Submission to APA Re: "Complex Somatic Symptom Disorder", DSM-5 (posted 14
From: Dr John H Greensmith, ME Free For All.org
The fundamental stumbling block in finding a single diagnostic category most
suitable for CFS/ME, whether in the Diagnostic and Statistical Manual for
Mental Disorders (DSM) of the American Psychiatric Association, or the World
Health Organisation (WHO) Handbook, or elsewhere, is that it contains, by
definition, more than one term, each of which is unlikely to be
satisfactorily accommodated within only one category.
Even if each component, M.E. and CFS, (whether one takes M.E. to be Myalgic
Encephalomyelitis or Myalgic Encephalopathy), fitted neatly and exclusively
into one category (for example, neurological), or another category (for
example psychiatric), or if it appeared always in more than one category
(for example neurological and psychiatric) but never in some other category
at all, the terms must first be separated.
The problem is further complicated for Chronic Fatigue Syndrome because,
even when separated from M.E., CFS comprises several heterogeneous
conditions, each with a variety of organic and/or psychiatric causes, which
could not be placed in a single category. Even if M.E. is taken to be a
discrete illness with no subsets (and this is not universally agreed), it is
possible that some patients may co-incidentally have an additional but
unrelated psychiatric history, or concurrent psychiatric illness, that did
not cause, or was not caused by also having, M.E.
We should be mindful of a couple of concerns beyond the establishment of an
initial classification: firstly, whether an illness shifts from one category
at onset (for example, organic) to another as the illness progresses (for
example, somatoform); secondly, there are also serious implications about
whether a treatment recommended for a particular condition within CFS may be
inadvisable, even harmful, for an M.E. sufferer.
This tangled knotty mess has been largely man-made since about 1988 when the
terms CFS/ME became amalgamated into one, which has been dominantly
"preferred" by influential medical authorities, who also advise governments,
since that time to the present day. It can, however, be unpicked if there is
the will. This Research Psychologist and veteran M.E. sufferer since 1988
(22 years at time of writing) asserts that the following questions must be
answered by anyone advocating particular nomenclature and classification of
illnesses that would affect the treatment that M.E. sufferers would be
recommended to have.
CFS/ME has been interpreted in several different ways: firstly, that the
terms are synonymous and interchangeable; secondly, that M.E. is one of a
number of illnesses contained within Chronic Fatigue Syndrome; thirdly, some
people have been known to use both of these, at different times, to suit the
occasion. Fourthly, there may be other possibilities which we haven't
thought of, though these, of course, could not be discussed unless or until
identified or disclosed.
In the first case, if M.E. is believed to be always, without exception,
synonymous and interchangeable with Chronic Fatigue Syndrome and, if CFS is
the "preferred" term, why do they not drop the term M.E. altogether if no
value is added by keeping it? Many of us suspect that retaining it is an
insurance policy in case a definitive diagnostic test – such as a blood
test, or scan – is ever found for M.E.
In the second case, if M.E. is a subset of CFS, which are any of the other
subsets that we know about and according to which criteria? Why is M.E.
apparently the only one to be taken under its wing, when other conditions
could be made to fit by the same fatigue criteria, for example, CFS/MS?
Indeed, CFS may be so loose a diagnostic term that there is no illness, or
post operative recovery that could not escape its clutches, yet only M.E. is
ever clamped to it.
There is another paradox: retaining the term M.E. while at the same time
disbelieving, or denying its very existence, as some do. Saying the very
initial letters M.E., even if as part of the hybrid CFS/ME, as it appears in
the NICE (National Institute for Health and clinical Excellence) guidelines
for example, is giving M.E. a reality to which it is entitled; yet some
doctors tell patients M.E. does not exist. Despite persistent assertions
that there is no evidence of inflammation to justify the –itis part of its
name, there has been indisputable postmortem evidence from several cases of
people, who had died after having M.E., from around the world, to make it
undeniable. The problem is the lack of universal agreement on similarities
of inflammation, or other abnormal pathology, in people living with M.E.
There is inherent difficulty because absence of evidence of abnormal
pathology does not prove there is none that exists, which has not yet been
found. This is never going to be properly resolved unless we look for it and
there is not the appropriate funding for biomedical research to seek it.
Nevertheless, M.E. is a distinct illness, which can stand alone. There is no
need for CFS, PVFS, CFIDS or any other name as a synonym. Far from being
helpful, using any other term hampers research progress by polluting the
purity of the M.E. data set.
There is a widely held belief that "somatoform" is a creation to enable
doctors to say something rather than admit they do not know. It is not
compelling that, if there is currently no known organic cause of M.E., the
origin must be a psychiatric one, rather than there is yet a physical one to
The second concern of the shift of classification of an illness from being
believed to be of organic origin, at onset, to somatoform, as the illness
progresses, because it is said that the patient is sustaining it due to
faulty beliefs, is controversial and the onus is on those who wish to hold
this theory to prove its precedence over the physiological.
The third concern, dependent on categorisation of illness, by accepted or
assumed authorities, is about implications for treatment. Unsurprisingly,
the people pushing for somatoform classification are predominantly those
whose theories and employment depend on it. It is noteworthy that
psychiatrists are also pressing for a change of classification of M.E. from
neurological to their own speciality in the next version International
Classification of Diseases (ICD) of the World Health Organisation (WHO)
Handbook. The latest review (Twisk and Maes, September 2009) confirms the
findings of all previous research, including that of the same people who
advocate and practise them, that Cognitive Behaviour Therapy (CBT) and
Graded Exercise Therapy (GET) are ineffective and may make M.E. sufferers
worse, yet CBT/GET is the only recommended treatment for people with M.E.
Astonishingly, national and local groups, purporting to represent people
with M.E., are campaigning for more money to expand the service. Ironically,
any slow down in new clinics being opened, or the closure of existing ones,
providing CBT and GET, is for economic reasons due to the current recession,
rather than the medical ones that they do not work or may do harm.
Anyway, the practical evidence is that there is no reduction in the
Department of Health (UK) or Centers for Disease Control and Prevention
(CDC) in the US estimates of approximately 0.2 – 0.4% of the population with
CFS/ME and no significant return to work, school, or a resumption of a
previously normally healthy lifestyle and even more are being added to the
It appears that Chronic Fatigue Syndrome (CFS) is so loose a catch-all
diagnostic term that it is not only hampering research progress for people
with M.E. but every other condition too. This polluted data set must be
cleaned up first before any attempt at reclassification of any of its
components can be contemplated.
Dr John H Greensmith
ME Free For All.org