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Be very careful if you are asked to participate in graded exercise regimes. The following is an excerpt from ME and Learning - Problems and Solutions (also on this site) which explains the factors to be taken into consideration:

Where passive physiotherapy may be helpful, active physiotherapy (in which effort is made by the patient) can precipitate relapse. In passive physiotherapy, limbs are moved gently by someone other than the patient to maintain flexibility and blood flow.

If recovery is well established and muscles are functioning more normally, gentle activity may well aid rehabilitation. But where the patient is not permitted to adjust the programme according to the effects of the activity, relapse can occur. One apt cartoon shows someone running, and the captions read: "Two laps...Four laps...Relapse." (Cartoons by Arber) This pattern often occurs until a patient has learned to pace him/herself and understand what his/her body is capable of according to the stage of recovery.

The key word is "stabilisation". (Dowsett, Hunt) Simply walking around a secondary school is commonly a cause of relapse in CFS/ME until stabilisation of the condition has occurred. Studies indicating that physical effort may help people with chronic fatigue have been based on selected groups of patients, many of whom do not have some of the classic neurological symptoms of ME itself, such as sleep disorder (Bell 1995). These patients may therefore either have another type of chronic fatigue and not the neurological disease ME, or they may be significantly recovered already, which is why they do not have sleep disturbance. This in itself would make them ready to undertake gentle, graded exercise such as walking.

Some researchers have explained to particular patients that they are too ill for the regime to help them.

A study in the British Medical Journal claiming that a significant proportion of patients felt generally improved after a programme of walking and were still improved a year later (Fulcher and White1997) specifically excluded patients with sleep disturbance. The researchers were at pains to point out that their results applied only to those patients who did not have this symptom.

People with ME use a far higher proportion of energy for what is called "resting strength" than others. This is the energy expended merely to sit, digest, and carry out normal bodily functions. Experiments show that many have reduced volume of oxygen uptake. This is a measure of aerobic fitness or how efficiently the body utilises oxygen. This reduced uptake is equivalent to someone with emphysema or a 70 year old with a heart condition. It is thought to be linked to a mitochondrial dysfunction. (Behan W M H, et al. 1991) The mitochondria are the "cell batteries" from which our muscles derive energy.

Note that the patients in these studies were all well enough to get to the clinic regularly. Indeed, in most studies it is a condition of joining the programme that patients are well enough for this. And many of the "activities" they were able to do, and which have been quoted as "aerobic exercise", with all the implications of such a description, were in fact very small movements like raising an arm.

There is new evidence from studies still being carried out to show that whilst some ME patients asked to exercise may be able to withstand it initially, the longer-term results are not always good, and the body begins to malfunction after a time-lag.

Clinical evidence shows that an effective procedure is to live "within your own energy limits" [Ho-Yen, ME specialist and consultant microbiologist, Raigmore Hospital, Inverness]. Then, in most cases, these limits will expand as the body heals. You can test the barriers gently from time to time, taking care not to overdo things. In our experience, you need to be very patient and not try to force your body into healing itself quicker than its natural rate. You also need to keep some energy in reserve for the healing process.

We advise: Play safe during the healing process. Those who don't play safe may get away with it, but often they do not get away with it. One consultant I know actually apologised for making his patient much worse, which was very brave of him. Most people do not get an apology when the unproven "exercise treatment" which has become fashionable lately goes wrong. The same thing was practised in the past on other young people and was eventually discredited.

As you get stronger over time, you will naturally want to do more - take calculated risks - go for longer walks, have a day out, go to a party - that's fine. We advise you to control your own risk level, however, rather than allowing it to be imposed from without. Self-management, and learning to control your output of energy (mental as well as physical) so you don't provoke a relapse - these are the two keys to successful rehabilitation. Young people are supposed to be consulted about their own treatment, so if you are able to explain to your doctor what you ARE doing to help yourself, you are less likely to be expected to follow someone else's regime.

Note that you and your parents have the right to reject any treatment you don't feel would be helpful.

Here are two experiences of many that illustrate what can happen when the patient is not well enough yet for graded exercise. First, from the Network MESH newsletter, edited by Theresa Coe, AfME Council of Management Member:

I'm a 27-year-old severely affected member of Network MESH. I've always pushed myself gently to do as much as I could, so I didn't see how I could do more. Even so, I was put on a graded activity program by my local community hospital, but after just a month the strain it put on my body brought my glandular fever back with a vengeance (this was what had started off my chronic fatigue at nineteen).

I felt so ill, but my sleep increased greatly (lack of sleep had always been a limiting factor in how much I could do before) and so, because of getting more sleep, I was able to push myself harder.

Looking back, obviously my body needed the extra sleep to fight the glandular fever, but instead I was using it to keep up with the graded activity program. Needless to say, I got more and more ill. When I went for my monthly chat with the psychologist running the course, I was praised for keeping up, despite feeling on the verge of collapse. I remember thinking how that didn't seem right - I felt so awful, how could this be a good thing? But I carried on blindly, having been told that I'd lose all the stamina I'd built up if I rested - I was really worried about this.

Eventually, I ended up completely unable to walk at all. Now, four months after stopping the program, I can still only walk 5-12 steps a day, so I'm worse than I've ever been. I just want other people with ME to know how dangerous graded activity can be if you're already severely affected. Please listen to your body and trust your instincts, no matter how much anyone in the medical profession may try and convince you to do otherwise.

From a personal letter from a teenage girl (typed):

I'm sorry I'm unable to write this but I've been very ill. Ever since going into hospital I've not been the same. I wondered if I'd had a relapse, a lot of my old symptoms have come back. I can't sleep at night, the nightmares are terrible, I'm back to sleeping till nearly lunch-time, when I stand up my legs just give way and the pain is terrible I'm back to taking six painkillers a day, in fact I'm watching the clock to see when I can have my painkillers. Although I'm eating my weight is not improving since November I've lost another four pounds I weigh now just six stone. My arms are so thin I can't wear my watch as it keeps falling off. We went back to the hospital last week to see Dr -----. He agreed that the graded exercise programme hadn't done me any good ... and that I would just have to let the illness run its course. He also said that I could stop the physiotherapy.

No-one can tell whether exercise will be all right for you to do - except for you yourself. We advise you to take charge of your own body and be sensitive to the messages it gives you. In our experience, people with ME are more likely to do too much as soon as they feel able to, rather than too little.

Of course, if people are ill for many years, they may build up habits and also they may remember nasty experiences when they tried to do too much in the past. So they may not realise that their body has now healed sufficiently to do some activity, and it is common to find stories in the papers about people who have suddenly found they are able to do things again - generally they attribute this to some new therapy, "healing" procedure or food supplement, but the stories are remarkably similar and all have in common the fact that someone has been ill for years, and has rested for years, when something has suddenly made them realise they are now ready to do more. A situation in which stress is removed and the person given "permission" to take account of their illness can also result in a dramatic improvement, such as the case of a boy whose new teacher made sure that he was not put under pressure to do things he could not do. The result was not less work, but more capacity for work, better grades, and a physical improvement.

Interestingly, these stories of what I call "catalytic improvement" after a number of years are similar to the more successful stories of people selected for exercise studies - studies which are generally quoted as meaning that the exercise itself achieved the improvement, rather than the body's own healing mechanism during the previous years resting, coupled with a new catalyst such as, in this case, meeting understanding doctors who take a personal interest in one's case. It reminds me of a new education system which was tried out for the teaching of reading. The "test" schools who were trying the new system had new books and plenty of visits from people keen to see how they were doing. Those schools who were "controls" had no new books and no visits. It wasn't surprising that the schools without the new books and without the special visits didn’t do as well. They weren't true "controls" at all. Nevertheless, the improvement in reading in the "test" schools was solely attributed to the new reading scheme. This was faulty research but the same error is still being repeated in research today.

There is a 1998 study of ME (which I shall detail in my new book) which has, apparently unwittingly, at last revealed that living within your own energy limits does actually result in physical healing, rather than the doctrine of always pushing at the barriers that is so popular at present. ME organisations are often contacted by the people who constitute the fall-out from regimes which are unsuitable for them. Many of them want to complain, and years afterwards wish that they had complained, but they are simply too exhausted and too ill to do it. So their plight never receives publicity. Only the "success" stories get told, and, as we have seen, it may not be the exercise at all which has achieved the success for them.

In our medical adviser's opinion, young people need support (practical aids and kindness) and encouragement, but they do not generally need kicking into overdrive - they are far too likely to do this for themselves!

Maxim to remember: There is a world of difference between slowly getting a healed body fit again, and provoking a relapse from ME.
 

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