Recently, I received an advocacy alert from one of my various CFS/ME groups, concerning the possible inclusion of CFS in the newest version of the DSM. The DSM - Diagnostic and Statistical Manual of Mental Disorders - is the American Psychiatric Associations' guidebook when it comes to mental illnesses, and the idea that there would be a category under which CFS might (or could realistically) be grouped is terrifying. It's a huge step backwards in the fight for funding, understanding, treatment, and all of the other things patients with CFS often don't have the energy (or time, or resources) to continue to battle without end.

I took a while to craft a letter I felt managed to point out all of the issues that are inherent in such an inclusion, while also trying really hard not to abelist towards mental illnesses and their severity either: I really didn't want to say "Don't call us crazy!" and expect that that would be a worthwhile argument. It isn't - crazy is a word I'm trying to erase from my vocabulary, in the first place, but in the second, there's nothing worse about being mentally ill than there is about having any other form of chronic illness. So I didn't want my letter to make it seem as if I were saying, "Well, we have all these issues, but we're still better than that": Instead I wanted to make clear that having a classification that could include CFS (and, as you will see in my letter, just about any chronic illness) is a setback because it does not allow for a true understanding of our disease process - and that can have dire consequences. At least, that's the point I hope I was making... I'm open to (constructive) criticism, if you have any before Monday, which is the deadline for comments on this particular version of the diagnostic criteria.

I'm writing to express my concern about the possible inclusion of Chronic Fatigue Syndrome as a "functional somatic syndrome", under the newly created category of Complex Somatic Symptom Disorder in the DSM-V.

First, I take issue with the vague and almost universally applicable criteria under which the CSSD could be diagnosed. Symptoms like
"A belief in the medical seriousness of their symptoms despite evidence to the contrary"; "Normal bodily symptoms are viewed as threatening and harmful"; "High level of health-related anxiety; "A tendency to assume the worst about their health (catastrophizing)"; &"Health concerns assume a central role in their lives." are so ambiguous as to be useless. Under this criteria, I would say that ANY chronic illness could be included as a somatic disorder. If you have heart disease, your "health concerns" will - if you intend to survive - most likely assume a "central role" in your life, and many previously "normal" symptoms could now be considered as potential threats. If you are diagnosed with cancer or HIV, I'm going to assume that a certain amount of "catastrophizing" would take place - there have been numerous books written about how a diagnosis of such an illness is not a death sentence: Would there be a need for those books if people didn't automatically assume that certain illnesses could mean the worst for them?

Creating this new category is to dismiss the very real worries and concerns of ANY patient, with ANY illness: It fails to take into account that, when confronted by an illness you cannot predict, you may sometimes become discouraged, fear the worst, or wonder if your newest ache or pain will be as devastating to your life as the previous one was. It takes what is human about a patient - the fact that they might make mistakes, or become anxious about something that is having an intense impact on their life - and turns it into something that is abnormal, something that should be seen as an illness. In so doing, you erase the humanity of all individuals with chronic illnesses.

If you fail to see that some of these behaviors - for example, having a high level of "health-related anxiety" - can, in fact, be positive coping mechanisms, you are invalidating the needs of a chronically ill patient. If a patient is proactive - if she sets a schedule for taking her meds, follows a nutritious diet, incorporates periods of rest and exercise as needed throughout the course of her day, & keeps up on the newest treatments and research regarding her disease, then yes: it is fair to say that "Health concerns are a central role in her life." However this is only to her benefit, and EXACTLY what doctors advise their chronically ill patients (and, with specific changes, their well patients) to do, no matter what their diagnosis might be. And yet, you plan to classify that as yet another symptom for a "disorder" that has no real medical definition. With "symptoms" so broadly and subjectively defined, the potential for misdiagnosis, and abuse towards patients whose illness are atypical, medically complicated, misunderstood, or rare is extremely high and frustratingly preventable...by simply excluding such a code, which would likely do more harm than good.

What other forms of harm, besides the very real danger of ignoring the physical deterioration of a patient due to misdiagnosis, might occur? Consider a recent study out of the Netherlands, which concluded that it is "unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as Cognitive Behavior Therapy and Graded Exercise Therapy", two of the most widely used therapies for ME/CFS in the UK, and both recommended treatments for various current forms of somatoform disorders, or the fact that most SSRIs (which are also considered applicable treatments for somatoform disorders), tend not to be effective in treating CFS, and carry the risks of many serious side effects.

Somatiziation is the physical expression of psychological symptoms, and for the APA to claim, as experts and medical authorities, and with no room left for doubt, that the symptoms of CFS begin as psychological is not only to contradict the World Health Organization (which classifies it as neurological in basis), but also the US Centers for Disease Control (which stated, in 2006, that "There were no other factors, psychological or biological, that held up under thorough analysis"). It ignores the fact that in the UK ME/CFS patients have been banned from donating blood for over 20 years, that they were recently prevented from doing so in Canada, and that they are actively discouraged from doing so in the US. It also does not reflect a complete understanding of most of the current scientific research including viral implications, numerous biomarker studies; studies with immune system findings, neurological findings, CNS findings, genetic findings; and the complexity and interconnectivity of a disease like CFS. And it ignores the voices of the many experts and medical organizations focused on CFS research, including, but not limited to: Drs. Bell & Cheney, Dr. Komaroff, The Whittemore Peterson Institute, Dr. Klimas, & many others, who continue to search for the cause, treatment, and possible cures for this horrible disease.

I fail to see why, when biological science is stumped (or, in the case of CFS, more likely just ridiculously underfunded), putting the blame in the heads of patients is considered an acceptable solution. To include a definition of CSSD that could be applied to conditions like Chronic Fatigue Syndrome or Fibromyalgia is to forget the long - and embarrassing history - of unjust accusations of patients - or patient's families - "creating" their own illnesses - In the not too distant past, mothers were blamed for Autism, Type A personalities were blamed for causing ulcers, and both Multiple Sclerosis and Epilepsy have long been tainted by the incorrect assumption that they were caused by patient behavior.

Also important to note is the disconnect between medical science's understanding of men's bodies (and, therefore, diseases that are more likely to strike men) vs medical science's understanding of women's bodies (and, therefore, diseases, like CFS and FM, that are disproportionately more likely to affect women). From the fact that the term "neurasthenia" (aka "the vapors") - a term which the DSM itself tossed out years ago - is still being used in the UK to label CFS patients, to the woefully inadequate funding and research into diseases that have high populations of female patients, and how this would only contribute to the misuse of a CSSD coding.

I wish to be clear; Of course, for any person, chronically ill or not, there can be physical effects of psychological stress - You have only to suffer through one tension headache or witness a child so nervous that he loses his breakfast to know that this is true. But to state categorically that all of the symptoms of CFS patients (which can include sore throats, chronic infections, post-exertional fatigue, abdominal pain, unrefreshing sleep, irregular heartbeat, vertigo, muscle and joint pain, mental confusion, tender lymph nodes, allergies, night sweats, hypersensitivity to light, sound, smells, heat or cold, abdominal pain, blood pressure problems, and many, many more) can - definitively - be attributed to psychological factors, is to propose and support a falsehood.

I'd also like to refer you to a recent "Submission Re: DSM-V and ME/CFS" compiled by Professor Malcom Hooper and Margaret Williams of the 25% ME group (submitted 3-20-10) for an enlightening discussion about who would benefit from the inclusion of CFS as a CSSD, and the conflicts of interest evident in the DSM-V Somatic Symptom Disorder Work Group. (This work also includes a good summary of why the criteria are "so wide & non-specific that they have little clinical utility,"which I have already discussed.)

In conclusion, I urge you to consider the consequences of such an inaccurate and regressive inclusion - the potential for misuse/abuse/overuse of a non-specific coding for millions of affected patients; years of unhelpful and potentially dangerous drugs and therapies for patients who go to their physicians looking for answers; further & inhumane setbacks in the search for the real illness that is affecting these individuals, as well as the research that is necessary to find a cause, treatment & cure; and putting the DSM-V on the wrong side of medicine (and eventually, history).

I appreciate you taking the time to read my thoughts and concerns, and hope that you will take them into consideration as you make your final recommendations.

Sincerely, etc etc.

You can find the full criteria Here, as well as a link to where you can submit your own comments.