The European ME Alliance was established in 2008 and consists
of 11 European national charities/non profit organisations campaigning for
better diagnosis and understanding of myalgic encephalomyelitis (ME or ME/CFS
- also referred to in some countries as CFS) as defined by WHO-ICD-10-G93.3. These countries
are Belgium, Denmark, Germany, Holland, Ireland, Italy, Norway, Spain,
Sweden, Switzerland and UK,
The Alison Hunter Memorial Foundation was established in 1998
through the initiative of the Public Interest Advocacy Centre, Sydney. The
Foundation has a primary interest in the medical, legal and social needs of
people with ME and the clinical documentation of severity.
This letter represents both organisations.
We have previously commented on the DSM-5 revisions in June
Our views have not changed since and we feel the proposed
amendments to DSM-5 now will make it even easier for people to be diagnosed
with Somatic Symptom Disorders alone
or the suggested DSM-5 Somatic Symptom Disorders can now be added to almost
any disease as an additional diagnosis. The amendments which have now been
suggested make the APA suggestions even more divorced from reality and from
any sense that they are really serving patients' needs.
Even though we are not mental health professionals or
represent people with mental health disorders we feel it important to
comment on the draft proposal of DSM-5 and its Somatic Symptom Disorders
This response should be seen against the backdrop of the
devastation caused by the misinformation within the medical profession
regarding ME and the promotion of false perceptions about the disease to the
public, healthcare authorities and government.
It is of paramount importance that the American Psychiatric
Association are aware of the dangers inherent in establishing incorrect
categories of disorders which are based on poor science, vested interests or
which do not serve the patients. It is the patients who must surely be the
priority in all healthcare provision.
We are especially concerned about the criteria described in
the new category of Somatic Symptom Disorder which seems to imply that
anyone who has a chronic or incurable illness with somatic symptoms and
‘misattributes’ their symptoms could be given this label.
Who decides when someone misattributes their pain or fatigue?
How are these symptoms measured?
How long and vigorously is a patient allowed to complain
about their symptoms before a doctor can decide to investigate further and
determine if a headache is a brain tumour or irritable bowel syndrome colon
In the SSD Criteria B there are terms used which are
subjective and not measurable – such as “health concerns” and
Based on our collective experiences with the treatment of an
organic illness such as ME - experiences across Europe and
Australia - our concern is that there is a great danger of mis- or missed
diagnoses when looking at this category and its proposed diagnostic
The criteria are very vague and allow too much subjectivity.
In fact, ME could mistakenly be placed in this category if
one were to ignore, or be unaware of, the huge volume of biomedical research
and evidence which shows it to be an organic illness and if one were to use
only the broad SSD criteria to diagnose.
Such an action would be a major and costly mistake and would
not serve the patients or the healthcare communities.
In our experience specialist ME clinics get as many
as 40 % of patients referred with a ME diagnosis who turn out to
have been misdiagnosed.
The patients we are concerned with suffer from myalgic
encephalomyelitis and chronic fatigue syndrome which is a neurological
disease. Yet all too often these patients are being treated as if they had a
Parents of children with ME are restricted in
visiting their severely ill children in hospital or worse still the children
are taken away from their families as the healthcare professional believes
it is the family that is keeping the child ill by having ‘wrong illness
Severely ill grown ups with this disease are denied normal
medical care and threatened with being placed in mental hospitals if they
are too ill to care for themselves and ask for help.
This not only sets patient against healthcare professional
but also is a waste of resources and of lives.
A broad unspecific category such as the proposed Somatic
Symptom Disorder does not help patients who need an honest and clear
Any illness lacking a diagnostic test is in danger of being
put into this non specific category which helps no one.
We hope and request that the APA listens to patients and
avoids creating a category of mental illness that is meaningless.