CFIDS needs us-donate tissue from upcoming surgeries

Discussion in 'Fibromyalgia Main Forum' started by ulala, Jun 5, 2006.

  1. ulala

    ulala New Member

    Has anyone donated tissue from their surgery for research?

    Please read 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 06/05/2006]
  2. Mikie

    Mikie Moderator

    Let's keep it bumped. I'll print it out just in case.

    Love, Mikie
  3. victoria

    victoria New Member

    so, bumping this up!

  4. maps

    maps New Member

    I have printed it out and will give it to my CFS doctor next week.

    Wish I was having surgery, it would really feel great to think I was helping end this misery.

  5. carebelle

    carebelle New Member

    I am sooooooooooooo happy they are doing this .I have told my husband for several years now when I die I want my body left to science .

    Hoping that at least after I die they would be able to find out what was wrong with me.

    This gives me so much hope that they will find out sooner before we die. Maybe we will have a better life!

    I may be having surgery in a few months I have put it off but now this is reason to really do it.

    It also makes me feel like wow my contribution may help discover what is wrong with all of us.
  6. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    i'M pretty sure that this same CFIDS assocation is one that is supported by Prohealth proceeds. Please correct me if I'm wrong, but when you buy from the store, much of the money you spent on supps you need anyway, goes to ME research to various orgs, mostly American, but some even Canadian

    I just wish they'd stock more of the supps I need to buy elsewhere, esp. my glandulars.

    [This Message was Edited on 06/06/2006]
  7. findmind

    findmind New Member

    So good to see this here! I'm a supporter of NCF and think they are doing a lot to end our suffering.

    So, BUMP

  8. Mikie

    Mikie Moderator

  9. ulala

    ulala New Member

    bump. Please keep bumping this so people are reminded if they have surgery they can help themselves and all of us who are suffering.

  10. findmind

    findmind New Member

    BUMP, please...

    So important for all to see