People want to learn as much as possible from the PACE trial for chronic fatigue syndrome

In recent BMJ discussions Tom Kindlon has referred to adverse effects in patients who participated in the CFS PACE trials, and Ellen E.C. Grant has questioned the value of exercise methods being used as a form of treatment.

I responded by describing how I developed an exercise regime to treat my own ailment with some beneficial effect in 1976, and was then invited to design a program for other patients at the South Australian Institute for Fitness Research and Training in 1982, with success which was widely reported in local and interstate newspapers.

I have since described that set of guidelines as The Banfield Principles to distinguish them from the standard methods which existed when I first started training, so in this report I will discuss the symptoms, and then explain some of the problems encountered with exercise, and then list some of the principles.

The symptoms

The symptoms which I was attempting to treat included as sub-set which occurred in general, but were particularly notable during any form of exertion, and they consisted of an abnormal increase in pulse rate as the level of exercise increased, and a type of breathlessness which occurred intermittently, after about 30 or more yards, as I walked briskly or jogged. Other symptoms such as faintness, and dizziness could occur, but mainly in the more rapid forms of exertion such as sprinting. Also excessive exertion was sometimes followed by symptoms which required an abnormal period of time to return to normal.

Background information

I didn’t know anything about medicine at the time, but the general view was that the symptoms were part of an abnormal physiological response to exertion which was determined by the exercise combined with anxiety which both affect pulse rate, blood pressure, and breathing, so the fear of exercise had been suggested as a cause.

I had no such fear, so I had determined that regular exercise might be useful on the basis that it was a physical ailment of some sort.

When I was developing the methods I encountered a number of problems which needed to be solved, but then, when I was asked to design a program for other patients I needed to summarise them, so I will first give some information about the problems.

I had experienced various levels of persistent fatigue, so I knew that some people would not be able to start, or benefit from training. I therefore provided the principle that patients should not be forced to train, but should volunteer.

I also knew that the starting level would vary from person to person, so I recommended that they start at a low level and gradually improve at their own rate.

When I started there was some social pressure to keep up with other runners, which I ignored, so when I produced the guidelines I recommended that the patients train in a separate group and be given instructions that each individual should be free to train at their own level.

I knew that my body was responding abnormally to exertion, and that it not only applied to fitness training, but also to daily activities of other sorts which needed to be managed in a similar way, and that such factors would affect the capacity to exercise.

I therefore also knew that the ability to do the exercises on one day did not mean that it would be possible to improve the next day, or the next week etc, so I presented the principle that the exercise level needed to be flexible.

I found that if I ignored the symptoms which occurred with higher levels of exertion, and continued at that level, that they would get worse and I would have to stop, and possibly have after effects, so I presented the guideline of staying within limits.

I also recommended that if the individual over-exercised they should be free to rest and recover and start again any time they wanted, in that session, or the next session a few days, or a week later.

The Banfield Principles for those who participate in the exercise program

1. If rest is necessary then rest may be the best treatment at that time
2. If walking is possible then walking may be the best exercise
3. Any improvement in fitness levels should start at a low level, and improve gradually as determined by the response to exercise.
4. The exercise needs to include light activities rather than strenuous exertion, especially in the early stages.
5. As a general guide sprinting should be avoided.
6. Anaerobic exercises such as weight lifting or forced movement against any form of resistance should be avoided.
7. Each individual should set their own pace and not be concerned with the improvement rates of other people because they may have a different aerobic capacity.
8. Walking or jogging is best on flat ground, especially in the early stages when the person is assessing their aerobic capacity.
9. As a general guide each individual may not be able to walk up moderate slopes, or especially steep hills, until they understand their fitness limits, and then only do so if they think that it is practical and possible, and at a pace determined by their experience.
10. If the person experiences the sense of breathlessness when they are walking or jogging, then they can take two or three slow, but deep breaths in a row, or in any way that suits them, and then should be able to continue, but if they can’t then they can stop and rest for awhile and resume at a lower rate.
11. The objective is to train regularly in a manner that is possible, not in a predetermined way that increases to a degree which makes progress impossible.

Conclusion

It is possible for some chronic fatigue patients to participate in exercise programs and benefit from the training but it needs to be determined on an individual basis.

References . . .
1974: Hurst J.W. et al., The Heart, 3rd edition, McGraw Hill, New York, p.1554 . . . (a quote from a section about the abnormal physiological responses in neurocirculatory asthenia (known by many other names including the Effort Syndrome) . . . ”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”
1982: August 5th, Fitness helps in therapy, The News (Adelaide) p.5.
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.
2013 (4th October) Development of the design principles for safely conducting research into chronic fatigue and exercise at the South Australian Institute for Fitness Research and Training in 1982, British Medical Journal - BMJ 2013;347:f5731
2013 (December 9th), Banfield M.A. Response to Ellen CG Grant's question about why anyone would expect anything of scientific importance from the £5m PACE trial for CFS, British Medical Journal - BMJ 2013;347:f5731