainstream journals, but it will be published by a small Canadian journal. We accept the FM paper is embargoed until it is published but when it is, we will bring you first-hand news of the results. We would need to ensure that volunteers in New Zealand were diagnosed by doctors and the classification of fibro was correct, before they took part in the study so that information was not voided as in the study he did with people overseas.

"Chronic Fatigue Syndrome and Fibromyalgia Information"
Read a radio interview with Dr Les Simpson, recorded for CFS with Dr Roger G. Mazlen in the United States in 1999.

Volunteers are wanted to take part in a NEW New Zealand study in 2002 on 'Red Blood Cell shape in people diagnosed with Fibromyalgia in New Zealand.'
Volunteers, please email your contact details to Jacqui.

Through courtesy of Miranda, several studies took place in the Auckland Region, with people who have Fibromyalgia, OOS/RSI and all forms of Arthritis to ascertain N.Z. results for using Tahitian Noni Juice. Overseas results with people using Noni Juice have been promising for Fibromyalgia and Arthritic problems.

Each study was for a brief period of one month only, during which time participants were asked to attend weekly and report on any progress. During this period participants were supplied, completely free of charge, with the best quality Tahitian Noni Juice by Miranda to enable the studies to take place.

The first studies took place in May, followed by several more during July 2001. There were three studies done in July with groups drawn from all over Auckland and they were based in Papatoetoe, Panmure and Glenfield. People could attend in whichever area suited them best for travel. There were no other requirements, no charges and "no catches."

Today (20 October 2000), I was speaking with Anaia, who lead the greater part of the Noni studies. She said it will not be long before the results are finalised and she will pass them on to us. She did add, the trials with a special group who had chronic fatigue looked very promising at this stage. Watch this space!

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This treatment is still experimental, and not approved by Medicine in general at present, but some people, under the close guidance of their General Practitioner, have been using Guai with good results. Many of you may remember a letter from Amber in the May 2000 newsletter, and more recently from Zanne, speaking about their use of Guaifenesin for treating Fibromyalgia.

A letter from Fiona P. of Wellington, who has been taking Guai since May 2000.

Queries about Guaifenesin Use. Megan has thoroughly researched Guaifenesin and spoken to Dr St Amand in the United States. She has been using Guai for five years herself since 1998 and is the most experienced Guaifenesin user in New Zealand. Megan is in contact with experienced long-term users of Guaifenesin internationally and is our Senior Mentor for Guai users at 'Positive Living'.
She is willing to help people with queries about using Guaifenesin.   Email Megan
Look forward to some articles on everyday questions that Megan will be writing for us.

New Source for Guaifenesin. An excellent source of high quality Guaifenesin is now being compounded in New Zealand. A survey amongst users ascertained viability for a reputable, local manufacturing pharmacist to compound Guai for us, at prices that were acceptable to our long-term users and extremly competitive to overseas prices. Megan established the parameters in conjunction with Dr R. Paul St Amand, experienced users and Guai-support International. We supply Guafenesin in 300mg & 600mg lactose-free, gelatin (sal-free) capsules which give immediate, then sustained action. Our service began in June 2002.

Order directly through Jacqui at 'Positive Living.' This direct method for distribution of Guaifenesin avoids advertising and extra overhead costs. Our bulk buying reduces costs to you, the consumer. Please support us to keep supplies being made in New Zealand.

I would very much like to be able to run a local study to examine the "Use of Guaifenesin in New Zealand", and have been active to that end. Understanding it is still experimental, if we could have the people who are using it now, under the watchful eye of a person prepared to document progress of the group, I think the knowledge gained could be useful to others. Anecdotal evidence does not wash with many professionals.

If there are people in New Zealand with fibro, who are already taking Guai and/or who would like to be part of a study on Guaifenesin, could they please write to me at "Positive Living" with contact details especially name, phone number, email (if available) and postal address, please? This study will take some time to set up and knowing what interest is out there, would be helpful in whether it should be pursued or not.

For all information we have on Guaifenesin read our website page click here, including these recent papers written by Professor Robert Bennett M.D. of the Dept of Medicine at Oregon State University, Paper 1 on the Study itself, and Paper 2, in which he concluded by saying: "There is no doubt that many fibromyalgia patients have been helped by Dr. St. Amand and one can only speculate as to why they improved."

I am looking for a Researcher, General Practitioner or Specialist who would be prepared to overview a study of Guaifenesin users in New Zealand. In this way we would have local knowledge of their progress. If any of you know of a doctor who would help in this, or someone who could undertake a study, please contact me.

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