10 good reasons why ME should not be labelled as a Functional Somatic Syndrome (FSS)
10 good reasons why ME should not be labelled as a
Functional Somatic Syndrome (FSS)
Greg Crowhurst March 2012
(Permission to repost)
This article is written in direct response to the terrifying situation in Denmark, where Severe ME suffer
Karina is under threat of being forcibly removed from her home and place in a
mental asylum because the Danish Board
of Health is working with a "well-known Danish psychiatrist" , who has never actually seen Karina, but is
seen by the government as an authority for “functional somatic syndromes” so they are acting upon
his advice.
his advice.
What is a Functional Somatic Syndrome (FSS) then ?
A FSS is defined as a condition
which “after appropriate medical
assessment, cannot be explained in terms of a conventionally defined medical
disease”. Functional Somatic Syndromes
are argued to have the following in common :
an apparent
overlap of symptoms (e.g. fatigue, headache);
patients with
one syndrome frequently meet the diagnostic criteria for others (e.g. CFS and
IBS);
patients with
these syndromes share non-symptom characteristics, such as relatively high
rates of emotional distress, the “predominance” of women, a history of child
abuse and difficulties in the doctor-patient relationship;
all functional
syndromes tend to respond to the same therapies (e.g.
CBT/exercise/antidepressants).( Goudsmit and Doorduin 2000)
10 good reasons why ME should not be labelled as a
Functional Somatic Syndrome (FSS)
1. Myalgic Encephalomyelitis (ME), has been classified by
the World Health Organization (WHO) as a neurological disorder since 1969.
Currently it is listed in the International Classification of Diseases (ICD),
chapter 6, under Disorders of Brain at ICD-10 G 93.3. It is not classified as a
mental health disorder.
Goudsmit and Doorduin
(2000) ask in relation to FSS : Does
anyone know of an instance where our knowledge of disease progressed as a
result of lumping disorders together and ignoring their differences? We don’t….On
what basis?"
2. The burden of proof is always upon the clinician to show no "demonstrable
tissue abnormality" , if they cannot then FSS is no better than "specious
speculation”. As Dr English goes on to
state: " Absence of evidence
must not be confused with evidence of absence... absence of evidence may reflect
insufficient research, inadequate technology, poor methods, flawed paradigms,
closed minds, or lack of clinical experience; for example, in 1980, there was
no clear evidence that AIDS was viral - blood products were
considered ‘safe'. Dr English (Letters responding to Wessely et
al. Lancet 1999, 354, 2078-9.)
3. The existence of an illness is not dependent on a
reliable, objective marker to identify the condition, or upon knowledge of
aetiology. As Drs Bell and Lapp state : “We
accept the existence of a migraine despite the lack of blood tests or x-rays
that prove its existence.” In any case the assertion that there are no markers to
identify or study ME is incorrect. Bell and Lapp note that “unfounded
opinions can lead to cutbacks in research funding, erect obstacles to published
research, and increase the difficulties of patients who seek compassionate
medical care.” In these cases, “the
authors would be committing gross malfeasance, harming both the medical
community and the patients to whom they are dedicated to serve”. (Bell and Lapp. Letter to
the editor of the Annals of Internal Medicine. Newsletter AAFCFS, Aug/Sep.
1999.)
4. Much of the evidence supporting the
concept of FSS relies on "generalisations
and some deeply flawed research. " It is unclear how
the evidence base for FSS manages to unearth so many studies supporting
psychiatric explanations for disorders like ME
and PMS and virtually none showing that biological factors play a major role.
. (Goudsmit and Doorduin 2000)
5. The "lie that
there is no known medical pathology" in ME is the foundation of a diagnosis of FSS. According to Anthony Komoroff, Professor of
Infectious Disease at Harvard
Medical School
6. In terms of ME , a
diagnosis of FSS also seems to miss all the studies challenging the
effectiveness of CBT/GET etc. (Goudsmit
and Doorduin 2000)
7. Science demands precision and that effectively rules out umbrella terms like FSS. (Goudsmit and Doorduin
2000)
8. The mislabelling of patients with ME as having FSS , in the
current climate, is highly irresponsible , because it undermines the possibility of physical investigations , and so
endangers people's lives. It is wrong for people with ME to be given a mental
health label that is the equivalent of being called a ‘hypochondriac’.
(cf Kemp 2012)
There is clear evidence that ME is not the same as
depression or any other psychiatric disorder. It is wrong to label people with Severe ME, who have profound
multi-system dysfunction as having a mental health disorder.
9. A diagnosis of FSS is a serious matter as M.E. is classified by the WHO ICD as a neurological illness. A
doctor whose diagnosis of ME is then contradicted by a doctor that diagnoses FSS,
could perhaps lead to a legal challenge. The implications to the proper care of a
patient, due to misdiagnosing a serious neurological illness as a neurotic
illness hardly bear thinking about. Hindering necessary investigations and
treatment might only be a small part of the problems this might create. (cf
Kemp 2012)
10. The question of what a
Functional Somatic Syndrome is has never explicitly been addressed or answered. The adding of the word "functional"
to "somatic" blurs the
boundary between physical disease and mental health issues, leading to people
being wrongly labelled and mistreated. The adding of the term "function" to
the term "somatic" leads to the systematic denial of the physical
causes of ME. It is a very dangerous game to be playing.
As Dr Komaroff argues : " The symptoms of these "functional" illnesses probably have
biologic underpinnings, even though the articulation of a patient's suffering
clearly is influenced by personal experiences and cultural values. Although we
are a long way from identifying the precise pathophysiology of these illnesses,
there is considerable evidence that they have an underlying biologic basis. "(Komaroff
2004)
The involvement of psychiatry in ME, has lead
to a situation where physical causes are not sought and even argued
against or positively proscribed. The tests required to prove the disease are
not being widely offered , developed or easily developed.
People with ME are trapped in a cycle where their physical
disease is denied and where this is seen as
justification of an FSS label. It is the
perpetrators of the psychosocial paradigm
who have helped create this nightmare environment, by their
misinterpretation of ME.
The last thing anyone with genuine neurological ME needs is
a mental health professional , with a psychosocial agenda determining their
treatment, or being involved in their diagnosis.
A psychosomatic interpretation of ME creates a chicken and egg situation where you
have to have the tests to prove you are ill, but the psychiatrists have denied you those tests , so you will not have the proof to prove you
are ill. Yet wanting to
have the tests or being concerned about your health, because of your symptom severity,
is seen as "maladaptive thinking" and proof of FSS; in that sense a
diagnosis of FSS, sets up a vicious self-fulfilling circle, endangering the
lives of people with ME, especially the most severely affected.
In the current climate where people with ME are in danger of being treated behaviourally
rather than medically , patients with ME are massively at risk of having their physical
reality denied.
The only thing that will keep patients with ME safe are
biomedical tests that will prove there is physical dysfunction and accurate
biomedical interpretation . Yet this is currently denied the vast majority of
patients with neurological ME.
References :
Goudsmit E (2000) Is CFS a functional somatic syndrome? http://freespace.virgin.net/david.axford/cfs-fss.htm
Haywwod S (2011) The Psychologist: Functional Somatic
Syndrome ME is a "Costly Conundrum" http://www.mecfsforums.com/index.php?topic=8186.0
Kemp P (2012) DSM-5 Somatic Symptoms Work Group submissions
2012: Last chance to tell SSD Work Group why it needs to ditch flawed, unsafe
and unscientific proposals.
Komaroff A (2004) book review: Functional Somatic Syndromes
N Engl J Med 2004; 351:2777-2778, Dec 23, 2004. Book Reviews http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=498544
Reilly J (2011) The Psychologist: Functional Somatic
Syndrome ME is a "Costly Conundrum" http://www.mecfsforums.com/index.php?topic=8186.0
Yep. Although the headline implies that other diseases should be labelled FSS. Maybe they should, but I'd like evidence other than "We can't find anything else."
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