From the TYMES Trust –
With the latest media splurge reading like an advertisement for Cognitive Behaviour Therapy and Graded Exercise Therapy as the answer to ME, families facing child protection investigations must have been reeling in horror. Tymes Trust has now advised 139 families in connection with such procedures, and in a number of these cases the authorities are trying to enforce these very treatments against the parents' will.
If we go back a stage, we find that the authorities have, almost without exception, seemed to believe that children with ME can recover while following a graded school attendance programme; this is of course just an educational version of graded exercise, as we have so often pointed out.
In our experience, it rarely works well, unless the child is either already substantially recovered, or does not have ME at all - which may well be the case, given that 'CFS' criteria are inventions that pull in people with other 'fatiguing' conditions, and this is the diagnosis that is most often used at the moment.
For classic ME, education in the home CONSERVES ENERGY and is more productive, both in terms of convalescence and educational achievement. This is not just an unsubstantiated opinion, but comes from the practical experience of families who have never looked back after deciding to home educate. This really is not surprising, since one of the three principles for managing ME, according to the great ME expert Dr Elizabeth Dowsett, is CONSERVATION OF ENERGY.
However, state education is the child's right. It should be possible to put in place systems of education that do fulfil the aim of conserving energy, without the family necessarily having to remove their child from the school roll and home educate. Virtual education and home tuition can both play a part for families who wish to stay within the state system during what may be a long recovery process. There should be no pressure on a child with ME to get back to school unless they are clearly strong enough to do so without their health or ability to learn being adversely affected.
With all the physical demands that are placed on a child just to get dressed and get to school even before any lessons are attempted, together with the effort needed to move around the school, socialise and carry bags, the typical state approach of graded school attendance for children with ME is frequently unworkable.
When it fails, and if the authorities then prove intractable in their approach, child protection procedures may be used to enforce the programme. And when that fails too, because the family quite reasonably objects, we may see these attempts to admit the child to a psychiatric unit against the parents' wishes, for physiotherapy, graded exercise and cognitive behaviour therapy. In effect, by exercising their right to stay within the state education system, these parents find themselves at risk of 'losing' their child to the state. This is clearly wrong, and a huge injustice.
Given that the initial graded school attendance programme didn't work, and has led to a deterioration in the child's health, how could anyone believe it possible that graded exercise in any form would do the trick?
Statements by exercise physiologist Mark Van Ness, whose research clearly demonstrates the reality of post exertional deterioration, and by Dr William Weir, whose thirty years' experience with ME patients reveals the same phenomenon in a clinical setting, both show the recent media coverage up in a very poor light. It has caused huge upset and distress amongst families. They know it can only make things harder for them when they quite reasonably try to help their child pace themselves carefully, and convalesce effectively.
Former Head Teacher and Executive Director of Tymes Trust