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CRITICAL ACTION ALERT! Doctors Need to Know Campaign!!!

Discussion in 'Action Alerts and Advocacy' started by muffin, Mar 1, 2011.

  1. muffin

    muffin Senior Member

    Get the News to Doctors
    Posted by Tina Marie Miller Tidmore

    So far, 243 people have viewed the instructions for "Doctors Need to Know". It's March 1, launch date. So, we invite you to see the public announcement of this action: http://mcwpa.org/2011/03/doctors-need-to-know/

    Also, here are the suggestions and instructions: http://forum.mcwpa.org/viewtopic.php?...

    Please share this with your friends, on your facebook page, help us spread the word. Science has now given us an opportunity to free us from shackles of physician ignorance.

    Additionally, we have added products to our Zazzle store: http://mcwpa.org/about-us/fundraising/ Spread the word. Every invitation counts!



    Doctors Need to Know
    Posted by tina on March 1st, 2011 at 6:32 am From www.MCWPA.org

    Starting March 1, ME/CFS patients are educating physicians around the world of retrovirus discoveries (XMRV) as well as other biological abnormalities found with this disease. With medical schools and government agencies not fulfilling this role, like so many other matters, patients are doing it themselves.

    The campaign will last until March 15. Each patient is sending five letters and scientific documents to five physicians in their local area.

    These include:
    - National Institutes of Health announcement of their retrovirus findings.
    - Press release announcing unique proteins are found in spinal fluid of ME/CFS patients.
    - National Cancer Institute announcement of the original study, with Whittemore Peterson - Institute and Cleveland Clinic, that showed high level of retrovirus in ME/CFS patients.
    - List of top ten biological discoveries in ME/CFS patients, according to Dr. Anthony Komaroff, a professor at Harvard Medical School.

    The campaign was organized by PANDORA and CFS Solutions of West Michigan. In January 2011, MCWPA did a patient survey and participating in this project was in the top three choices. Patients were given suggestions and instructions in the Patient Discussion board.

    I (Muffin) Threw this one in from the above link.
    Public release date: 23-Feb-2011
    Contact: Jen Laloup
    Public Library of Science
    Spinal fluid proteins distinguish lyme disease from chronic
    fatigue syndrome
    This is the study that showed the ME/CFS sick had 738 proteins in our spinal fluid that were unique to us. If THAT isn't a huge enough number to get everyone's attention, well, they are plain stupid.
    I would make sure to use this PPress Release and the link to the study. http://www.eurekalert.org/pub_releases/2011-02/plos-sfp021811.php
  2. muffin

    muffin Senior Member

    Please do work on this Action - If WE do NOT educate our doctors, who will?

    I have yet to meet one doctor, aside from my internist, who has much more than a clue - really they know nothing - about ME/CFS, how to diagnose (My dogs could diagnose it), treat, and stay on top of the research that is flooding out the doors. I think there is something like 5,000 or so (give or take) studies on all aspects of ME/CFS and the Retrovirus family and yet these doctors STILL do not know about us?!? Noooo!

    My husband has to go to a shrink to get his sleep meds since we still can not find a doctor willing to diagnose and treat him. My internist has been treating me for 17 years but looked at my husband, this perfect "Poster Child" for ME/CFS and stated that my husband was "burned out" - this from a man who had seen thousands of sick MEN and women and yet HE refused to make the diganosis of ME/CFS on my husband. Go figure that one out. And so here we continue to sit, with me having to fly from one state to another state to get basic meds for ME/CFS - not special stuff - just the Klonopin, Gabatril, Ultracet. That's it. And my husband having to go to a shrink that fights him and ME to get him the most basic of medications. I friggin SHRINK! Not a real doctor who knows what ME/CFS is and how to treat properly - but a shrink!

    The internist where we live now won't even write me those prescriptions and told me I had to keep going back to my internist - which means I have to fly up there or have him mail me new prescriptions because I simply can't get on that plane (no energy and yes, it does cost money to fly). Never mind the shrink as he hates me especially since I keep trying to play doctor and tell him about ME/CFS and the Retrovirus and HOW to really treat my husband. But he is a shrink - not an internist or a infectious diseases guy - a shrink...

    So, please do what Tina has provided we ALL do. WE must educate our doctors. Pick any doctor in your area - or out of your area. Pick your own doctors. Pick other doctors not your own. But please DO provide the basic SOLID, "no kidding this is real" information to the doctors so we can get the diagnosis and medications and treatment we need.

    What's going to happen when they have a very solid case for the use of the HIV Anti-Viral medications and there is NOT a single doctor out there willing to prescribe those meds for you? What THEN do you do? Meds that work to help get you a better quality of life and not just fix the symptoms (that's great too), but really kill off the Retrovirus that many of us probably DO HAVE in our systems? WHO will give us those meds? Who will know enough or be strong enough to treat us? Those doctors aren't there now, so what's going to change when the news is out that those Anti-Virals WILL KILL OFF the Retrovirus and give us back our lives????

    Write those letters!!! If you feel "odd" about sending your own doctor the info, then leave out your name. But you did educate that doctor and THAT is what counts.
  3. markmc20001

    markmc20001 Guest

    Hi Muffin,

    Where can we find those "five documents" we are supposed to send out?


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