Severity of chronic fatigue syndrome/ME was trivialised by recent article

Dear Editor,
I refer to ‘Defeatism undermines the treatment of chronic fatigue syndrome’ (26/2/10, www.imt.ie/clinical/infections-immunology/defeatism-undermines-treatment.html). This article trivialises the severity of the illness and contains a number of factual inaccuracies.
NICE is selectively referenced. It actually points out that CFS/ME is a very serious real illness of yet unknown origin and can be more disabling than multiple sclerosis or late-stage AIDS. There is no known cure or effective treatment.
In the words of NICE: “The Guideline Development Group did not regard CBT or other behavioural therapies as curative or directed at the underlying disease process, which remains unknown. Rather, such interventions can help some patients cope with the condition” (CG53 p252). This should have been quoted.
NICE specifically make the point that CBT is not a treatment for the symptoms but an aid to help patients come to terms with their illness. Is this what is meant by ‘working’? CBT has never shown any objective benefit.
Some studies, using self reporting, have shown a subjective benefit on fatigue, i.e. as assessed by the patient, but no effect at all on activity levels when measured scientifically. The confidence intervals in these studies are so wide as to make extrapolation into a general ME/CFS population impossible.
The studies are clearly underpowered. Many sufferers take their lives because living with the symptoms is unbearable.
There is no robust scientific evidence to support GET although there was a recent heart attack! The known and frequent adverse events associated with the GET/CBT combination, have never been scientifically evaluated.
Why were NICE instructed to ignore all the biomedical evidence when drafting their guidelines? Would any pharmaceutical product obtain a product licence based on patient self-evaluation – or with the confidence interval values associated with CBT studies?
The answer is a resounding no! Why, therefore, are sufferers of ME/CFS classified by the WHO as a neurological disorder only offered CBT?
G J Morris, BSc(Psych) LLB(Lond) Dip Law