OPEN LETTER TO PROFESSOR SIMON WESSELY

J Neurol Neurosurg Psychiatry Published online November 17,2012

Doi: 10.1136/jnnp-2012-303208

Background:  Professor Simon Wessely, the British psychiatrist who claims that ME/CFS can be cured by cognitive behaviour therapy and graded exercise therapy, has co-authored a recent journal article. The thesis of his article is that there is a descrepancy between what he calls “evidence-based medicine” around ME/CFS (i.e. explaining, diagnosing and treating ME/CFS his way) and what he calls the “narrative and individual accounts” (i.e. explaining, diagnosing and treating ME/CFS other ways). He is particularly upset that the Scottish Public Health Network developed guidelines for ME/CFS that use the Canadian definition and do not adopt his preferred model of care. He warns us that, if followed, the Scottish guidelines would lead “to the adoption of dangerous diagnostic criteria for ME/CFS, as well as preventing patients from making informed decisions about treatment options, and discouraging clinicians from following evidence-based medicine and recommending proven treatments for ME/CFS.” Of course, we have never though that Professor Wessely's model of ME/CFS, which has been widely implemented, was based on valid evidence.  We have argued that following his model leads to these exact consequences.  Now the shoe is on the other foot.

The Scottish guidelines adopt the Canadian Consensus definition for ME/CFS. In his critique of the Scottish guidelines, he lashes out at the Canadian Consensus Document.

To:  PROFESSOR WESSELY

METHINKS THOU DOST PROTEST TOO MUCH

December 3, 2012

It is rather regrettable that you never bothered to check your information by contacting the National ME/FM Action Network.  If you had, you could have based your opinion on the facts rather than fantasy.

It is even more regrettable that you are insinuating that the scientific community and the health and social professionals working so diligently to understand, diagnose, treat and support ME/CFS and FM patients are all on the wrong path and only you know the correct approach. That is, to say the least, the height of arrogance.

When the Expert Panel met, they decided to adopt the term Myalgic Encephalomyelitis / Chronic Fatigue Syndrome simply because some countries used one of the terms while some countried used the other.  The research community published under both names and the panel did not want to lose the research published under the name that was dropped.

Under the Canadian Definition, ME and CFS are one and the same. However, people who experience chronic fatigue, without the additional required symptoms, would not qualify for a diagnosis. Equating chronic fatigue with chronic fatigue syndrome, as one physician stated, would be like saying that everyone with a chronic cough has pneumonia.

The Journal in which the material was published may have gone out of circulation but that does not eliminate the valuable research that it contained. In fact, the Overviews of the Canadian Consensus document are available in 6 languages and the Canadian model has found support around the world.

I am rather flattered that you feel threatened by the National ME/FM Action Network but at the same time wonder why you took your valuable time to criticize rather than help.

Lydia E. Neilson, MSM
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK