WAMES accepts the World Health Organisation’s classification of Myalgic Encephalomyelitis as neurological at ICD-10 G93.3, although we acknowledge that the condition affects many systems in the body.
WAMES chooses to call the condition ME and not to enter into the debate about whether it should be called Myalgic Encephalomyelitis or Myalgic Encephalopathy. We do not believe the term Chronic Fatigue Syndrome is helpful as it focuses on only one symptom in a complex collection of symptoms. We are also concerned that the term CFS is used as an umbrella term for a wide range of conditions with a fatigue element which could have different causes, symptom patterns and require different treatment or management to well-defined ME.
WAMES acknowledges that all people with chronic conditions have to cope with psychological stresses and some may develop clinical depression as a result of their medical condition, which should receive appropriate treatment. We have found no evidence that people with ME do not recover because of maladaptive illness beliefs, but there is increasing evidence for ongoing physical dysfunction in the body, which could affect the speed and level of recovery that is possible.
CBT & GET
WAMES is concerned that Cognitive Behavioural Therapy and Graded Exercise Therapy are viewed as the first line of treatment for people with ME & CFS. These therapies are usually used to correct maladaptive illness beliefs and muscle deconditioning but there is no evidence for the widespread existence of these in people with ME. We believe that these approaches could be harmful for many people with ME when the existence of an underlying physical condition is ignored and patients are encouraged to increase their activity at a pace which is inappropriate for them.
Patient surveys find GET is the therapy that has been most unhelpful, and some patients experience psychological stress when therapists attribute their lack of recovery to the patient not following the programme or of not wanting to get well. Inappropriate exercise in the early stages of the illness is suspected by many to have contributed to the development of chronic symptoms and slow recovery.
CBT that is used to help patients to manage their condition and activity levels instead of to change faulty illness beliefs, could be more helpful to some patients, but research shows that counselling is just as effective and less expensive. Briefing about PACE trial
WAMES endorses the Canadian Clinical Guidelines as the best of the current medical guidelines. We also wish to draw attention to the ME Association guidelines which are written by a GP and a neurologist.
We do not recommend the NICE guidelines for CFS/ME because much of the biomedical research evidence has been ignored and they recommend potentially harmful therapies.