Monday, January 20, 2014

We Have Been Kept Silent for Too Long

On January 27, the IOM will hold its only public meeting regarding its contract to develop diagnostic criteria for ME/CFS. The contract has been hotly contested by ME/CFS advocates, and by physicians and researchers who are experts in the illness. The position taken by 50 of the top experts in the field is that non-experts should not have a say in determining the definition of an illness they know little about. They also point out that a clinical definition has already been developed - the Canadian Consensus Criteria.

More than 100 advocates have supported the experts' position. They have also drawn attention to the fact that the previous IOM case definition for Gulf War Illness was a disaster. (The IOM's definition for "chronic multisymptom illness" is currently being challenged by veterans.) In its report on treatments for "CMI," the IOM stated in the Review of Treatments for Comorbid and Related Conditions that "Two specific therapies are recommended for people who have CFS: CBT and Graded Exercise Therapy (GET)." (You can read the report HERE.)

The ramifications of replacing the current CDC case definition with one that is even worse - along with accompanying recommendations for treatments that are either harmful or useless -  make the IOM contract one of the most important challenges the ME/CFS community has ever faced.

Do you have something to say?

Seven people have been invited to make short 10-minute presentations at the meeting (see the list HERE). Fifteen more will have a chance to make 3-minute comments. That's a total of 105 minutes. 

Do you think that an hour and 45 minutes is long enough to convey the concerns of more than 17 million ME/CFS patients to the IOM?

I certainly don't. 

Fortunately, there is a mechanism for making your concerns known to the IOM committee. You can submit written comments via email - and I strongly encourage you to do so.

Send an email to

Please focus your comments on the following question: 

“What is the most important aspect or information that this committee should consider throughout the course of the study?

Written comments received by January 22, 2014 will be distributed to the committee before the meeting on January 27. After January 27, written comments should be sent to the project email address: 

Don't miss this opportunity to speak your mind. We have been kept silent for too long.

Note: You can preregister for the webcast HERE.


  1. Thank you for this reminder, Erica.

    Everyone please email today, the last day. All you have to do is make the one crucial point:
    Adopt the CCC because the vast majority of our experts (along with 197 patient advocates and professionals and 3,700+ patients and allies) have demanded it!

    You can copy this word for word or right it in your own words. The important thing is to write in.

    1. Dear Sirs,

      Given the existence of a perfectly useable definition which has been widely endorsed by 50 experts in the field (the Canadian Consensus Definition), the IOM contract to redefine the disease Myalgic Encephalomyelitis (ME/cfs), is an unnecessary waste of time and money.

      Statements already made by the IOM regarding ME/cfs, in their recent report redefining Gulf War Illness (into the new but meaningless “Chronic Multi-symptom Illness”), suggest that the IOM will have considerable difficulty reconciling those statements with anything other than a bias towards bogus psychosomatic conclusions in their final report on ME/cfs. This would be entirely contrary to the overwhelming weight of evidence that ME/cfs is rooted in a complex disruption/ dysregulation of the immune system.

      The IOM contract award process was hidden from proper public scrutiny and suggestive of improper conduct on the part of public officials.

      Given that the IOM has previously expressed a bias towards psychosomatic explanations of this disease, there is considerable evidence to suggest that the IOM redefinition process will result in an outcome which is completely contrary to the interests of people suffering with M.E. and will not help to advance the research process more quickly or more effectively. In fact, I believe that their work it will create less clarity in the definition which will have the completely opposite effect to that which is needed.

      Please listen to the real experts in this illness. Redefinition is unnecessary. Please adopt the Canadian Consensus Criteria now.


      Yours faithfully,


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