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Mike Munoz -  Written Testimony to the CFS Advisory Committee -  11/9/2011

I am executive director of the Rocky Mountain CFS, ME and FM Association, on the Steering Committee for the coalition 4 ME/CFS and I am a 15 veteran in the ME/CFS patient population. I am speaking on behalf of the Coalition who was not given time to speak during the ICD-10-CM session yesterday morning. The coalition submitted the proposal to NCHS to have CFS restored to G93.3, “Diseases of the nervous system” as it is in the World Health Organization’s ICD-10.

The Coalition 4 ME/CFS is nine member organizations who are dedicated to improving the quality of life for patients with ME/CFS and other NeuroEndocrineImmune Disorders. For years, the CFSAC and other experts in the US noted that the classification in the ICD clinical manuals in the US should be restored to match the WHO ICD-10 including 3 CFSAC recommendations dating back to 2004 with no action. The Coalition 4 ME/CFS with the dedicated efforts of Mary Dimmock stepped up and presented a scientific proposal to make sure that another CFSAC recommendation did not go unfulfilled.

I am now using my testimony time to clear up some issues on this proposal

First, this is a scientific proposal backed by years of research studies and reviewed by over a dozen experts in the ME/CFS community. This was quite the feat given the 6 week timeline between the May CFSAC meeting recommendation and the July 15th deadline for submission. This following up on our initiative for public action on the DSM-5. We also have support from several organizations and key individuals outside the coalition for the coalition proposal. NCHS put out option 2 within 48 hours of the July 15th meeting and the coalition was not granted input on their concerns.

Second, I want to make clear that CFS is already classified in the index area of the WHO ICD-10 under G93.3. We are demanding that the US come in line with the rest of the world and that the reclassification be expedited because patients have waited long enough. The world is an international community, ME/CFS is an international disease and we need international solutions. As Dr. Bateman said “Codes matter” on how medical professionals view this illness in the field.

Third, having CFS listed under “chronic fatigue unspecified” erroneously indicates little is known about this disease. Having CFS coded the same as ME, as the rest of the world, indicates CFS is a neurological disease with muscular pain and inflammation in the brain or spinal cord. Studies show this is the case with CFS cohorts. Also, research now recognizes the CFS of the US is ME in other countries as many studies refer to the disease using both terms. We must end the multiple names, based on national preference, and multiple criteria that impede research progress. By accurately showing what has been labeled as CFS in the US is actually the ME of Europe and recognizing that ME research applies to those with CFS diagnosis and CFS research applies to those with ME diagnosis will advance scientific and clinical understanding of the disease. And we must distinguish and eliminate from our cohorts those who have “chronic fatigue unspecified.” Restoring CFS to 93.3 will act as a building block to a consensus definition for both researchers and clinicians. Let’s get this disease less complicated and make progress toward it having one name and one definition. Coalition Option 1 does that. NCHS Option 2 does not.

Forth, the premise the NCHS gave for separating CFS from ME and PVFS is that CFS does not have a viral trigger. As you all know, and research has shown, this is incorrect. CFS often, in fact in majority of the cases, has a viral trigger. Even the CDC acknowledges that. NCHS’s need to preserve data can not come at the expense of patient healthcare.

Fourth, to all those, including myself, who do not like the definitions for CFS and do not like the term, note that as long as it has its own diagnostic subcode, it will continue to exist as a separate illness from ME making the end game of eliminating the term CFS much more difficult.

Fifth, the Coalition is very concerned and strongly discourages NCHS Option 2 because it makes ME and PVFS have a new of “other chronic fatigue syndromes.” I don’t even have to explain why this is a huge problem.

Sixth, the Coalition’s Option 1 is in line with the National Institutes of Health that now refers to the disease as ME/CFS. It is in line with the very popular Canadian Consensus Criteria, which has stricter criteria for the one disease that it labels as “ME/CFS.” It is also in line with the new International Consensus Criteria that says in the first sentence: “Myalgic encephalomyelitis, also referred to in the literature as chronic fatigue syndrome, is a complex disease involving profound dysregulation of the central nervous system …” Notice, one disease, two terms, is dysregulation of the center nervous system.

A rose by any other name smells just as sweet. And ME, by any other name, is still a Central Nervous System disease that often has viral triggers and is disabling.

Lastly, I ask that medical professionals and the ME/CFS community take advantage of public comment period through November 18, and let NCHS know that Option 2 and data gathering cannot take precedence over what is the best interest of ME/CFS patients in the field and working to eliminate the term CFS.

I would like to thank the committee for the opportunity to speak and RMCFA and the Coalition 4 ME/CFS look forward to working with the CFSAC on future initiatives.


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