WHERE DOES THE CDC LEAVE YOU AND ME? By Donna Sumner
From Spring 2009 Forum
One research team from DePaul University published "Evaluating the Centers for Disease Control's Empirical Chronic Fatigue Syndrome Case Definition" in the Journal of Disability Policy Studies in late 2008. Supposedly, the CDC came out with this new criteria to "bring more methological rigor to the current CFS case definition". This study to evaluate the criteria by Jason, et al., used participants who already had a diagnosis of "CFS" along with a group that had a diagnosis of Major Depressive Disorder (MDD) and found that 38% of those with MDD could be misclassified as having CFS when the new CDC's Empirical Definition was used.
The CDC's new definition was published in BMC Medicine in 2005 by William C. Reeves, Dietary Wagner, Rosanne Nisenbaum, James F. Jones, Brian Gurbaxani, Lau Solomon, D. Papanicolauou, Elizabeth Ug, Suzanne D. Vernon, and Christine Heim. It is important for all to understand that this new definition uses psychological testing and the authors listed include the new scientific director of the CFIDS Association of America (CAA). I've underlined her name to make it easier for my readers. It is also important to understand the CDC excludes those patients from their criteria with both ME and CFIDS as quoted in the last edition of The National Forum: "ME is accompamied by necrologic and muscular signs and has a case definition distinct from that of CFS" (Overview of CFS, WB1032, CDC, Department of Health and Human Services. Continuing Education). What they leave out is the fact that all the authors mentioned above decided to eliminate the diagnostic code for ME (myalgic encephalomyelitis) before they published this new definition. So where does that leave you and me?
Dr. Jason and his team looked only at MDD because it has overlapping symptoms with CFS that include chronic fatigue, sleep disturbances and poor concentration. Their sleep disturbances can lead to pain which makes it "possible that using this broadened new CFS empirical case definition" would allow people with a primary affective disorder to be diagnosed with CFS. "However, several CFS symptoms, including prolonged fatigue after physical exercise, night sweats, sore throats, and swollen Iymph nodes, are not commonly found in depression" and "individuals with CFS can also be differentiated from those with depression by recordings of skin temperature levels and electrodermal activity" along with many other symptoms which concludes that "CFS and depression are two distinct disorders, although they share a number of common symptoms". So where does that leave you and me?
There were other differences that Dr. Jason found such as more of those with a CFS diagnosis were on disability when compared to the MDD group. But they did find 87% of the MDD patients had chronic fatigue. Now the CAA is protesting that the CDC is studying "fatiguing illnesses" yet their own scientific director helped to author this debacle before they hired her at a lofty salary. By doing this, the CAA helped to broaden the definition and had to be fully cognizant of that fact. It's like catching a thief in your home and hiring him to be your personal security guard! This plays into the psychobabble group that "continue to believe that CFS should be considered a functional somatic syndrome". The CDC uses this new definition in their research studies and Dr. Jason's paper only looked at MDD but felt many mental illnesses could also fit the new definition resulting "in the erroneous inclusion of people with primary psychiatric conditions in CFS samples." Where does this leave you and me?
Well, if you have neurological symptoms, it leaves you out of "CFS" according to the CDC. CFIDS/ME patients have attention deficits, calculation difficulties, memory disturbances, special disorientation, frequent and unusual nightmares, night sweats, nocturnia, nonrestorative sleep, headaches, dizziness, visual blurring, numbness or tingling, disequilibrium, light headedness, difficulty moving their tongue to speak, ringing in the ears, intolerance of bright lights, intolerance of alcohol, twitching muscles, and an alteration of taste, smell and hearing. Those are all neurological symptoms of ME. There are many more I haven't listed such as seizure disorders that can go on a list of necrologic symptoms. But the CDC no longer allows anyone in the US to be diagnosed with ME. Where does that leave you and me?
The CDC, in 1988, renamed this disease from the erroneous name of Chronic Epstein-Barr Virus Syndrome. In the petition to have our government recognize ME (www.petitiononline.com/MEitis/petition.html), Sue Lyon was number 8,438 to sign and she wrote," The name 'Chronic Fatigue Syndrome' belittles patients and has done incalculable harm to patients and their families. It dishonors everyone who suffers from this syndrome as well as their friends and families who have watched them go through the pain of losing their previously vibrant lives." Is your name on the petition? If not, where does that leave you and M.E.?
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606