Patient support groups

See my previous report here, and  the letters and essays I wrote and how they relate to the development of chronic fatigue societies toward the end of my publications page here.

Banfield Research And Innovation

The courage to study medicine without the fear of disease or death.

The brains to solve medical mysteries which all the worlds best super computers combined couldn’t solve.

The perseverance to continue when others said it was too difficult or impossible to solve.

A.K.A. More courage than a pride of lions, more brains than a team of Einsteins, and more perseverance than a fully loaded Mac Truck travelling down a steep hill without it’s brakes on.

Patient support groups: Introduction

How to turn a problem into an opportunity – develop treatment methods for my own ailments, and then derive an income from the millions of doctors who charge a fee for using my methods to treat hundreds of millions of other patients with the same illnesses.

When I began studying my own health problems I was under the impression that it was unusual but I soon found the it was common. I didn’t think of joining a support group, but if I did, as far as I am aware, they did not exist at that time, and even if they did I would not have had the energy to attend and sit through their meetings.

However, about 9 years later I decided to set up such a group for the purposes of finding other people who wanted to co-operate with the study, but, while those who attended were keen to get information, they didn’t want to do research, so I stopped organising the meetings.

Nevertheless I was curious to see if anyone else ever set up such a group, and occasionally heard about them and attended, firstly to support and encourage them, and secondly to provide comments, but not to join their committees etc.

I had developed my own ways of studying the problem, and I preferred my methods.

I also wanted to learn how other people with chronic illness were treated and how they managed their symptoms so I occasionally attended meetings of people with arthritis, lupus, back pain, asthma, whiplash injury, R.S.I. and chemical toxicity, and many more.

I also spoke to many people with Agent Orange symptoms, Maralinga fallout ailments, silicon breast implant problems, anxiety disorders, depression,  or mental illness, intellectual disability, stomach and other types of ulcers, hiatus and inguirnal hernias, cancer, chemotherapy,  surgical complications, slipped discs, sports injuries, paraplegics, and quadraplegices, and many more.

I therefore have an extensive knowledge of people and how they respond to and manage their illness.

Some Details

I began studying my own health problems in 1975, when I had the general impression that my condition was unusual or rare, but soon found that it was very common. I therefore soon realised that if I could treat those ailments effectively that it would also be useful to other patients.

About seven years later I was invited to design and co-ordinate a research project  at the South Australian Institute for Fitness Research and Training to gain scientific information about the effect of  regular exercise on patients with chronic fatigue.

With the initial study of about 20 patients I was having some health problems related to the amount of reading and writing I had to do, and then when the project was successful and continued to about 60 I was getting more problems, so when I was asked to increase it to 200 to have a significant influence on world opinions I was not prepared to go though all that pain again, and it was my assessment, that having defined how to run the project successfully, that someone healthier than me would be able to do it by using the same principles.

I suppose another year went by when I decided to set up a self help group for patients with chronic fatigue (called the neurasthenia group) where my objective was to find other people who would be prepared to help me with the research, where some could study the neurology, or the adrenal, or other aspects, so that we could co-ordinate the information at monthly meetings.

At the first meeting about 30-40 people made enquiries and since then I have been telling the joke, that half the people who phones me said that they would be too tired to attend, and the other half fell asleep when I was talking to them.

There would have been more than 20 people at that meeting but when I asked if any of them were interested in the task of study, none were, so I decided that my time, of about 4 hours in organising and presenting the talk would be better spent doing the study on my own, and that getting the ideas published and presented to a larger audience of newspaper or journal readers would be a more efficient way of proceeding.

However, I also decided to set up a meeting specifically for those who had higher levels of education to see what would happen, and again, about 20-30 people attended, but they did not show any interest in the idea of combined study.

During the next year or two I also set up a meeting for people with chronic abdominal pain, where perhaps 10-20 people attended, but again they didn’t show any interest in studying the problem themselves, but I decided to arrange more meetings anyway. The audience was prepared to provide their own homes as venues for the meetings, and at those events they provided tea and cakes for the guests, and I would provide information and make suggestions about how to manage those problems.

However, I soon came to the conclusion that it would be more efficient for me to do the study on my own, and in my own way, at a very slow, but effective rate.

I was then listening to the radio when I heard about a new group called the Chronic Fatigue Society which was holding a meeting at a local medical centre, so I decided to attend.

When I walked through the doorway I could see a small crowd of people huddled together around a desk at the far corner of a large room, and as I got closer I would see that they were listening with great interest to a woman who was sitting in front of them.

She was discussing the possibility of a virus being the cause of the ailment, but of course I had developed the posture theory to explain the problem, and at that stage I thought that everyone was the same, and so didn’t agree with that idea.

I thought that I might mention my views, but it may have started an argument, and I may have ended up on some sort of committee, but I didn’t want that obligation. Nevertheless I thought that it was better to have two people trying to solve this problem, than just me on my own, so I left the building without saying anything.

I suppose another decade went by when I next heard  a radio report about a group called the chronic fatigue society  which was hold ing a meeting near the city, so I decided to attend.

There were probably more than 50 people there, and it was very well organised with a long table displaying pamphlets and a journal called “Talking Point”, and then the meeting proceeded in an orderly manner.

One of the things that made me curious was how chronic fatigue patients could run  such a meeting, and that if they could do that, then why weren’t they in business making a lot of money by running sales campains etc.

I continued to be curious about that when I attended some of their meetings, perhaps once a year, when I learned that the person in charge didn’t have chronic fatigue. He was a very healthy man whose daughter had the problem, and he was doing it for her benefit.

One one occasion I attended a meeting where there was a dispute about the problem being psychological or not, so I pointed out that Charles Darwin was a genius, so his supposed “neuroses” could not be due to mental weakness, and his father was a prominent doctor, so it could not be attributed to parental neglect etc.

However, the speaker took my words the wrong way, and accused me of defaming the character of Charles Darwin and chronic fatigue patients. That meeting, and the fact that I mentioned the possibility of a postural cause, where the group was promoting a viral cause, ultimately led to me being banned from the society for a couple of years.

Some time later I attended a meeting of about 150 people where there was a panel of 3 or more medical specialists on the podium where one discussed the neurology of the ailment, the other the psychological aspects, and another on immunology research. There was a slight hint of disagreement amongst the panel members relating to their different views, but when one mentioned the possiblity of viruses being the cause a member of the audience stood up and yelled at them for talking nonsense, and said that his problems were due to exposure to toxic chemicals.

As I looked about the hall I could see a small number of people in wheel chairs, and one brought a mattress to lay on the floor and listen to the talkers.

I was having some difficulty staying awake, but noticed several people on both sides and in the rows in front who were almost nodding off to sleep and struggling to keep their eyes open.

When the meeting finished I walked out to the entrance area and decided to stay there and watch for awhile. I then saw a man in the crowd who was about 6 foot tall, and had broad shoulders, a straight back, and the physique of a weightlifter.

In other words he was the exact opposite to the thin and stooped physique which I suggested was the cause. I approached him and asked why he was attending the meeting, and the explanation for the discrepancy became obvious. He didn’t actually have chronic fatigue himself, but was again, attending because his daughter had the problem.

It was meetings like that which led me to conclude that there must be more than one type of chronic fatigue, and more than one cause, so I became less argumentative with people who had different views to mine, and gave them more consideration in terms of my own research, reports, and conclusions.

During those years I was curious about how patients with other types of disease managed their ailments, so I attended a variety of support group meetings  for patients with arthritis, lupus, back pain, RSI, whiplash injury, chemical diseases, and asthma etc. I noticed an overlap in the type of problems which occur as the result of any illness, especially those which are poorly understood and poorly treated.

I may discuss more later.