PANDORA Org Urges HHS to
 Respond to Patients and Experts

We have been very disappointed in the lack of response from Sec. Kathleeen Sebelius to the following:

• Patient emails asking for cancelation of the Institute of Medicine (IoM) contract to create an ME/CFS definition consensus
• The letter from many experts asking the contract to be canceled
• The Chronic Fatigue Syndrome Committee (CFSAC) recommendations, request from patients and many experts that the Dept. of HHS endorse the 2003 CCC

Sec. Sebelius is very busy with the problems of the Affordable Care Act website. So, we contacted Dr. Wanda Jones, who is third in line under Sebelius and the former designated federal officer for the CFSAC. We told her that there needs to be proactive communication from the Dept. of Health and Human Services (HHS) instead of surprise announcements. We told her the FDA is being more transparent and communicating more, and it is going well for patients and for the agency.

We asked her to inform the patients on answers to the following questions:
1. Can the IoM contract be stopped? If not, why not?
2. Can the Dept. of HHS endorse the 2003 CCC as patients, many ME/CFS experts and the CFSAC want? If not, why not?
3. Why did the Dept. of HHS not follow the CFSAC recommendation to host a workshop of ME/CFS experts and instead contracted for the IoM to do a study?
4. Considering that the Gulf War illness treatment study came back with requiring only two symptoms for diagnosis and that the NICE Guidelines are one of the things considered in the ME/CFS IoM study, what guarantee do the patients and ME/CFS experts have that something more broad, and therefore more harmful, than Fukuda won't be the result?
Dr. Jones told us she will work with the current CFSAC designated federal officer, Dr. Nancy Lee, and put out a statement soon addressing these issues.

For more background information on this issue, see our statement on IoM request for nominations and our position on ME/CFS definitions.

Lori Chapo-Kroger, RN

President and CEO, 231-360-6830

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