Alert!: the American Psychiatric Association and CFS

This email came from Phoenix Rising , good source of ME/CFS information.

My understanding is that The American Psychiatric Association is attempting to create a new illness/condition, Complex Somatic Symptom Disorder (CSSD), that many ME/CFS sufferers will be diagnosed.

Coincidently, this move happens when there are shifting general public’s understandings that ME/CFS is a biomedical condition result of biomedical researches.

This “psychiatrist invasion” has already happened in the UK. Dr TL describes this phenomena as “psychiatrists are trying to own the disease”. It gives psychiatrists ultimate power and control (including by-law and involuntary detention) of the patients who are diagnosed with the “condition”.

Most of the illness/diseases that psychiatrists treat don’t have scientific evidence of the illness. They are diagnosed with observation and psychiatrist’s opinion, therefore, it opens a big window of manipulation by the psychiatrists with wrong motives.

The devastating results could be;

• the diagnosis can deny the patient from receiving medical treatment for physical symptoms,
• the diagnosis allows the psychiatrists to ignore the patient’s other biomedical condition,
• the diagnosis can give false rights to healthcare professionals to ignore the patient’s opinion, experience, and doubt about the diagnosis,
• the diagnosis can force the patient to undergo harmful treatment, and
• the psychiatrist have legal power to force the treatment, including the right to detain the patient against their wish.

I’m gobsmacked by the astonishing persistence  by stakeholders of ME/CFS diagnosis (government, psychiatrists, insurance companies, healthcare establishments, and etc.)

The sufferers wish remains the same;

• We want to know,
• We want to have effective treatment,
• We want cure.

Email alert received from Phoenix Rising on 10 June 2011

The American Psychiatric Association is attempting the change the rules of the road in regard to…gulp… diagnosis- the very issue that has bedeviled ME/CFS for so many years. The APA is not attempting to change the diagnostic criteria for CFS…it’s doing something much subtler than that; it’s attempting create a new diagnostic category for psychiatric disorders called Complex Somatic Symptom Disorder (CSSD). A close look at the title itself is enough to give one  a few shivers…

Its ‘complex’ – meaning that it’s not clear – meaning that there’s a lot of wiggle room and we have experience what has happened with wiggle room in the past. Somatic symptoms generally refers to symptoms that are unexplained…..leaving us with a new category focused on ‘complex disorders characterized by many unexplained symptoms’ (Ouch). There is no specific mention of CFS in the definition of the category (altho IBS is mentioned) but one wonders how CFS could NOT fit into here given the lack of clear explanation of its causes and the many symptoms that accompany it.

This APA attempt to change the DSM-5 categories it uses to categorize disease could create a hole, a kind of black hole, in which future researchers could attempt to tumble CFS ( and other poorly explained disorders) into.

What can you do? Submit a request that the APA not create this new category. The hour is late – just six days remain before the deadline for submissions is reached (June 15th) but the path is clearly laid out and the job is not difficult.  You could emphasize that

(a) the highly subjective nature of the definition – which relies on unexplained symptoms and ‘concern’ about them – is too broad and could easily lead to the inclusion of what will ultimately to be found to be non-psychiatric disorders into a psychiatric box -as has happened in the past.

(b) the definition is illogical in its assumption that ‘excessive concern’ after six months of unexplained symptoms is indicative of a mental disorder. This is particularly true in the case of chronic fatigue syndrome which is accompanied by severe fatigue associated with reductions in work, play and social interactions. It would be hard to understand why this set of circumstances in any person would not cause  substantial concern – yet the APA asserts that such concern is enough to fit a person into its new category of mental disorders.

(b) the poor efficacy of the treatment interventions  (CBT) cited in this category suggests that the creation of the category runs the risk of balkanizing research and treatment efforts in a field with reduced upside.

It should be noted that CBT is used both in psychiatric and non-psychiatric disorders to equal effect. CBT’s efficacy in CFS – a disorder whose symptoms would, if interpreted in one manner, appear to meet many of the CSSD criteria – is unclear with the large PACE and FINE trials providing negligible benefit and a recent longterm study reporting negative results.

(b) Given the tendency of the psychiatric profession to mislabel disorders later found to have physiological origins and the damage that has caused to progress in the research arena (and to the patients themselves) we suggest that it is simply not appropriate for the APA to create large categories that rely on ‘unexplained symptoms’.

Instructions on how to submit your response to the APA can be found here http://forums.phoenixrising.me/content.php?438-Coalition4ME-CFS-ME-Call-To-Action-DSM-5-Proposal along with more resources.

Good luck!