Submission - to the American Psychiatric
Invest in ME is an independent
charity campaigning for bio-medical research into Myalgic
Encephalomyelitis (ME or ME/CFS), as defined by WHO-ICD-10-G93.3
- (also referred to as Chronic Fatigue Syndrome (CFS) -
although in this letter we shall use the term ME/CFS).
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-V.
This response should be seen against the backdrop of the
devastation caused by some psychiatrists in the
regarding their treatment of people with ME/CFS and their
promotion of false perceptions about the disease to the public,
healthcare authorities and government.
When a generation of patients have been adversely affected by
misinformation promoted by a section of psychiatrists in the UK
and when the field of psychiatry has been brought into disrepute
by these same psychiatrists then 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 for whom they must surely be
priority in all healthcare provision.
We are especially concerned about the criteria described in the
new category of Complex Somatic Symptom Disorder which
seems to lump together many illnesses. It cannot be helpful for
clinicians or researchers to have such a variety of patients
under one category especially when very little is known of the
pathophysiology of these conditions placed in this category.
In the CSSD Criteria B there are terms used which are
subjective and not measurable - such as “health concerns”
Based on our experience with the treatment of an organic illness
such as ME/CFS our concern is that there is a great danger of
mis- or missed diagnoses when looking at this category and its
Not all physical illnesses can be easily determined without
extensive investigations and this category may allow clinicians
to miss brain tumours, rare cancers and other illnesses which
are difficult to diagnose.
The criteria are very vague and allow too much subjectivity.
In fact, ME/CFS could mistakenly be placed in this category if
one were to ignore 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 CSSD criteria to diagnose.
Such an action would be a major and costly mistake.
The patients we are concerned with suffer from Myalgic
Encephalomyelitis which is a neurological disease but 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
Severely ill grown ups with this disease are denied usual
medical care and threatened with sectioning 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. In the
the profession of psychiatry also suffers as psychiatrists are
often derided as uncaring, unscientific and unprofessional. The
possibility of litigation ensuing against psychiatrists who
cause such damage should also not be forgotten.
A broad unspecific category such as the proposed Complex Somatic
Symptom Disorder does not help patients who need an
honest and clear diagnosis. Any illness lacking a diagnostic
test is in danger of being put into this non specific category
which helps no one.
We are at least thankful that the APA has not attempted to
repeat the major mistake being made by prominent
psychiatrists in attempting to classify Myalgic
Encephalomyelitis in amongst Complex Somatic Symptom Disorders.
a course of action would create another source of conflict
between patients and the field of psychiatry and lead to
unnecessary loss of health, potential loss of life and possible
legal actions being taken against those professional
organizations and/or individuals who use incorrect guidance for
Chairman Invest in
Charity Nr 1114035
Invest in ME
PO Box 561
Eastleigh SO50 0GQ