Discussion in 'Fibromyalgia Main Forum' started by quanked, Apr 18, 2009.

  1. quanked

    quanked Member

    3gs posted this website it is the national cfs site. they provide info on how to donate tissue samples (for people diagnosed with cfids) for studies. check it out if interested. INFO BELOW...

    Donating Samples Taken During Surgery

    What The National CFIDS Foundation, Inc. (NCF) considers the most important
    research into CFIDS/ME (Chronic Fatigue Immune Dysfunction/Myalgic
    Encephalomyelitis) needs your help! Researchers hoping to identify what could be the cause of this disease will find their work made much easier with samples from patients who have been diagnosed with CFIDS/ME. If you have a medical procedure that is upcoming, please consider helping research progress with a donation of:

    1. A sample from a bone marrow biopsy
    2. A sample of spinal tap fluid
    3. Tissue samples affixed to a slide with paraffin

    However, under no circumstances does the NCF recommend that you have any
    procedure for this cause! We are asking for your help if a surgical procedure is already considered necessary by your own medical physician. If you have one that you know is upcoming, we have a release form that will protect your own rights as a patient for you to sign. We also have an addendum that will exclude the hospital and physician from any liability due to providing the samples and should be given to the hospital. During any surgical procedure, samples are routinely taken from the patient which does not harm them. These are very small and incur no additional surgery.

    Please ask us to provide you with these forms if you have surgery in your
    future in order to benefit the research we are currently funding. Once you have read and signed the release forms, the samples can be sent from the pathology laboratory directly to the National CFIDS Foundation. We will forward them directly to the researchers. Send samples to:

    National CFIDS Foundation, Inc.
    103 Aletha Road
    Needham, MA 02492-3931

    The pathology department at your hospital sends out samples for pathology
    reports so sending additional samples to us is easy for them to do. The patient does not handle these samples as the hospital/clinic pathology laboratory does and is responsible for sending these samples out. This donation of a sample from your surgical procedure may prove to be the most valuable gift anyone has the ability to give.

    Request the permission forms that protect you and your physician/hospital/clinic via e-mail at giving your name and regular (snail mail) address to have them mailed to you or write to us for the forms.

    For Our Better Health,

    Gail Kansky
    President, National CFIDS Foundation, Inc.
    103 Aletha Rd.
    Needham, MA 02492-3931
    [This Message was Edited on 04/18/2009]
  2. quanked

    quanked Member

  3. 3gs

    3gs New Member

  4. stschn

    stschn New Member