National Alliance for ME(US): Support the Call for Change in CDC Leadership

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Jun 10, 2009.

  1. QuayMan

    QuayMan Member

    (From Co-Cure. Apologies if it has already been posted - I did have a quick look around and couldn't see it. It's now not the first item - look at June 1)

    We now have easily printable letters, addresses and email addresses
    available on this page of the website:

    Lois Ventura
    National Alliance for Myalgic Encephalomyelitis
  2. simpsons

    simpsons Member

    kamina with so many letters getting sent they may not have time to repy to all but the message will get through loud and clear

  3. skeptik2

    skeptik2 Member

    Excellent site, so informative!

    Thank you for letting us know about this site.

    I despair; in my city there is not one doctor that I know of that would bother checking us out with all these tests to rule IN M.E. My own dr. sure wouldn't, but it's a military hospital and they won't acknowledge M.E. at all.

    ....and of course CFS is AIYH.

    This is an alliance to be part of though; Dr. Nancy Klimas worked at the CDC and she knows their dirty laundry, no doubt.

  4. simpsons

    simpsons Member

    thank you for posting this its important
  5. skeptik2

    skeptik2 Member

    long ago.

    Today I asked the law firm mentioned in simpson's post, and the Center for Constitutional Rights, to read Hillary's site and let me know if they would begin a class action lawsuit on behalf of my 21 y.o. grdau, whom I will not allow to go 20 years, like me, being told she has had a 'psychosocial' illness since she was 11 years old. She has had no care whatsoever for it. She finally falls asleep at 5 am and can't to be aroused to eat at 5 p.m. Took here to a dr. (she recently came to live with me so I could take care of her) last week; his 'treatment': you look like a perfectly healthy young woman to me, I think you need a psychiatrist. (We had taken the symptoms she had and the warning from a previous dr. that she'd have to watch for cancer all her life ('chronic EBV'), and that was his treatment!)

    Pray for us all...that theuniverse will know we need it's blessing and action now.


  6. jasminetee

    jasminetee Member

    I had to take the "." out between "Kathleen" and "Selbius" to get the email to send. Thanks for posting about this.

    Skeptik, prayers for your granddaughter. That is so tragic. She's so young.

  7. skeptik2

    skeptik2 Member

    prayers for us all...especially the generations to come. This is an epidemic and the CDC is criminally (IMHO) liable to us all for covering it up and changing the criteria for diagnosis for M.E. into a 'psycosocial"' entity called CFS. They had no right to violate our constitutional right to research, testing, studies, correct diagnoses and treatment, and I want to take them to task for it.

    you all keep bombarding Sec. Sebelius, especially; but forget the CDC. They are never going to change, and have no business getting one more dime of our taxpayer dollars for this type of psycosocial illness. They say on their website there is no biological basis for 'cfs'...of course their isn't, cuz it's NOT cfs, it's M.E., which they banished from the medical jargon years ago!

    Criminal, unconstitutional behavior, this, and I want to stop it NOW, not thru organizations for patients, but thru US.


  8. skeptik2

    skeptik2 Member

    BUMP plz

  9. karynwolfe

    karynwolfe New Member


    I'm REALLY confused. I don't understand why the first half of the page (the link) is all about how the CDC acknowledges the difference between CFS and ME, which is what we want...

    but then at the bottom, the letter to send to them starts calling it CFS/ME like they're the same thing... Isn't that the -opposite- of what we want? Again, I'm really confused... What???