CFS and exercise

Who gets the credit for research?

I developed the modern method of treating the chronic fatigue syndrome under extremely difficult circumstances when I had to take a lot of risks and made a lot of mistakes before I got it right. (because I knew that nobody else would go to all that trouble).

However since then healthy professionals have become rich and famous for just using it to treat 300 million other patients in exchange for fees, but they haven’t paid me a cent, and never mention my name because they want the status and prestige that goes with such discoveries for themselves, and they want to hide the mistaken methods of the past. (which are now being described as methods from the darker days of medicine).

For example some have become serial copyright thieves by stealing almost everything I wrote about CFS to gain multi-million dollar research grants, medical prizes, and promotions, and some specialists charge $1000 per hour for using it to treat their patients, and some have set up clinics where they specialise in treating CFS and derive the vast majority of their income from using my methods.

Some of them have argued that it is not just an exercise method developed by a dumb sportsman, but is a very complex energy management regime, but I actually developed that as well and they haven’t been able to improve it.

I therefore don’t publish my discoveries anymore because those who use my methods to treat patients get all the money, the patients get all the health benefits, and I get nothing.

However, if I was paid, I could describe better methods, and some of the important details which I haven’t  mentioned in the past, and which are essential to know in order to treat the ailment successfully.

The origin of the modern CFS exercise guidelines

Some people don’t want the public to know that a patient developed the modern methods of treating chronic fatigue with exercise, because it proves that some very popular medical theories of the past were wrong.

It was widely accepted that the patients were timid and fearful children whose parents had protected from the dangers of physical activity by not allowing them to play sport, so they became adults who were unfit, and wouldn’t participate in fitness training programs because of their fear of exercise.

However, as a teenager I played sport every day, and when I developed chronic fatigue at by the age of 25 I decided to treat it by joining a class at the South Australian Institute for Fitness Research and Training. I was unable to keep up the pace of the others in the group so I made some changes and kept training at a lower level, and I did gain some improvement to my general health.

About seven years later, in 1982, the head of that organisation asked me to design a program which would enable other patients with that ailment to train. I produced a set of guidelines and the success of the project was reported in local and interstate newspapers between 1982-3.

It has become evident to me that those guidelines have been used by many researchers since, and have become the major topic of research and discussion thirty years later, in 2013.

You may not know my name, but they are my guidelines. See more here, and my guidelines here.

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In 1982 Tony Sedgewick, the head of the South Australian Institute for Fitness Research and Training, asked me to design and organise a project that would solve an international research problem. Namely that it was not possible to get reliable scientific information on the relationship between chronic fatigue and exercise because the patients “would not or could not” train for the length of time required. I eventually agreed and produced a set of guidelines, which were based on my own experience, and the project began. 65 people made enquiries and about 25 had their aerobic capacity tested, 9 completed 12 weeks training, and 5 completed 24 weeks or more. See more details here.

The symptoms which I was studying were similar to those of heart disease, and had many labels which included “Anxiety Neurosis”. A photo copy of the article where I found out about that research problem can be seen above right. It is from abook called “The Heart”, 3rd edition, by J.W. Hurst et al, p.1354, published by McGraw Hill in 1974. The article mentions that Cohen and his associates were unsuccessful in getting patients to train. One of them his colleagues was Harvard professor emeritus Paul Dudley White who had been the world’s top authority on the subject for many decades.

None of the world’s top researchers knew why patients were dropping out of exercise programs or having recurring problems with severe fatigue until I discovered the reasons, and then described, and scientifically proved them between 1976 and 1983. Unfortunately there appear to be a lot of ungrateful people who are not willing to acknowledge that I made those discoveries, and some seem quite happy to copy me, and take the credit, for what I did, and nobody else even suspected. In fact, my methods have to be copied because it would be impossible to do the exercise properly or safely otherwise.

It may relate to the fact that doctors are supposed to be the wise educated men who are helping uneducated or mentally weak patients, and yet I, as a patient, solved the problem, which alters the stereotype.

Five years after my study was completed, and I had scientifically proven that chronic fatigue was a real physical condition in 1983, the name of the chronic fatigue syndrome was included by the US Centers for Disease Control and Prevention (CDC) in 1988.

The copies are not as good as the original

In a recent article in SA ME/CFS societies journal Talking Point, Issue 1,  2013, Tom Kindlon provides a chart which shows that 51.24% of graded exercise therapy patients reported harmful effects, 19.91% of Cognitive Behaviour Therapy patients had worse problems after treatment, and 2.5% had problems after  using Pacing methods.

When I discussed my methods with the head of a research institute in 1982, they were based on my own personal experience, and I made recommendations on how to avoid problems, and I advised the instructor to let me know if there were any to let me know and I would tell him what to do.  None of the volunteers reported problems, so I didn’t have to do anything, but when I eventually phoned the instructor, after 24 weeks of training twice per week, our discussion revealed that everything I predicted had occurred precisely, without any problems.

From what I have read of those modern procedures, they are obvious attempts to copy mine, in slightly different ways.

However there were at least three important facts that I took into account that I have never published, and that modern researchers can’t copy, which accounts for why they get almost a 50% harm rate.

They were obvious to me, because I did the experiments on myself  7 years earlier, and I know exactly what the problems are.

Introduction

In 1975 the prevailing medical opinion was that chronic fatigue was a mental illness, and treatment was almost exclusively psychotherapy. However, I had that problem and decided to treat it by joining an exercise class. Fortunately it was run by a medical research institute, but the advice I received was that there was nothing physically wrong with me, and that my symptoms were just due to the fear of exercise and that I should ignore them and go faster, and faster, and faster, and that I would eventually get better.

When I followed that advice the symptoms were quite extreme, and I knew that anyone else who had such problems would give up and leave, but I had a lot of previous experience with sport, and had been a gymnastics leader where I sometimes gave advice to adjust exercise levels and types to individuals who had various health problems such as excessive body weight, or asthma.

I therefore decided to modify the exercise program to suit my own ailment.

Within a year I was able to establish and scientifically prove that I had physical limitations, and that if I exceeded them I would get the type of symptoms which made continuation impossible, and if I stayed within them, I could very gradually improve my fitness level, and my general health.

However, during the next few years I experienced severe fatigue where I was unable to do even the slightest exercise for months at a time, and that happened repeatedly until I determined that I also had lifestyle limitations, and that I would need to adjust my general activities to prevent those periods of extreme fatigue from recurring, and I refined those methods until they were reliable.

In 1982, Tony Sedgewick,  the head of the research institute where I did my initial exercise training, invited me to design a program to help other other patients, and improve the scientific understanding of the problem.

Within a year I was able to scientifically prove that those methods were correct and effective when applied according to my instructions which related to each individuals specific ability.

I knew that many people would be tempted to copy those ideas and claim them to be their own, so I prepared a research paper to summarise my methods, and sent it to two medical journals. When it was not accepted I sought other  ways of confirming the matter, so I contacted a freelance journalist in Melbourne who phoned the head of the research institute to verify my report, and articles which reported the success of the project were published in four interstate newspapers. See more here.

I didn’t have any specific evidence that people were copying me until I joined Wikipedia in 2007, and was described as a fringy kook  by two of the editors who eventually got me banned. However, I noticed that there was a page about the chronic fatigue syndrome which included the concept of PACING which was a rewording of my methods, and in 2012 I saw that a London psychiatrist named Simon Wessely had been given a John Maddox prize for his work on the chronic fatigue syndrome and exercise which he started in 1987, and then in January 2013 he was granted a knighthood. At a similar time his colleague Peter White had a research study of CFS and exercise in 650 patients published.

My ideas, methods, essays, books, and website are all subject to copyright, but I have seen other people reword and duplicate them and claim copyright for themselves, which is fraud, and I have seen patients discussing the topic. However, instead of talking about their supposed mental problems they are discussing such things as when to exercise, what type to do, and for how long, and how to avoid the after effects, and how to change their general activities throughout the day or week etc. to avoid relapses.

My methods have completely changed the world of opinion about chronic fatigue, and it would be good if someone would acknowledge my contributions, instead of giving all of the praise and prestige to the copycats. I suppose they are allowed to use my ideas to make money and help other patients, but they should acknowledge that they are using my methods, so that I get the credit and the gratitude, and whatever financial benefits that I am legally entitled to.

(Note that because I took numerous risks with the complicated responses to exercise in 1976 I was able to design a program which was perfectly safe for other patients in 1982. In particular I didn’t want them to become the victims of the advice that I was given to run faster, and faster, and faster.)

 

The guidelines which I wrote for the instructor of the research project in 1982 which many people now copy and reword, and claim to be their own.

I.F.R.T. Neurasthenia Fitness Instructors’ Information Sheet

Aims

1. To improve the physical working capacity of n.c.a.’s.

2. To provide information about the condition

3. To provide instructions on how to control the condition

4. To gain scientific information on the condition to aid research.

Methods

 

1. General neurasthenia principles

White, P.D. (1951) Heart Disease 4th edition McMillan & Co., New York, Ch. 22 Neurocirculatory asthenia p.587.

“The plan of life of the patient is to be worked out with care. Usually normal but quiet work and play are to be advised, with avoidance of late hours, coffee, tea, over-indulgence in alcohol and tobacco, strenuous vacations, excitement in general, too many hours at work, and new and burdensome tasks or duties. Often the patient himself is aware of this necessity, but he has perhaps dislike to humor his symptoms or to fall behind his fellows in strenuous living in the business, professional, and social world. With clear medical advice, however, he realizes the wisdom of doing so, and gradually he adjusts himself to suit his symptoms, and is surprised at recapturing a feeling of well being.”

 2. Neurasthenia and the heart: Information

(a) Car engine analogy:

A car with a good engine may be troubled on acceleration or hill climbs if the carburetor or distributor are out of adjustment or condition, but the car may travel on flat roads at an even speed. Similarly, a neurasthenic with a good heart may be troubled by strain due to a problem elsewhere in the body, yet there is no problem in moderate exercise and lifestyle.

(b) Using diagrams as aids explain:

(1) No coronary artery disease or blockage and no sign of subsequent heart muscle damage. A narrow or blocked artery may cause muscle damage and cardiograph abnormality. Damaged arteries can now be bypassed if necessary.

(2) No heart valve disease. . The healthy valves ensure that blood flows in one direction through the heart and there is no sign of back flow. Artificial valves can now be implanted if necessary.

(c) If fainting occurs, and the pariticpant falls to the ground, blood flow to the brain is aided by the reduced affect of gravity and the participant wakes up.

(d) Charles Darwin became neurasthenic at 30 and died at 72. Florence Nightingale neurasthenic at 30 died at 93.

 3. Neurasthenia exercise principles

(a) no sprinting or accelerating

(b) no heavy lifting or strenuous work

(c) gradually improvement (allowing for fluctuations)

(d) work at own level with pulse 120/140 bpm even if this means periodically reducing performance

(e) if overexercise occurs and the volunteer appears distressed by faintness and dizziness, he should stop exercise and alternately pace about and rest and take deep breathe until recovering, but may continue to feel some distress for a while.

 4. Personal and social principles

Develop independence of mind and action based on the notion that:-

(a) there is a need for neurasthenics to perform in moderation and therefore

(b) a need to ignore or resist social pressures to perform at normal levels.

5. Medicals at:

1. commencement

2. 3 months

3. 6 months

And for . . .

(a) patient surveillance

(b) source of research information

Note: This information applies to neurasthenia. However, some recruits who experience palpitations may not necessarily be neurasthenic and therefore may respond normally to exercise and not need to be restricted in their activities. Such individuals should be encouraged to train regularly and to keep fit.

My comments on that project report

 I developed my ideas based on my own personal experience, and when I later learned the medical language and read the medical literature I found that a very small number of other people such as Paul Dudley White, from his 1950’s publication, had made good observations, so I used them as evidence to verify the quality of my ideas. Nevertheless, he was unable to explain, identify, or even recognise or prove physical limitations, and his ideas were abandoned, and were certainly not recommended to me as treatment. In fact, I was told the exact opposite in 1975 when the dominant views were that it was a non-physical mental disorder, and I changed that.

The exercise guidelines for chronic fatigue patients which I wrote for the instructor of the 1982 project have been copied and reworded by some of the world’s top researchers ever since, simply because any other method won’t be successful. See the full research paper from 1982-3 here. The results, recommendations, and refinements have also been copied to the extent that they are the dominant methods and focus of research today.

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I scientifically proved that chronic fatigue was due to chronic physical impairment, and not a constant state of anxiety, and anyone who argues otherwise is either ignorant or a liar.

Wikipedia

Wikipedia’s page about the treatment of the chronic fatigue syndrome would be completely and utterly useless and worthless if they had not included a reworded version of the methods which I developed, defined and proved between 1975 and 1983. They were the process of gradually improving fitness while exercising within limits, and modifying lifestyle to prevent the fatigue, and educating the patient to understand the physical and physiological causes of the symptoms. Those three methods are now called “Graded Exercise Therapy”, “Pacing”, and “Cognitive Behavioural therapy”. See here.

The editors would be fully aware of my research because of the time I was involved with Wikipedia here, and the subsequent evidence and proof of it, which I provided on my website in the form of references to essays published in The Australasian Nurses Journal, and newspaper articles which reported the start and conclusion of my project at the South Australian Institute for Fitness Research and Training in Adelaide, South Australia. I have since published 11 editions of a book between 1994 and 2000, which eventually included more than 1000 pages with in excess of 100 on chronic fatigue and battle fatigue and related symptoms, so that patients could understand and manage their symptoms in a much more effective way than had been previously possible. See here, and my book here.

Those disgraceful and ungrateful editors have not mentioned my name, and are protecting  a London psychiatrist named Simon Wesseley from being recognised as a copyright thief for systematically copying my methods. Wessely is reported as being first interested in the topic  in 1987, and Wikipedia has a biography of him in which they say that he began his interests soon after the diagnosis of chronic fatigue syndrome was officially introduced, which was in 1988, just  five years after I had scientifically proven the benefits of my own methods by 1983. See here.

Why I started studying my own ailments

When I began studying my own ailments in 1975 it was because my doctors could not explain or effectively relieve any of my symptoms with any of their treatments.

I was not aware of it at that time but research and treatment into chronic fatigue was based on the assumption that the abnormal physiological reactions seen in patients was evidence of  emotional or psychological problems in the patients life, such as the fear of exercise. Consequently they were being advised to ignore their symptoms and exercise vigorously regardless, with the net result that they developed more problems, and refused to train. See one of many reasons why here.

By contrast, I had been involved in a lot of exercise and sport as a teenager, so, when I developed health problems by the age of 25, I knew beyond a shadow of a doubt,  that my response to exercise was abnormal and was due to abnormal physical and physiological factors, and therefore developed my treatment methods based on that assumption. In particular that I had to keep my exercise levels within appropriate limits, and adjust my lifestyle accordingly. See my methods here.

Nowadays all top researchers, and clinics and hospitals which treat those ailments use my methods, but don’t acknowledge the source, and the vast majority of patients who benefit from my methods take them for granted without knowing that I exist, or how much time and risks I took, or how much ridicule and criticism I had to go through in the process of developing those ideas. See my report here.

Much of the reason that people don’t know that I was responsible for the changes is because my ideas were copied by other researchers such as Simon Wesseley, who had them published in medical journals, and were given the credit for producing them.

 How I developed my methods

In 1975 I was experiencing a large number of ailments which were not responding to any form of medical treatment so I began to study them myself to develop my own methods.

In 1976, one of my attempts involved enrolling in an exercise program at the South Australian Institute of Fitness Research and Training where I found that I was not able to do the same type or level of exercise as other members of those classes. However, I had a lot of experience with sport and gymnastics when I was a teenager, so I modified the type of exercise to make it practical to continue, which I did, very slowly, for almost a year.  I injured my knee cartilage in about the tenth month, and had to stop.

However, I then began to read the medical literature to learn more about the problem, and had many of my ideas published in The Auatralasian Nurses Journal. By 1982 I had learned that some of the top researchers in the world were having difficulty getting scientific data on the effects of exercise, because they were unable to get patients with my particular symptoms to train for long enough.

When I discussed those matter with Tony Sedgewick, the head of that institute, I suggested that if his researchers used my methods they could get the information they needed. However, when he told me that they were too busy on other projects he asked me to design and co-ordinate that project myself, which I did.  During those discussion he said that I was a world expert on that topic.

Within two years I had established that the method was reliable, so it became possible for anyone who used it to get any type of research data on the effects of exercise.

That method has since since been used by thousands of researchers all around the world, where some of them may not be aware that I developed and perfected the principles, and was the first person to scientifically prove the concept. That method is described here.

 One small aspect of my observations and research

I may describe various aspects of chronic fatigue  and exercise on this webpage, but for now, I can link to my previous webpages here, and present a YouTube video below,  which shows one of the main features of the method.

The first half discusses the type of breathlessness seen in the most common type of chronic fatigue syndrome, and the second half discusses the response to exercise, and, when and how to train safely. Max Banfield

See an example of how my descriptions, research, and recommendations are being described as “New” methods by other researchers in 2013 here.

This is a quote from . . . The research paper called “Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals with Chronic Fatigue Syndrome” was published on June 27th in the Physical Therapy Journal (PTJ).”

“Ripon, CA. August 8, 2013 – Workwell Foundation announces the publication of a new study supporting previous findings that a 2-day Cardiopulmonary Exercise Test (CPET) protocol objectively documents post-exertional malaise (PEM), the most commonly recognized symptom in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). The study revealed a statistically significant performance decrease on Day 2 in workload at ventilatory threshold (VTWL), workload at peak exercise (WLpeak), volume of oxygen consumed at ventilatory threshold (VTO2) and volume of oxygen consumed at peak exercise (VO2peak). In short, individuals with CFS/ME were unable to reproduce their Day 1 performance on Day 2. The statistical classification analysis points to a diagnostic biomarker for CFS/ME with a 95.1% accuracy.

Physical Therapists: Can develop appropriate activity management programs using results of the 2 day CPET. VT often occurs at very low levels of oxygen consumption and workload. Normal activities of daily living may exceed a patients VT necessitating very limited and gradual activity interventions.

Medical Researchers: Clinical trials that employ Workwell’s CPET protocol to qualify study participants and to measure outcomes, reduce confounding problems of patient heterogeneity that have hampered CFS/ME research for years.

Attorneys: Can use the functional assessment of 2 day CPET to provide objective clinical evidence disability.(end of quotes here).

See also here.

My research paper from 1982-3

See my research paper from 1982-3 here. I recognised all of those advantages more than 30 years ago, and have been repeatedly recommending them.