IMEA to meet with CDC

Discussion in 'Fibromyalgia Main Forum' started by Wildaisy, Mar 21, 2011.

  1. Wildaisy

    Wildaisy New Member

    International ME Association Administrators are in the process of scheduling a meeting with Elizabeth Unger at the CDC. We are waiting for a date confirmation. At this time we are asking for patient input regarding any questions you would like to see answered during the meeting. Please contact us via e-mail at with your questions. This meeting could take place sometime in May. The meetings with Elizabeth Unger are being scheduled for "individual" advocacy organizations. They are "not" being scheduled as groups of agencies at one meeting and as one voice. This is to assure that all organizations and patients voices are heard.

    Here is a list of suggested questions that we have come up with:

    Why are the virology section and CFS section not working together when CFS looks like it is caused and perpetuated by an infective agent?

    Does the CDC believe that it is right to reclassify CFS in ICD-10CM? And if no, what are they doing to actively stop the reclassification?

    Why are the study of viruses (virology) not part of the 5 year plan?

    Why are there no long tem studies of ME patients to see what the secondary risks are and life expectancy.

    Why are there no family studies to determine risk to immediate family and ME patients children for developing ME and other disorders?

    How will the CDC identify patients. Will the CDC use the CCC definition and would they use WPI biobank or Dr. Cheney patient samples, if not why? Patients do not want the CAA biobank samples used in studies.

    How and when will any misinformation on their website regarding this illness be corrected?

    Where does the CDC recommend for newly diagnosed patients to go for information regarding ME other than the CDC website? Are men and parents of ill children currently referred to the Office of Research on Women's Health. Will the CDC help get ME/CFS removed and reassigned to the NIAID?

  2. gapsych

    gapsych New Member

    This is exciting. My only recommendation is that a rewording of your questions to the CDC. Perhaps making a statement like our organization is concerned about ???. This is what we would like to see happen. Can you give us some feedback on this.

    This is basically asking the same questions, just different wording.

    The last thing you want to do is put the CDC in a defensive position, as your message, an important one, btw, might not be heard.

    What's wrong with the CAA biobank? Are they contaminated? Now I'm worried.

    Good luck and let us know the date.

    Take care.

    [This Message was Edited on 03/24/2011]