• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

My me/cfs open session email to IOM


Senior Member
Los Angeles, USA
I sent this 1/21/2014 in time for them to give it to the panel before the meeting. Much of this is the same as the first draft I posted before. I'm glad I posted the first draft, though, because I was alerted to some problems with it.

I have little hope the whole panel will read it. Also, it was interesting to find out they have the technology to allow the organizations to present orally via the web interface, but for some odd reason they say this is not available to individuals.

I request that the panel read my comment below. I’ve tried to make is as short as I can while still covering all my points.

The Illness Criteria

I am concerned about the current IOM effort. You cannot take evidence from research that is based on mostly weak criteria and use it to create better criteria. In the absence of standardized biomarkers, the only way to improve criteria is by evaluating the evidence in the context of observations from experts. This is exactly the process that led to the Canadian Consensus Criteria (CCC). And the International Consensus Criteria (ICC) used the same process, although the ICC have not received the same level of vetting. These two sets of criteria were created by experts who spent many years poring over the research and observing it in the context of working with patients. Unfortunately, the IOM has chosen to avoid input from a broad range of experts, and instead, put most of the attention on a review of a subset of the research. This raises a very real concern that the IOM process cannot possibly reach the same level of accuracy as the CCC.

Also, it is important to keep in mind that the purpose of diagnostic criteria is to differentiate one patient group from other patient groups. It is supposed to be a practical tool that works. Unless your conclusions are field-tested on actual patients, and proven to adequately differentiate them from other types of patients, you have no evidence-based criteria. What you have is a hypothesis based on a review of a subset of the literature.

Please remember that the literature does not define an illness; the manifestations of that illness within the patient population do. And the evidence in literature does not always give a good picture of this. This is especially true with ME/CFS where more than one definition is used. That is why any conclusions must be tested by experts using actual patients. This is what the experts have been doing with the CCC for the past 10 years.

Some people say the CCC is too difficult for doctors to use. This is ridiculous. Doctors are college graduates with advanced degrees. If I can follow the CCC, certainly doctors can too. Also, using the CCC is easier than diagnosing lupus. Current medical practice is for ME/CFS to be diagnosed by rheumatologists, and they are the same people who diagnose lupus.

I hope you endorse the Canadian Consensus Criteria. But I realize you might create new criteria. If you do, I offer the following solution. As a panel you are in the position to make a recommendation in addition to whatever criteria you recommend. I confirmed this possibility with the IOM. So I respectfully request that you give the strongest possible recommendation that new criteria not be put into use unless they are field-tested alongside of the Canadian Consensus Criteria and shown to be superior for differentiating patients. And that the methods for testing and evaluation should come from a joint venture of recognized experts and the HHS.

There are many advantages to insisting on this kind of test. The CCC has been endorsed by most of the recognized North American experts. There are strong beliefs among many people that CCC has advantages over the IOM process. That is why it is so important to test both side-by-side. It will go a long way toward answering many lingering doubts. It will hopefully lead to the best possible criteria that are available with what we know today. And it might even lead to something based on the best of both.