The new Canadian Guidelines for ME

Also see the following links: Guidelines Extract: ..\Information\Medical\Canadian Guidelines Extract.htm

                                Full PDF version:  http://www.mefmaction.net/documents/journal.pdf  

 

A recent initiative by the Canadian Government has produced a new set of guidelines for the diagnosis, treatment and research of ME. How will this new set of guidelines affect ME sufferers in the UK and why are they so important to us?

A dozen or so definitions of ME for clinical and research purposes can be collated into several broad groupings.  Some of them are official government documents like the American Centre for Disease Control (CDC) and the Australian Guidelines.  Others are contained in books written by eminent doctors like those of Dr Byron Hyde and Dr Melvin Ramsey.  Some are reports of narrow medical, or academic studies that focus on certain key symptoms like fatigue in the Oxford Criteria.  There are a whole group of definitions that arise out of the books and reports written as a result of the epidemic forms of ME for example those of Dr David Bell.

Within the bulk of these weighty tomes are diagnostic check lists of symptoms that serve as criteria for the establishment of a diagnosis of ME, or an ME like disease or medical condition.  Some case criteria are principally for research and others are for clinical diagnosis or sometimes both.

 

Sea of Uncertainty

In terms of the description of the medical conditions defined by the authors of these documents, each case definition is a self sufficient island in a sea uncertainty.  The many definitions of ME sit alongside each other like islands in an archipelago. Each island having its own scope, range and severity of symptoms akin to, and yet different from its neighbours.

The lack of a simple, accurate and reliable means of navigating the ME archipelago has been exploited by the psychological and psychiatric lobby.  Their contention is that the archipelago is nothing more than islands in the mist because they do not want to acknowledge the presence of physical land on that part of the map. 

They have claimed that ME is either psychological or psychiatric in origin, or that there is a heavy psychological or psychiatric component to ME.  To follow through on the island analogy, if there is any land there at all, they think it belongs to them.  They have therefore sought to rework and reclassify the definitions and descriptions of ME to suit themselves, and to carry out research work to back up their claims.

This has been despite the overwhelming evidence of the physical based criteria used in the case definitions to define what can therefore only be described as a physical disease.

The debate over the physical nature of ME has taken on different forms in different countries across the world.  Internationally, the basic character of ME, or an equivalent to ME is defined by the WHO in Geneva as being neurological. This is why they have classified ME at G93.3 within the Neurological Chapter of their International Classification of Diseases (ICD) Version 10.

In the UK the ‘Wessely School’ have sought to undermine the WHO classification of ME by claiming that ME is another name for their own version of CFS which is another name for a generalised fatigue syndrome.  They then go on to argue that their fatigue syndrome is best represented by the diagnostic label of Neurasthenia which is classified by the WHO in ICD 10 under F48.0, The Mental Health Chapter.

 

Tower of Babel

This has led to a Tower of Babel situation whereby different doctors in different parts of the country, or indeed in the same hospital or GP surgery consider ME to be different things and diagnose and treat ME in different ways.  We cannot look to medical or scientific research to sort out this confusion of tongues because the same problems and controversies have to be addressed in this domain as well.  This in turn has reopened the question of whether we are dealing with one single ME scene through a number of different eyes, or are we dealing with several, or many diseases all of which are ME-like.  This is very like the fable in which experts are sent in one by one to a dark hut to examine and report on what animal dwelt therein.  Each expert reported different characteristics that each ascribed to a single animal by examining only one part of it.  They were unable to reach any form of agreement about what the animal was because none of them could form an overview of the creature from a description of its parts.

 

International Consensus

The Canadian Guidelines take just such an overview of ME which defines ME as being the sum of its parts through the work of an international consensus panel of experts.  They have therefore defined a single, unified, physical case definition of ME that can be used clinically and for research.  The Guidelines can be used as a single, multipurpose tool in this respect which puts ME on a fundamentally physical basis.

The Report of the Chief Medical Officer’s Working Group published in January 2002 did not achieve this.  They described in general and overall terms a sort of composite of ME and CFS that they termed a ‘combined entity’, but they did not produce either a clinical or research definition, or any specific criteria for their ‘combined entity’.  Neither did they adopt any of the current clinical or research definitions of ME. 

They did, however, produce a scale of severity for their own version of combined CFS/ME and some guidance on the scope of severity and range of CFS/ME symptoms.  These, plus the results of certain basic medical tests they believed would be sufficient.  They pointed to further work being required in the fields of clinical case definitions and research definitions of CFS/ME.  They also wanted to see more work on the terminology that should be used to describe their ‘combined entity’ CFS/ME, in general and on any subgroups in particular. 

 

Compounding the Problem

The Department of Health asked the MRC to produce a research strategy based on this description CFS/ME, and to take forward the CMO’s research recommendations.  This has compounded the problems faced by the ME community in trying to obtain physical research into ME as a purely physical disease.  This results in the lack of a physically based combined clinical and research definition of ME that can be used as a gold standard upon which researchers can base their research. 

This gap could be filled by the Canadian Guidelines.  If this were done it would be far more difficult for the psychiatric lobby and the ‘Wessley School’ to use the doubt and uncertainty about the physical nature of ME that they have created as a hostage to fortune against the ME community. 

 

Adopting the Canadian Guidelines

The reasons why we the ME community needs to adopt the use of the Canadian Guidelines as the basic tool for the diagnosis and research of ME are:-  

·      That the Canadian Guidelines establish ME as a physical disease and not a psychological or psychiatric illness.

·      The Canadian Guidelines can be used as the means of diagnosis of ME and research into ME as a gold standard for both.

·      The Canadian Guidelines fill in the gaps left by the CMO’s report in both clinical and research terms.

·      That urgent review of both the CMO Report and the MRC Research Strategy needs to take place in the light of the Canadian Guidelines.

·      The Department of Health have asked NICE to produce a set of clinical guidelines for the UK.  It is of vital importance that NICE should adopt the Canadian Guidelines, or draw up something similar.