CFS Peer reviews

Introduction

The chronic fatigue and related symptoms which I had in 1975 is now called the Chronic Fatigue Syndrome, and the treatment method which I invented in 1976, and scientifically proved effective in a 1982, has since been given the label of PACING. Someone else gave it that label, but it is  my method of exercising at the patients own pace and staying within their limits. It is the most widely used in 2014, and has replaced the advice which was in general use in 1975, and previously, and  which I had been given, to ignore my symptoms and run faster and faster. See the  1982 research paper, now in the British Medial Journal here. Max Banfield

See a University of South Australia request for CFS exercise advice from patients via CFS society email 8-9-15 here

See also a Cochrane review of exercise therapy for chronic fatigue syndrome published in the European Journal of Physical and Rehabilitation Medicine (Europa Mediicophysical) on September 16th, 2015 here.

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Tom Kindlon is a prominent advocate of chronic fatigue syndrome patients who has had several research papers published particularly on the harmful effects of exercise studies and programs which have been used as treatments. His main objective is to prevent harm to patients in future.

One of the first articles of his which I read was entitled “Reporting of Harms Associated with GET and CBT in ME/CFS”, and it  was published  in the ME/CFS  Australian (SA),  journal called Talking Point 2013, Issue 1 (Jan-March), pages 8-13.

It was an extract from the Bulletin of the IACFS/ME journal of the International Association for CFS/ME 2011 , 19(2) pages 59-111. in which he presents many graphs, one of which can be seen below.

Pic for GET harm by supplied by kiidlon 1-3-14 on twitter

He found that 51.24% of patients who participated in Graded Exercise Therapy (GET) programs were worse off as a result of training, as were 19.91% of Cognitive Behavioural Therapy (CBT) patients, but only 2.58% of patients involved in Pacing programs had been harmed by the treatment.

I would like to point out that in 1975, when I was 25  years old I had many health problems, including chronic fatigue, which my doctors and specialists were unable to explain or treat effectively so I decided to study those ailments and develop my own treatments.

I was not aware then that nobody in the world knew how to treat those ailments effectively or reliably and that exercise programs had been tried but were universally unsuccessful, and virtually abandoned because the patients, as was said, “could not or would not train” for the 12 weeks required to get useful results in research projects.

That was mainly because of the prevailing attitude that the only way to get them back to normal health was to tell them to ignore their symptoms and continue to walk or jog at a gradually increasing rate each week until they made a complete recovery.

News StudyLiftsFitnessTheNewsAug1982However, as I knew almost nothing about medicine at that time, I just decided for myself that it might be a good idea to join an exercise class with the same objective. However, when I had problems at the higher level, and an instructor told me to ignore my symptoms, I found it impossible, so rather than continue and get worse, or drop out of the course and not improve, I decided to slow down and run at a rate that was practical and possible.

I continued for about ten months during which time I was able to increase my training from twice to six or seven times per week, and then, on one occasion, I injured my knee and had to stop.

I was training at a medically based fitness research institute and was provided with scientifically reliable data on my aerobic capacity and found that my fitness increased in the first 12 weeks and then remained the same for the remaining months despite increasing my pace and frequency of training, which indicated that I had a limit to my aerobic capacity which was below normal, and that I could continue if I trained within my relative limit, and stayed below the levels which caused problems. I also applied that general principle to all of my other more general activities etc.

Seven years later I had a discussion with  Tony Sedgewick, the head of that Institute, and he invited me to design a training program for other people with chronic fatigue.

I had developed a method for myself in 1976 which was practical and safe and useful, and defined the research project to make it safe and effective for everyone else, and was successful.

Those patients were asked to train at their own pace, and if they had any problems to slow down or drop out if they wished. Consequently some improved, and some continued for 12 weeks, and then 24 weeks or more, and none reported having any significant problems.

The success was widely reported in local and interstate newspapers, and became the first successful and reliable method which could be easily peer-reviewed and verified by anyone who wished to do so.

Since then other people have given that method the label of PACING, and as can be seen in the Tom Kindlon report, it is still regarded as the best method available in the world today, in 2014.

I have sent several articles to the British Medial Journal in the past few months, several of which have been published. One  of them, published on 8-1-2014,  was about my 1982/3 research project which is included as an attachment here.

M.B.

The Peer Review Process

One of the advantages I had in studying my own health is that I could determine exactly what the problems were and exactly what to do about them.

Unfortunately, while that is the sensible thing to do, when no-one else can do it for you,  you nevertheless have to scientifically prove it, otherwise all sorts of well meaning or unscrupulous individuals will be skeptical or accuse you of being a liar etc.

The process of studying medical problems usually requires a person to have medical qualifications, and proving anything usually involves the use of scientific laboratory equipment, and then having the results “peer reviewed”.

Peer review essentially means that you are required to identify a problem, describe the method of solving it, and having other people use the same method to solve the same problem, so that the success can be confirmed independently of the person who did is first.

When that is confirmed the veracity of the discovery is accepted as a proven peer -reviewed scientific fact.

The Peer Reviews of my research

When I was 19 I was offered 3 scholarships to study leadership in a course called Group Work and the SA institute of technology, and later at the age of 25 I had many health problems which were not responding to treatment. It became obvious that my doctors and specialists couldn’t solve the problems so I decided to study them myself.

When I enrolled in a fitness course at a research institute in 1976 I didn’t know it’s structure but with the benefit of hindsight it had a person in charge, two research cardiologists, their lab assistants, administrative staff, and secretary. The person in charge was Tony Sedgewick who had his own room for study and meetings, and there was a room full of scientific laboratory equipment, and a storage room for thousands of patient files, and a reception area etc.

It also had three venues. One in North Adelaide, another at Payneham, and another at the Magill College of Advanced Education.

There were several studies being conducted about the effects of exercise on such things as asthma, arthrititis, obesity, and smoking etc.

When I started there was no specific class for people with fatigue, so I was placed in a general group for any member of the public.

When I commenced training, and was seen struggling along the track, I was told to ignore my symptoms, think positive, and try to keep up with everyone else it,.

However, it became very obvious to me that no-one in that organisation understood my ailment .

It became necessary for me to determine my own type and level of exercise, otherwise I simply would not have been able to continue, which I did for about 10 months.

I did read some medical literature, but not much in that early stage, because most of my methods of treatment came from personal experience.

However, a few years later, when I read that international researchers were not able to get other patients to train for 12 weeks, I knew that one of them, Paul Dudley White, was one of the best in the world, and if he couldn’t solve that problem then my method had a great value to medical science.

About 2 years later I met the head of the Institute, and within a half hour he knew that I could solve the problem, and when his two cardiologists were busy he asked me to organise a research project to test it and see if it was equally effective with other patients.

When I discussed the fact that I didn’t have medical qualifications he said it didn’t matter, because I could put together a committee of people who did, and they could verify and approve the value of the project .

I then designed a program based on my own success in 1976, and subsequent experience, and the 12 week program proceeded in a routine manner, and was repeated and reproven as effective, safe, and reliable, and it was the first time that anyone in the world had been able to do that, and could be just as easily repeated by anyone who chose to use the same method in future.

I then left the program, and from time to time returned to research, but in my own way, and was not aware of anyone using that method.

However, in 2007 I became aware that some people were copying me, and in 2013 it became obvious so I did some checking.

I found that within a few years of  me developing that reliable method between 1976 and 1983, that millions of dollars in funding was provided to other researchers to study the effects of exercise on chronic fatigue, and that thousands of studies have been conducted and reported since, and that doctors, specialists, clinics, and hospitals are now using that method as a treatment.

When I looked at the general reports of those studies I could see that they were the same or slight variations of my program design.

In other words the previous method of telling people to ignore their symptoms and  run faster and faster each week until they recovered, had been replaced by run at your own pace, progress slowly, and stay within your limits.

The Current Problems

I also noted that nobody mentioned my name as the author of that method, and other people have been given the credit, or taken it themselves.

Nevertheless, in the recent, most modern 5 million dollar, 5 year PACE trial more than 50% of patients have reported that they are worse off after the training than before they started, and there have been many protests and demands for such training to be banned.

I have had 30 more years of experience since 1982, and I know exactly what is going wrong and exactly what to do about it but there is no incentive for me to do anything about it while other people are getting all of the money and credit.

 

 

 

 

 

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