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.

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, there are over 4,000 articles in peer-reviewed medical journals showing frank biological pathology in ME. (Reilly 2011)

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.

Submission from Peter Kemp, UK advocate http://dxrevisionwatch.wordpress.com/

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