The ME Association and The Young ME Sufferers Trust today jointly reject this week’s call for the number of graded exercise therapists to be increased. This is because of our serious concern for the safety of patients given this controversial approach to management.
When patients are made worse by GET (which is based on the flawed concept of deconditioning) this is not merely due to a problem with the way in which the therapy is delivered. Post-exertional malaise is a key diagnostic criterion for ME/CFS. Put simply, the illness worsens as a result of physical and mental effort. Advocating progressive exertion is to show a worrying lack of knowledge about the nature of the illness itself.
Whilst it has been noted that children may be cajoled and persuaded to over-exert themselves, inappropriate levels of activity can only be sustained for a limited period. Do too much and they may suffer severe exacerbation of their condition. We do not consider it responsible for ME charities to promote such treatment for children or adults with ME/CFS.
Furthermore, any treatment that causes an adverse reaction in 33% – 50% of those using it cannot be recommended as a blanket form of treatment, as in the case of the guideline for treatment of ME/CFS produced by the National Institute for Health and Clinical Excellence (NICE). If a drug treatment were causing this level of adverse reactions, serious questions would be asked about its use.
The ME Association and the Young ME Sufferers Trust are therefore jointly calling for an urgent review of the NICE recommendation that everyone with mild or moderate ME/CFS should be automatically offered a course of GET. We consider this is likely to result in iatrogenic damage to some patients. We have experience of cases that were mild or moderate which became severe with this form of treatment.
The only form of activity management that the ME Association and the Young ME Sufferers Trust can endorse or recommend is pacing – a process whereby people modify their levels of exertion as appropriate with the severity and stage of their illness, so as to adapt to the characteristic fluctuations in their condition, maintain a sustainable level of activity, keep symptoms at bay and allow further recovery to take place.
The ME Association
The Young ME Sufferers Trust