One of the basic problems with treatment of ME is the original diagnosis of
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.
Guidelines - what they are
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.
Diagnostic guidelines are meant to be a means to
assist in diagnosis.
Another important distinction is between
guidelines used for research and those used for clinical diagnosis. One may think
these would always be the same.
Why they are important
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
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.
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.
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 psychiatric groups who see ME as
a somatoform disorder. In our opinion they, therefore, serve no real
useful or scientific purpose.
The RCPH Guidelines
A set of guidelines we feel disappointed with.
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
(USA Centres for Disease Control
These are a revised version of
earlier guidelines by the ISA CDCP.
See also -
South Australian Criteria
Similar to the Canadian guidelines (see below)
- the newest guidelines from
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.
A link to a full description of the Canadian
Guidelines is held in the Library - click
A recent addition to the documentation has
been an overview document which can be viewed via
The Canadian Guidelines have been used as a
base for a new set of guidelines published in 2011.
Order Bound Copies of the Canadian
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.
Currently, 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.
Scotland - November 2011
NHS Health Scotland has recommended using the Canadian Guidelines
for diagnosing ME -
International Consensus Criteria
A new standard for guidelines has been published
by a leading group of international researchers. The authors discuss the
clinical application of their criteria, as well as paediatric considerations and
research applications. The authors conclude that they -
“believe the International Consensus
Criteria will help clarify the unique signature of ME” and they state
unambiguously that “individuals meeting the International Consensus
Criteria have myalgic encephalomyelitis and should be removed from the
Reeves empirical criteria and the National Institute for (Health and)
Clinical Excellence (NICE) criteria for chronic fatigue syndrome”.
Invest in ME IiME are the UK distributors for
the current Canadian Guidelines and welcome these guidelines. We have for a long
time stated that we support an evolutionary development and improvement of the
Canadian Guidelines. We believe this is a step in the right direction.
The ICC can be ordered from IiME - please email the charity for this -
In the past we, together with the European ME
Alliance, have discussed with our conference presenters regarding updating of
the criteria. The International Consensus Criteria are welcomed and we fully
support these new criteria. Available to download via this link -