Invest in ME - Guidelines for ME/CFS

One of the basic problems with treatment of ME is the original diagnosis of the illness.
Invariably it is too late and the current environment in the UK means that diagnosis may cover a broad range of illnesses with similar symptoms which are brought together under one diagnosis - ME - a dead-end of a medical diagnosis by a medical community which cannot even agree on a name.

In order to establish correct and early diagnosis there needs to be a standard clinical diagnosis method used throughout the country. This area is currently clouded with up to four sets of diagnostic criteria being available for use.

When a doctor or paediatrician gives a diagnosis of myalgic encephalomyelitis then they do this currently by exclusion of other illnesses and by means of basic blood tests.

Another important distinction is between guidelines used for research and those used for clinical diagnosis. One may think these would always be the same.

If a diagnosis is given to a patient based on a different interpretation of an illness then the diagnosis may be flawed. In an illness such as ME, where it is obvious that politics and prejudice have already affected how research is funded in the UK, using flawed diagnostic criteria or even using different criteria means that it will be even harder to establish a proper baseline for treatment/cure.

Here are the more common guidelines which you may come across. To read more on these we have added some links where the discussion on the merits, or otherwise, of these criteria are discussed more fully.

London Criteria

A set of criteria apparently still used by the Medical Research Council in assisting their determination of funding for ME-related projects (all psychiatric).

The criticisms of these criteria include the fact that they have never been published and therefore cannot be used objectively to select patients for a study. The MRC still find it necessary to use these criteria in conducting the PACE trials to study psychiatric paradigms for treatment of ME sufferers - something which most of the people in the ME community who have studied this find negligent.

Oxford Criteria

A set of criteria created by and for psychiatrists - these criteria are far less rigorous and may include patients with fatigue as their only symptom. As such it allows far too many possibilities of inclusion of non-ME patients and serves no useful purpose, other than to aid the assertions of biased psychiatric groups who see ME as a somatoform disorder. They therefore serve no real useful or scientific purpose.

The RCPH Guidelines

A set of guidelines we feel disappointed with. These are oriented toward the psychiatric/psychologist viewpoint with lots of references to papers by persons prominent in the debate promoting the viewpoint of ME being a psychological illness. The sad fact is that paediatricians in this country are guided by these guidelines.

http://www.rcgp.org.uk/information/publications/e_bulletin/cfsme.pdf

Fukuda (USA Centres for Disease Control and Prevention)

These are a revised version of earlier guidelines by the ISA CDCP.

South Australian Criteria

Similar to the Canadian guidelines (see below) - the newest guidelines from Australia, for GPs.

Canadian Criteria

Proper, up-to-date clinical guidelines which can also be used as a base for research criteria. Findings from the study by Leonard A. Jason PhD (Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome) indicated that the Canadian criteria captured many of the cardiopulmonary and neurological abnormalities, which were not currently assessed by the Fukuda criteria. The Canadian criteria also selected cases with 'less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms' and individuals selected by these criteria were significantly different from psychiatric controls with CFS.

See http://www.cfids-cab.org/cfs-inform/CFS.case.def/cfs.case.def.html

A link to a full description of the Canadian Guidelines is held in the Library - click here.

A recent addition to the documentation has been an overview document which can be viewed via this link.

Order Bound Copies of the Canadian Guidelines
Invest in ME are now responsible for distribution of the bound copies of the Canadian Guidelines within the UK. If you or your group would like to order copies please email us at this address with title Canadian Guidelines.

The best hope to establish a common, workable set of guidelines is to adopt the Canadian guidelines. This is one of the objectives of Invest in ME. It is one of the fundamental issues which needs to be resolved in order for myalgic encephalomyelitis to be treated in the correct way.