We have previously posted about Dr. Unger’s invitation to MEadvocacy requesting our participation in the Technical Development Workgroup (TDW) for the Center of Disease Control and Prevention (CDC), here. We explained why MEadvocacy decided to opt out of the CDC’s workgroup.
We subsequently got another email from Dr. Unger which we are posting below as well as MEadvocacy’s reply to Dr. Unger. The reason for posting this on a public blog is in the interest of transparency as well as further explanation of MEadvocacy’s stance.
Email from Dr. Unger to MEadvocacy: 1/25/2016
Please allow me to give you a little more explanation about our reply to your question. I was a member of the CFSAC working group that provided recommendations about the IOM report to the committee. The idea to develop a mechanism to gather thoughts from all stakeholders before preparing our web page arose directly as a result of this valuable experience. One of the many areas of debate was how to incorporate additional symptoms cited by CCC and ICC. The short response perhaps belies our sincere interest in assuring a process in which divergent points of view can be heard. It is clear that there is not consensus in the field, but it is important to move forward together, agreeing on what we can and figuring out how to work through areas of disagreement. CDC feels that the prestige of the IOM committee should be leveraged to disseminate important information about this illness to the medical community so that patients can get the care they need from understanding health care providers. We hope that you will reconsider your decision.
Email from MEadvocacy to Dr. Unger: 2/3/2016
Dear Dr. Beth Unger:
Thank you for your email asking MEadvocacy to reconsider its position.
As we have stated in our previous reply, MEadvocacy is committed to advocating for Myalgic Encephalomyelitis (ME), as defined by the CCC or ICC criteria. This criteria was recommended by CFSAC in 2012, by experts as well as by advocates and patients, thousands of whom have signed letters and petitions to the Secretary of HHS.
ME is a serious acquired neuro-immune disease. It is currently coded as a neurological disease by both the WHO and the US ICD-10-CM under code G93.3. ME's disease criteria are not adequately captured in the US governmental health agency-sponsored IOM report that cost taxpayers one million dollars. This money would have been better spent researching biological markers for the disease.
The IOM criteria are overly broad. A patient without any neurological or immune dysfunction can be diagnosed with the IOM criteria resulting in including patients who do not have the disease coded under G93.3.
We refuse to endorse diagnosing ME patients by using overly broad criteria and/or training providers on doing so. It is murky criteria like the IOM and Fukuda that have prevented progress. This has directly led to the misdiagnosis of many patients as well as the lack of biomarkers and no FDA-approved treatments. There have been too many early deaths of ME patients as well as those suffering from extremely poor quality of life for decades.
Promoting the IOM criteria is bound to skew the clinical picture physicians see of the patient population. Lumping different groups of patients into a ‘one criteria wastebin’ has the potential of treatments being prescribed which work for one group but may be harmful for others within the same criteria.
Therefore, we must decline taking part in the CDC workgroup with a predetermined outcome that is driven by, as you described it: “CDC[’s] feel[ing]s that the prestige of the IOM committee should be leveraged to disseminate important information about this illness to the medical community.”
To this day, our specific question has not been answered as to whether the workshop would allow for the inclusion of symptomatology laid out in the CCC and ICC. Your above email again fails to do so and we cannot help but feel that this is an answer in and of itself. It simply makes no sense for MEadvocacy to be involved in a process that disseminates information to the medical community about a disease that, based on abundant past experience with other definitions, is likely to be harmful to ME patients.
Advisory Group Member