Maryann Spurgin Reviews the 2003 ME/CFS Diagnostic Case Definition, M.E. Society of America

Maryann Spurgin, Ph.D., reviews the 2003 ME/CFS Clinical Case Definition

"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols," J of Chronic Fatigue Syndrome, Vol. 11 (1) 2003, pp. 7-116

Bruce M. Carruthers, MD, CM, FRCP(C); Anil Kumar Jain, BSc, MD; Kenny L. De Meirleir, MD, PhD; Daniel L. Peterson, MD; Nancy G. Klimas, MD; A. Martin Lerner, MD, PC, MACP et al.

Reviewed by

Maryann Spurgin, Ph.D.

“Bring down the government; they don’t speak for us.”

                                                            -- Thom Yorke of Radiohead
                                                               “No Surprises”
                                                               On the album OK Computer

     In 1994, a group of government propagandists and psychiatrists on the take from insurance companies created one of the most damaging documents in the fifty-year history of ME/CFS: the 1994 Centers for Disease Control Case Definition. Hillary Johnson was one of the first harshly to criticize the document in her book Osler’s Web, stating that the criteria were too broad and failed to describe the disease with which she and so many of us had been stricken, the disease that caused post-exertional sickness and neurological problems. Instead, it selected heterogeneous fatigue states under the CFS umbrella. This lead to inconsistent research results and inappropriate treatment protocols like cognitive behavioral therapy (CBT) and graded exercise therapy (GET), which caused many patients to become worse.

     It didn’t help that in 1988 Holmes et al. had already renamed the disease “chronic fatigue syndrome” – the term “chronic fatigue” makes it easy for those who wish to lump heterogeneous disorders to do so – but the Holmes criteria had at least made an attempt to define a real, existing disease.

     The 1994 CDC Fukuda criteria, in contrast, made no such attempt. Obfuscation was the goal, and in 1994 an obfuscatory construct was published with criteria that select everything from tiredness to post-traumatic stress disorder to depression to fibromyalgia to myalgic encephalomyelitis (post-exertional sickness and neurological problems) under their umbrella, diseases that have nothing to do with each other. To make matters worse, so-called “patient representatives” like Kim Kenney of the CFIDS Association (CAA) signed onto to the CDC document with no defense of their constituency, marketing the government document as one of the CAA’s “accomplishments.”

     Recently, an excellent criticism of the 1994 CDC Case Definition was published on Co-Cure by Craig Maupin in a five-part article titled “Shaky Foundation,” which I have currently made available under the Advocacy section of the M.E. Society Web site at http://cfids-cab.org/MESA/advocacy.html. I urge those who have Web access to print it for those who do not. Here Maupin argued what Johnson and others had also shown: that the loose CDC criteria can select just about anyone, leading to inconsistent research results and inappropriate treatments for ME/CFS, such as CBT and GET. As thirteen-year-old girls in England with severe cases of ME/CFS lie bedridden on feeding tubes too weak to chew their food, and In Memorium lists in the US chronicle the deaths of ME/CFS patients [see http://www.ncf-net.org/general/memorial.htm], the British psychiatric establishment led by Simon Wessely and his clones continues to exploit these and other poor criteria to obscure the reality of this terrible disease. Wessely also trained and coached Elaine Showalter to publish a book maintaining that ME/CFS is a delusional fantasy akin to alien abduction. American researchers such as Dedra Buchwald also exploit poor criteria to hide from view the disease that causes post-exertional sickness and neurological problems, and recently Leonard Jason promoted poor criteria and the CBT school in a handbook he recently edited.

     Despite the poor selection criteria, some researchers persisted in a sincere attempt to study a disease, M.E. and what I shall call “strictly defined CFS” or ME/CFS, and many excellent scientific findings and articles were produced on the disease that have CFS in the title by researchers such as Drs. Suhadolnik, Klimas, Lerner, Streeten, Rowe, De Meirleir, Simpson, Natelson and others. Describing such pathologies as Rnase-L disorder, cardiomyopathy, low blood volume, neurally mediated hypotension, immune and circulatory disorders, with CFS in the title, these articles were not on post-traumatic disorder, depression, or even fibromyalgia – they were on the disease that causes post-exertional sickness and neurological problems -- and CBT and GET were not advocated as treatments.

     Unfortunately, articles by Wessely, Sharpe, Demitrack, Chalder, Friedberg, and Buchwald also persisted in using CFS in the title of their articles, regularly using poor criteria and selecting patients with other diseases such as depression to argue that CBT and GET are appropriate treatments for ME/CFS.

     What is the solution to this mess? I believe the solution is to have criteria based on research, and to subset ME/CFS according to research findings. Although the Canadian Clinical Case Definition does not yet do this, it comes closer to being research based than other criteria by presenting a comprehensive research review in the definition. The new Canadian Clinical Case Definition was written by top U.S. and Canadian ME/CFS researchers, including Drs. Klimas and Lerner from the U.S. This is a case definition that defines the disease known for fifty years in the literature as myalgic encephalomyelitis but was researched under CFS by doctors such as Streeten, Rowe, Klimas, Lerner, Simpson, Suhadolnik, Natelson, De Meirleir and other dedicated researchers. It combines the very best of the M.E. and CFS literature, employs scientific research articles, and puts them together in an excellent and coherent definition of this devastating disease. It even cites deaths in the M.E. literature from OI patients who tried to maintain orthostasis.

     In sharp contrast to the 1994 CDC Fukuda criteria, which makes "fatigue" a compulsory symptom but downplays and makes optional post-exertional sickness and other cardinal symptoms, the Canadian clinical case definition specifically selects patients who worsen with exercise. The clinical definition makes it very clear and compulsory that in order to meet the diagnostic criteria, the patient must become symptomatically ill after exercise, and must also have neurological, neurocognitive, neuroendocrine, dysautonomic (for example, orthostatic intolerance), and immune manifestations. That is, worsening with exercise, and many symptoms other than fatigue, must be present for a patient to meet the diagnostic criteria. This case definition will go a long way to help distinguish ME/CFS patients from chronic fatigue patients, depressed patients, patients with PTSD, somatization, fibromyalgia, and other diseases with which ME/CFS has been confused, including those that improve with exercise. The Canadian definition specifically states that patients "become worse after exercise rather than better." This counters the view being put forward by persons such as Wessely and Chalder, who hold that the disease is an unexplained interpretation disorder and behavioral problem leading to deconditioning for which CBT and GET are effective treatments. The new case definition, much of which is backed by research and hard science, is a strong counterstatement to the view held by these psychologists and psychiatrists.

      Three parts of this case definition are excellent: the diagnostic protocol, the research overview that medically explains – yes, that’s medically explains – symptoms in terms of the current research, and an excellent three-page criticism of the CBT/GET studies. With the Wessely propaganda spreading like wildfire, I commend these researchers for having the courage to criticize what they call the “value-laden” CBT/GET studies.

     However, I found the treatment section in this definition to be weak. After spending pages arguing that the disease causes post-exertional sickness and criticizing the CBT/GET studies, the treatment section suggests exercise (although very light, as in a ten- minute walk). Although it does not suggest exercise for all patients, I think this section should have been shortened and better organized into degree-of-illness subsets and protocols, and the case definition should have mentioned that in the clinical setting, completely bedridden patients will appear who can barely move, like the cases of Stephen Paganetti or Dr. Naomi Weisstein. The definition recommends activity, not within one’s limits, which is called “pacing,” but pushing “gently” beyond one’s limits and then monitoring “for signs of relapse.” Suggesting activities that produce relapse is bad advice. The drug treatment protocol section is also weak. The case definition also should have mentioned the debilitating neuropathic pain that is so common in the disease, and I believe that the case definition overemphasizes muscle pain and overemphasizes the connection between ME/CFS and fibromyalgia. Also, the case definition fails to recognize that many patients who were extremely athletic before becoming ill became more debilitated after contracting the disease than those who were not athletic. In other words, one’s degree of athletic ability before becoming ill has nothing to do with post-illness exercise capacity, and often sedentary persons become less ill than those who were athletic. In some of the outbreaks, the bedridden hospital patients were the only ones to escape contracting the disease.

     All in all, however, this is an excellent case definition that in most sections very accurately describes the true nature of the disease. Because it is one of the few documents that seriously attempts to understand the disease, it affords us all an excellent opportunity to promote it and to argue either for the revision of the CDC case definition or for the recognition of the disease that causes post-exertional sickness and neurological problems, which has gone unrecognized by the government. I have made this case definition available on the M.E. Society Web site at http://cfids-cab.org/MESA/ccpc.html, excluding the weak treatment section. I urge every patient to present a copy to his or her doctor.

     This clinical document is not propaganda; in most instances, it speaks for those who genuinely have the disease.

© 2003 NCF