Re: People want to learn as much as possible from the PACE trial for chronic fatigue syndrome
I would like to thank the editors of BMJ for publishing my comments about my 1982 research project on chronic fatigue and exercise on their website on 4th October 2013.
I have only recently found that item on 5th December 2013, and would like to add a further response to the letter of Ellen C.G. Grant who asked why anyone would expect to learn anything of scientific importance from the recent five million pound PACE trial. Grant also reports on the importance of studies into mitochondrial dysfunction.
First of all, in 1975 I had been offered many different treatments, mainly medications, for my own ailments, but none of them had any beneficial effects, so I decided to try and find my own solutions.
One of the main symptoms was an abnormal physiological response to exertion.
I began with the objective of joining an exercise class, and gradually improving my fitness until I returned to normal health.
At that time I heard a radio report about an organisation called the South Australian Institute for Fitness Research and Training which invited members of the public to enrol, so I did on the grounds that research doctors might know more than my local GP and specialists.
The institute, as I understand, had some specific studies, and, or, classes for people with such ailments as asthma, high blood pressure, and arthritis, and for those who were overweight, or cigarette smokers etc, but it did not have anything for those who had chronic fatigue.
Consequently, I was placed in a standard group where all kinds of people trained, including sportsmen, and those who were recovering from injuries, and those who just wanted to get fit.
At the outset I was encouraged to ignore my symptoms and try to keep up with the group, but that level of activity was making the symptoms worse instead of better, so I had two choices.
The first was to stop training, and the second was to continue, which I did, by walking or jogging at my own pace.
I started training twice per week, and increased it to six or seven times per week over a period of ten months before injuring my knee, when I had to stop, and during that time my health did improve, although not to the extent that I was aiming for.
I therefore began investigating other aspects and found that international researchers were unable to get scientific information on the effects of regular exercise because patients were not able to complete their training programs for 12 weeks.
Seven years later I had a discussion with Tony Sedgewick who was in charge of the Institute, and I explained how to solve that problem.
However, because his researchers were too busy on other projects he asked me to organise one specifically for fatigue patients.
My objectives were to make it safe for all participants, and to see if the those who trained the same way as I had could continue for twelve weeks or more, and nine did. None of them became significantly worse, three stayed the same or slightly less, and six improved their aerobic capacity, and of the total, five kept training for 24 weeks or more, with one of them apparently on his way back to full recovery, and who, about a year after starting, was still training, and participated in a six mile run.
Consequently, the reason that the project was important, was because I had developed a reliable way of having patients train regularly for 12 weeks or more for the first time, and since then researchers who use that method have been able to get scientific data about any aspect of exercise which they studied.
The exercise method is also important because for some patients it may be the only effective way of improving health when other methods don’t.
Also, since then the name chronic fatigue syndrome has been introduced into official lists of diagnosis, the abnormal physiological response to exertion has become the identifying aspect in the definition, and the method of treatment which I developed has been widely used, and been given the name of PACING.
However, some researchers apparently haven’t been as successful For example, the recent five year study of 650 patients called the PACE trials has been criticised by patients where 51% report that they were worse after, than when they started.
Nevertheless, exercise training can be useful, and should be studied further, to reduce the adverse effects and improve the outcomes.
As for other forms of treatment, I have considered every possibility, and found that at least 100 different labels have reached prominence at some time in the past 150 years, and they all need to be considered in the context that they all have their proponents and potential to help patients.
The concept of mitochondrial dysfunction, as mentioned by Grant, is one of those, and I would encourage the people concerned to pursue that area of study.
However, as I said, it isn’t necessary to discard the exercise methods which have already proven helpful to some patients, and should continue to be available as an option in the future.
Max Banfield
References . . .
1974: J.W. Hurst, The Heart, 3rd edition, McGraw Hill, New York, p.1554 . . . (a quote from a section about the abnormal physiological responses in neurocirculatory asthenia which is often described as having symptoms similar to those of heart disease occurring in the absence of heart disease) . . . ”Attempts by Cohen and his associates to alter these abnormalities by physical training were unsuccessful since the patients could not or would not follow the prescribed training programme” (end of quote).
1982: August, M.A.Banfield - The Australasian Nurses Journal, letter to the editor, p.15 (an invitation for people with the relevant symptoms to enrol in a fitness training course)
1982: August 5th, Fitness helps in therapy, The News (Adelaide) p.5.
1982: December 20th, SA study matches Russian Results, The News (Adelaide) p.18.
1983: August 11th, Study lifts fitness levels, The News (Adelaide) p.13.
1983: August 20th Researchers solve mystery, The Courier Mail (Brisbane, Queensland newspaper) p.14.
Competing interests:
I was the designer and co-ordinator of a research project on the effects of regular exercise on chronic fatigue patients at the South Australian Institute for Fitness Research and training between 1982 and 1983.
09 December 2013
Max Allan Banfield
publisher
No affiliation
Unit 6, No.6 Hartman Ave. Modbury, South Australia, 5092
Rapid Response:
Re: People want to learn as much as possible from the PACE trial for chronic fatigue syndrome
I would like to thank the editors of BMJ for publishing my comments about my 1982 research project on chronic fatigue and exercise on their website on 4th October 2013.
I have only recently found that item on 5th December 2013, and would like to add a further response to the letter of Ellen C.G. Grant who asked why anyone would expect to learn anything of scientific importance from the recent five million pound PACE trial. Grant also reports on the importance of studies into mitochondrial dysfunction.
First of all, in 1975 I had been offered many different treatments, mainly medications, for my own ailments, but none of them had any beneficial effects, so I decided to try and find my own solutions.
One of the main symptoms was an abnormal physiological response to exertion.
I began with the objective of joining an exercise class, and gradually improving my fitness until I returned to normal health.
At that time I heard a radio report about an organisation called the South Australian Institute for Fitness Research and Training which invited members of the public to enrol, so I did on the grounds that research doctors might know more than my local GP and specialists.
The institute, as I understand, had some specific studies, and, or, classes for people with such ailments as asthma, high blood pressure, and arthritis, and for those who were overweight, or cigarette smokers etc, but it did not have anything for those who had chronic fatigue.
Consequently, I was placed in a standard group where all kinds of people trained, including sportsmen, and those who were recovering from injuries, and those who just wanted to get fit.
At the outset I was encouraged to ignore my symptoms and try to keep up with the group, but that level of activity was making the symptoms worse instead of better, so I had two choices.
The first was to stop training, and the second was to continue, which I did, by walking or jogging at my own pace.
I started training twice per week, and increased it to six or seven times per week over a period of ten months before injuring my knee, when I had to stop, and during that time my health did improve, although not to the extent that I was aiming for.
I therefore began investigating other aspects and found that international researchers were unable to get scientific information on the effects of regular exercise because patients were not able to complete their training programs for 12 weeks.
Seven years later I had a discussion with Tony Sedgewick who was in charge of the Institute, and I explained how to solve that problem.
However, because his researchers were too busy on other projects he asked me to organise one specifically for fatigue patients.
My objectives were to make it safe for all participants, and to see if the those who trained the same way as I had could continue for twelve weeks or more, and nine did. None of them became significantly worse, three stayed the same or slightly less, and six improved their aerobic capacity, and of the total, five kept training for 24 weeks or more, with one of them apparently on his way back to full recovery, and who, about a year after starting, was still training, and participated in a six mile run.
Consequently, the reason that the project was important, was because I had developed a reliable way of having patients train regularly for 12 weeks or more for the first time, and since then researchers who use that method have been able to get scientific data about any aspect of exercise which they studied.
The exercise method is also important because for some patients it may be the only effective way of improving health when other methods don’t.
Also, since then the name chronic fatigue syndrome has been introduced into official lists of diagnosis, the abnormal physiological response to exertion has become the identifying aspect in the definition, and the method of treatment which I developed has been widely used, and been given the name of PACING.
However, some researchers apparently haven’t been as successful For example, the recent five year study of 650 patients called the PACE trials has been criticised by patients where 51% report that they were worse after, than when they started.
Nevertheless, exercise training can be useful, and should be studied further, to reduce the adverse effects and improve the outcomes.
As for other forms of treatment, I have considered every possibility, and found that at least 100 different labels have reached prominence at some time in the past 150 years, and they all need to be considered in the context that they all have their proponents and potential to help patients.
The concept of mitochondrial dysfunction, as mentioned by Grant, is one of those, and I would encourage the people concerned to pursue that area of study.
However, as I said, it isn’t necessary to discard the exercise methods which have already proven helpful to some patients, and should continue to be available as an option in the future.
Max Banfield
References . . .
1974: J.W. Hurst, The Heart, 3rd edition, McGraw Hill, New York, p.1554 . . . (a quote from a section about the abnormal physiological responses in neurocirculatory asthenia which is often described as having symptoms similar to those of heart disease occurring in the absence of heart disease) . . . ”Attempts by Cohen and his associates to alter these abnormalities by physical training were unsuccessful since the patients could not or would not follow the prescribed training programme” (end of quote).
1982: August, M.A.Banfield - The Australasian Nurses Journal, letter to the editor, p.15 (an invitation for people with the relevant symptoms to enrol in a fitness training course)
1982: August 5th, Fitness helps in therapy, The News (Adelaide) p.5.
1982: December 20th, SA study matches Russian Results, The News (Adelaide) p.18.
1983: August 11th, Study lifts fitness levels, The News (Adelaide) p.13.
1983: August 20th Researchers solve mystery, The Courier Mail (Brisbane, Queensland newspaper) p.14.
Competing interests: I was the designer and co-ordinator of a research project on the effects of regular exercise on chronic fatigue patients at the South Australian Institute for Fitness Research and training between 1982 and 1983.