She is NJCFSA's representative to CFSAC; NJCFSA is a non-voting patient advocacy member of CFSAC.
Her son, Eric, had ME for 20 years and died in 2011.
It is not too late to submit comments to the IOM Committee. Send your comments to: firstname.lastname@example.org
Reprinted with permission.
COMMENTS REGARDING THE ME/CFS DEFINITION STUDY for the public record.
To: Institute of Medicine Panel Members, Diagnostic Criteria for ME/CFS
From: Billie Moore
New Jersey Chronic Fatigue Syndrome Association Advocacy Chair, speaking for myself.
Date: January 22, 2014
It is important to mention once again that the IOM has embarked on a study to determine the definition for Myalgic Encephalomyelitis, often called Chronic Fatigue Syndrome or ME/CFS, when the recommendation of the HHS’s Chronic Fatigue Syndrome Advisory Committee specifically called for the adoption of the Canadian Consensus Criteria definition (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition: Diagnostic and Treatment Protocols) rather than a new study.
Fifty experts in the field of ME/CFS also urged the adoption of this CCC definition and the abandonment of this expensive, time consuming and unnecessary study being undertaken by the IOM. (Fifty experts, it must be noted, is a large proportion of experts in a field with very few knowledgeable practitioners and researchers, unlike most disease fields in medicine where the patient population is over one million in the U.S. alone.) And 170 patient advocates urged the same.
The advice and urging were ignored by the HHS, and here you are.
Since the study is moving forward, I will address my comments to what is a key issue – whether ME is a subset of CFS or whether ME is a separate disease. First, a brief history.
The disease was first called ME in the 1980’s and was subsequently changed to CFS, with a very broad definition including depressive and other psychiatric symptoms included. The Fukuda definition of 1994 did not improve on prior definitions, and significantly did not require that post-exertional neuroimmune exhaustion (PENE) be present for a diagnosis of CFS. (See the International Consensus Criteria definition.) It also required a six-month waiting period before a diagnosis of CFS could be given, a time-requirement no other disease requires. The Canadian Consensus Criteria, which has been recommended to be adopted by CFSAC, was developed in 2003 by ME/CFS experts.
The term ME/CFS was also developed in the mid-2000’s because patients and expert physicians alike recognized that “chronic fatigue syndrome” was a vague, diminishing name with strong overtones of “it’s all in your head.” The joint name, ME/CFS, is now used by many patients and patient groups and much of the Dept. of Health and Human Services. It is still not correct, however.
What has emerged from these decades of misnaming and sloppy defining (prior to the CCC) is confusion and incorrect diagnoses which included those with psychiatric problems. Four possibilities exist regarding the two terms, ME and CFS:
1. Either these two terms define the same illness; or
2. ME is a subset of CFS; or
3. ME and CFS are two entirely different diseases, or
4. the term “chronic fatigue syndrome” is a false construct and invalid.
To address the possibilities listed above I start with #4 and state that “chronic fatigue syndrome” does not exist. It is too vague and imprecise a name for a disease with many discrete and measurable symptoms. (You should have in your packet of reading materials a table called, “Myalgic Encephalomyelitis (ME/CFS) Table of Biological Abnormalities, Clinical/Lab Tests and Drugs with Potential for Repurposing” which gives an outstanding overview of abnormalities of the disease we are trying to properly define.) However, because CFS has been in the literature for 25 or more years as a result of the naming in the 1980’s and 1990’s and definitions mentioned above, there is a logical hesitancy to chuck it into the medical wastebasket. But “CFS” must be chucked, and it is my hope that those on this panel will do away with “CFS” and its poor definitions and properly define the disease which is well defined in the CCC and ICC definitions.
#1 and 3 follow from #4. CFS is a falsely created and defined set of imprecise symptoms; therefore, it is not the same as ME. It is also not a disease that is different from ME. It is not a disease at all.
Number 2 will take some of your time in discussions, I am sure. However, if you can consider that #4 is true, it, too, becomes a non-possibility: ME cannot be a subset of a non-disease.
Nevertheless, let me address this point. For 25 or so years this disease has been called chronic fatigue syndrome. Very likely the majority of patients who have been diagnosed with CFS as far back as the 1990’s meet the ICC definition of ME. (At least three studies have shown that this is the case.*) Why were those patients diagnosed with CFS and not ME? Simply because that while their symptoms met the criteria for ME, ME was not being used as a label in the U.S. until the mid-2000’s. Their symptoms had not yet been listed and explained properly until the CCC came along; everything was called CFS. The CCC definition refers to ME as “sometimes called” chronic fatigue syndrome and adopts the combination name, ME/CFS.
However, what has evolved somehow is the thinking in some quarters that ME is a subset of CFS. No. Some patients have been diagnosed with CFS who do not have ME because of the overly broad CFS definitions still in use (Fukuda, Reeves). But what they really have is unknown because they do not meet the criteria for ME, and “CFS” doesn’t define anything accurately.
“Chronic fatigue syndrome” is not real. It is a false construct. It is a name that prevents a proper diagnosis of the real disease. ME is a neurologic and immune disease with distinct and measurable abnormalities. ME is not a subset of this oddity “chronic fatigue syndrome.” Please dispense with it and adopt the CCC or ICC definitions, the latter being the more up-to-date and comprehensive of the two. At long last, give this devastating, life-robbing disease a proper name and definition that can be used with confidence by experts and non-experts alike to diagnose and treat it.
*1, Jason, L.A., Brown, A., Evans, M., Sunnquist, M. , & Newton, J.L. (2013). Contrasting chronic fatigue syndrome versus MyalgicEncephalomyelitis/chronic fatigue syndrome. Fatigue: Biomedicine, Health & Behavior, 1, 168-183.
2, Jason, L.A., Sunnquist, M., Brown, A., Evans, M., and Newton, J.L. (in press). Are Myalgic Encephalomyelitis and chronic fatigue syndrome different illnesses? A preliminary analysis. Journal of Health Psychology.
3. Brown, A. A., Jason, L. A., Evans, M. A., & Flores, S. (2013). Contrasting case definitions: The ME International Consensus Criteria vs. the Fukuda et al. CFS criteria. North American Journal of Psychology, 15(1), 10