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Susanna Argady comments on the DSM-5

Monday 20 June 2011

From Susanna Argady (via email):



My submission to the DSM-5 Work Party,
Best wishes, Susanna

As an individual who is severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and one who observes events surrounding this condition I offer my comments on the proposed CSSD criteria.

The description of CSSD strongly reflects the spirit of the Wessely school in relation to ME/CFS and appears to be aimed at any medical condition which has not quite attained medical legitimacy in the eyes of many practitioners. Unfortunately, ME/CFS falls into this category and is being placed at risk by these criteria of being further entrenched in this position.

The proposed criteria rely on the prejudice of the practitioner for a diagnosis of CSSD and for the conclusion that the patient’s reaction to symptoms is unreasonable. The criteria are equivocal and pathologise patient beliefs and behaviours which are rational in their context and may serve the survival of patients. For example:

  • ‘Some patients feel that their medical assessment and treatment have been inadequate.’ Indeed, very often these are inadequate. This is true not only of ME/CFS where it can take years to get a diagnosis, but also of other conditions, as the Work Party would be aware. Lack of diagnosis may be due to limitations in medical knowledge and the health system. However, pathology for being a ‘nuisance’ case is attributed to the patient. With the already successful penetration of the medical profession by anti-dualist influences a report of many physical symptoms can elicit an on-the-spot diagnosis of anxiety or depression from a doctor (even when there is no sign of either), possibly hindering proper diagnosis and treatment and perpetuating the search for them, leading to a ‘high level of medical care utilization’. Some guidelines on ME/CFS specifically recommend against more advanced medical tests once an ME/CFS diagnosis has been given. Thus, they obstruct the discovery of so far undiagnosed disease. All of this can lead to distress which is then further pathologised.
  • ‘…many of these patients seem unresponsive to therapies’ and new interventions or therapies may only exacerbate the presenting symptoms or lead to new side effects and complications.’ No doubt this can apply to many difficult medical conditions. Why would this constitute a psychopathology when it could be due to the failings of diagnosis or inappropriate treatments?
  • While some patients may have a ‘maladaptive response to symptoms’, in ME/CFS it has often failed to be recognized that patients’ responses are driven by their underlying conditions and symptoms. It is therefore wrong to imply that a patient has a choice in their response, for example, when the patient rests instead of increasing activity. For the same reasons the patient may show ‘poor adherence to medical recommendations’. The recommendations may be simply inappropriate and reflect ignorance of the patient’s underlying condition. Patients owe it to themselves to avoid inappropriate and harmful treatments.
  • ‘Health concerns may assume a central role in the individual’s life…’. Of course they do! When a chronic health condition has caused the loss of work, a reasonable income and a social life, as well as causing pain and suffering, what would you expect? Such statements fail the reality check. This statement is also made when the practitioner reverses the cause-effect sequence of events in the patient’s life, and so attributes poor health outcomes to ‘undue’ health concerns (translated to ’dysfunctional beliefs’) instead of the patient’s medical condition.
  • CSSD criteria rest on the use of words such as ‘excessive’ and ‘disproportional’ which rely on a subjective interpretation: excessive and disproportional in relation to what? How can the diagnostician be certain that they have excluded all serious disease states? Surely, the validity of these labels can only be determined in relation to the kind and severity of the patient’s condition and its symptoms. Sophia Mirza, a 32 year old diagnosed with ME who died as a result of it, was bedridden, debilitated and sensitive to many things. She was brutally interned in a mental hospital by her psychiatrist for her refusal to do CBT/GET. Her post-mortem showed that she had inflammation of the spinal cord - dorsal root ganglionitis which ultimately led to her death. Her behaviour was evidently thought to be a ‘maladaptive response’, excessive, etc. Since the condition she experienced was so serious that it was fatal, her perception could not be said to be ‘unduly threatening, harmful, or troublesome’ or disproportionate. Her condition was threatening, harmful and troublesome in the extreme. While her psychiatrist could not have known her precise underlying condition, a respectful, scientific open-mindedness in the face of her symptoms would have avoided his arrogant blunder. While her disease was more extreme than the condition of most sufferers, there are many others debilitated with ME/CFS exposed to poor diagnosis and potentially harmful treatment.

As the Work Party would be aware, diagnosis of SSD or CSSD can itself lead to further distress. This can happen firstly, because the diagnosis is inappropriate, replacing a biomedical one and can result in the patient being deprived of the opportunity to receive a more precise diagnosis and treatment. Secondly, its manner of application too often invalidates the patient. Thirdly, it carries stigma even in medical settings and is a short step from accusations of malingering which can lead to maltreatment.

It is difficult to see how expansion of the coverage of CSSD and using it as an add-on diagnosis would advance the welfare of patients. Why is the Working Party so enthusiastic to capture a wider range of conditions under the classification when there is no effective treatment for these conditions? On the other hand, patients sometimes improve, without psychiatric intervention. Their distress is alleviated too. In the meantime, of course, patients need proper support and need to avoid harmful treatment.

The proposed CSSD criteria are so wide and the report so imprecise that reading this document is not unlike trying to carry jelly in a string bag. The dedication to eliminating dualism seems to create only confusion. The description is unscientific and in circular fashion confirms its own assumption that there is no disease state involved. Diagnosing the symptoms listed as pathological would not make sense without this assumption. When a biomedical condition is present the use of such criteria pose a hazard to patients.

The criteria lend themselves to arbitrary and capricious use. There is already a history of these types of criteria being wrongly applied to ME/CFS and these misdiagnoses continue even in the face of the growing evidence of biomedical conditions. ME/CFS patients have already experienced the harm that such descriptions can do.

Who benefits from this proposal? Not the patients.

The CSSD proposal should be withdrawn.

Susanna Agardy


Submissions and comments to the DSM-5:

www 13 June 2011:  Open letter: Submission about the creation of a new category
www 15 June 2011:  Mary Schweitzer letter to APA on CSSD proposal for DSM-5
www 16 June 2011:  Fred Friedberg's comments to the DSM-5 Work Group on Somatic Symptom Disorders
www 17 June 2011:  ME Association submission to the DSM-5
www 18 June 2011:  European ME Alliance submission to DSM-5 draft proposals
www 19 June 2011:  Comment by Dr John L Whiting to the DSM-5
www 20 June 2011:  Susanna Argady comments on the DSM-5
www 21 June 2011:  DSM-5 web site period for comments extended



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