The Facts about the HHS/IOM Contract and the Expert’s Letter

[Ember]

Addressing the Misconceptions

http://www.mecfsforums.com/index.php/topic,17972.0.html

Introduction

As most of you know, two very significant events for the ME community happened a few weeks ago, on the same day (September 23). One was a very positive, even historic, leap forward: 35 of the leading ME researchers and clinicians sent an open letter to HHS Secretry Sebelius informing her that they had reached consensus on the use of the CCC as the researcher and clinical case definition for ME/CFS, asking HHS to adopt the CCC as the sole case definition for ME/CFS in all its activities, and asking HHS to not pursue a contract with the IOM. This is the first time in the history of this disease that a group of ME/CFS experts of this size have come together to endorse a case definition.

With any other disease this would be the end of it. The experts have spoken, and their authority to define the disease they are expert in would not be questioned.

Unfortunately, we all know that ME/CFS is not like any other disease. Our disease is political. Historically, HHS has not only ignored the disease experts, but made every effort to resist and deny the science about the disease.

On the same day, September 23, a very negative event occurred: HHS announced that—despite strenuous opposition from the patient community—it had entered into a contract with the IOM to develop “clinical diagnostic criteria” (i.e., a clinical case definition) for ME/CFS.

Much has been written about these two events, some accurate and some not. This posting will attempt to clear up some of the misconceptions that have been put forward and clarify why it is critical that the ME community take the following steps:

1) Give its strongest support to the expert researcher/clinician letter

2) Demand that HHS adopt the CCC, as the experts have urged

3) Demand that HHS cease all efforts to undo the work of the experts by using non-experts to redefine the disease. Specifically, HHS needs to cancel the IOM contract (to develop a clinical case definition) and the NIH’s so-called “Evidence-Based Workshop” to develop a research case definition (emphasis added)....

ME Advocacy Action: Urgent

 

[Nielk]

There is something you can do if you don't like or feel comfortable with what is happening with the HHS/IOM contract. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.