Treatment of CFS/ME
This account is based on the techniques used by Dr David Smith of Essex, UK who has an excellent record of sucess in this area. However, this is my version of his treatment and the reasoning behind it. It has not been given to Dr Smith for his approval. Any errors or distortions are mine.
Many of his views centre on the concept of psychoneuroimmunology, for which there appears to be a growing body of evidence. While there is still a lot of debate as to the aetiology of the illness it seems that, whatever the cause (e.g. stress), the effect is on the feedback system and removing the trigger(s) or precipitating factor(s) does not, in itself, bring about a cure. Treatment is aimed at breaking the feedback that is maintaining the symptoms of CFS/ME/CFIDS.
Outline of the treatment
There are two components - use of medication and an activity programme.
Medication
Tricyclic antidepressants to ensure refreshing sleep. Typically, at night,
Each one elevates a different neurotransmitter so it seems logical to use a mixture rather than one. The dose starts off low and is increased until the patient wakes refreshed in the morning. The primary aim is to induce refreshing sleep but the alleviation of stress is also significant. As recovery proceeds, the dose is reduced. Eventually, when recovery is established, the dose is gradualy reduced to zero over about a year,
To increase activity during the day, Prozac is taken in the mornings. Starting at 1 ml and has increasing probably to 5 ml. Liquid Prozac is used so that a very low dose can be used. The doses are below those used to treat clinical depression.
This medication combination is unusual but has been checked to ensure that there are no adverse interactions.
Activity programme
Mental activities
Different activities that utilise different parts of the brain are repeated throughout the day. Given that CFS/ME is a neurological (though not a psychological) disorder, it seems reasonable to ensure that as many neurotransmitter receptors as possible are stimulated. There is some evidence of degeneration of receptors and these activities may help prevent this.
The starting point is that different activities are processed by different parts of the brain. Visual input, speaking, listening, written maths, mental maths, music, poetry are examples.
It is desirable that all processing areas of the brain are kept in use. As many as possible of these different activities should be carried out during the day. For each activity there is a target duration, arbitrarily set initially to 10 min. but this will vary according to the individual, severity of the disease and the activity. Exact duration is by trial and error. Example, read and think about a passage from a book until you realise that you are not taking it in, stop and note the time (even for well people this can be as low as 20-30 min.!!). Take a couple of minutes off this and you have the duration time. It should then be possible to carry out the activity without suffering ill effects of any kind. As recovery occurs, this duration time will increase.
Physical activities
Should be nothing too serious and nothing that will induce payback. A regular walk, or cycle ride, or whatever. A cut-down version of pre-CFS activity gives a sense of returning normality.
Do each activity (mental and physical) for the appropriate time, then stop and do another one. When all activities are completed, start again. Treat this as a kind of "working day" and pack up at about 5 pm and do something more interesting or even relax. This is not meant to be an easy option in that you have to work at it. Very, very important is that it must not produce any ill effects (apart from boredom) and so it is possible to keep it up day after day. Note that it should not be necessary to have to sleep during the day. This is why it is so important to adjust the medication level to obtain refreshing sleep at night.
It is best to treat this programme as a philosophy, something to aim at but not necessarily to achieve exactly. Sheer frustration would make anyone overdo it and crash to a greater or lesser extent. The occasional crash may not do any harm but regular crashes will retard recovery.
A final comment. I do realise that many people have difficulty just getting up in the morning and dressing, and the above activity programme seems unobtainable. I also realise that there are pressures to try to maintain some kind of normal life. However, it is worth thinking in terms of the philosophy of the regime and trying it, even for a few minutes for each activity.
Children
Attending school is of particular concern to all parents. A lot of parents get concerned when the kid cannot get into school regularly so they ask for extra work to be sent home - which, of course, just increases the stress and retards recovery. It is better that a kid can stay at home without the stress of attempting a full school day and concentrate on getting better. If parents push, kids could probably could get into school for a few days a week but it is not worth while risking a crash. Pressure to return to school and achieve the unachievable is probably the biggest perpetuating factor in children. The stark choice is - what is more important, school of recovery? Where a home tutor is involved, it is very important that there is no attempt to cover the full school curriculum. This would be even more stressful than attending school.
If going to school causes more damage than staying away, then stay away. If your kid cannot get into school, don't force the issue and do not feel guilty about it. This is a tough decision and is not taken lightly. Remember, the only criterion is what is best for your kids and their recovery. Getting back to full health with the loss of a few years of education is preferable to a lifelong disability. Stark choices.
Updated 24 October 2003