Following is the comment written and presented by Charlotte von Salis, J.D., at the Institute of Medicine meeting on January 27, 2014.
You’ve heard a lot today. You’ve heard from three government health agencies, you’ve heard from IOM-selected stakeholders, you’ve heard that there is a huge groundswell against this study, and you’ve heard why that is so.
What can you do? You can assess this situation as scientists and physicians. Dr. Nancy Lee is on record stating that Secretary Sebelius told her a case definition is a clinical decision that has to come from the clinical community, not the Federal government. Yet you have just heard from three representatives of the Federal government. And you have been told to coordinate and work with this study’s sponsor, the NIH, through its Pathways to Prevention program. This is in direct violation of IOM’s study process and presents a blatant conflict of interest.
How is this an independent and objective process? How is this about science and medicine? If you think your task order isn’t politically motivated, consider that the CDC has been well-aware of the scientifically sound and expert-driven Canadian Consensus Criteria for over a decade — yet refuses to take down its own diagnostic and treatment guidelines, the harmful and misleading CFS Toolkit.
Your task, to develop clinical diagnostic criteria for ME and CFS, has already been accomplished. Two primers, specifically aimed at clinicians unfamiliar with the diseases, are already available. Both are based on criteria developed by disease experts and published in peer-reviewed medical journals. Both are available as easy -to-distribute pamphlets. I am referring to the Overview of the Canadian Consensus Criteria and the ME-ICC Primer for Medical Practitioners. The latter is an update of the former to reflect scientific developments through 2011.
That’s right. It’s based on science, not politics. And the combined knowledge of experts who collectively have diagnosed and/or treated more than 50,000 patients with M.E., have more than 500 years of clinical experience, have approximately 500 years of teaching experience, and have authored hundreds of peer-reviewed publications.
You cannot do better. Some of you are new to this disease. How would you feel if non-experts decided to diagnose heart failure? Or lymphoma? Or Lupus?
If you truly want to fulfill your task, all you need to do is read, share, and distribute these pamphlets. Both are available from the UK charity, Invest in M.E., and can be downloaded from a number of websites. Both can and should be distributed.
Each one of you is a unique position to do just that. Order these guidelines, print them out, or at least share the websites URLs with your networks. Use your positions to get these documents out to primary care physicians.
Tomorrow, tell the IOM to stop this needless study. Defer to the collective judgment of your eminently qualified colleagues and do your part to get the CCC officially adopted.
Resign from this panel. To do otherwise is to harm patient care and impede research.
Charlotte von Salis, J.D.