The Time is N.O.W. - National Women's Advocacy Organization Joins the Fight for ME/CFS

Discussion in 'Advocacy, Contests and Events' started by Cort, Aug 13, 2017.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    This one action demonstrates why it's so important to have a full-time professional advocate for chronic fatigue syndrome (ME/CFS). The National Organization for Women (N.O.W.) is not a small organization; it has 550 chapters in all 50 states. It's a natural ally for a disease that's a) dominated by women (b) can't get any respect and (c) is chronically underfunded, yet until N.O.W. it's never taken up the fight for women with ME/CFS. (My guess is that it's never been asked...)

    That's a little shocking. There's no mystery about the discrimination going on at the federal level. The NIH is willfully ignoring diseases that are common, predominantly effect women, cause high amounts of pain, fatigue and disability, but rarely kill. There's ME/CFS ($11 million/year) which whacks people harder than just about any other disease, FM ($9 million/year) which affects ten times more people (and gets less money), and then there's migraine ($14 million/year)...the third most common disease worldwide - which gets pennies per patient per year.

    These are the last great group of underserved women's diseases, and they deserve the National Organization for Women (N.O.W.'s) help. Women have the right for their health needs to be taken seriously both at the doctor's office and at the research level as well.

    Now N.O.W. - the most powerful grassroots women's advocacy group in the U.S. - is finally stepping up to the plate for ME/CFS. Thanks to the work of Bobbi Ausubel and Emily Taylor of The Solve ME/CFS Initiative (SMCI), N.O.W. has produced a powerful letter urging Congress to add back in CDC funding (it's been zeroed out again), to increase research funding to appropriate levels and to make ME/CFS eligible for additional Congressional funding.

    The letter notes that the neglect of women by medical funders is not new at all.

    I was struck again and again during my days listening to the Open Medicine Foundation's Working Group and their Symposium by the need for one thing - more money. We have excellent researchers; we have people who know how to tackle big problems - what we are lacking now is money. Not a little money - not a couple of million dollars more a year, but big money - $20/$40/$50 million or more a year.

    In order to get that, we're going to need enroll others in the fight. Doing so whereever she can is clearly a top priority of Emily Taylor of The Solve ME/CFS Initiative. I don't know why it took so long for N.O.W. to join the fight for ME/CFS, but I'm sure glad that they're with us now.

    Getting N.O.W. Involved: How It Happened

    I always wonder how these things came about and asked Emily. As is often the case, the effort turned on just a few people. First came the President of the SMCI, Carol Head, with her long history of advocacy in women's issues. She had the vision to hire a full-time advocate for ME/CFS and approved Emily's participation in it. Then came Bobbi Ausubel working on her own, and, of course, Emily Taylor of the SMCI.

    Who else was involved? Everyone who's supported the SMCI. This is your money at work.

    From Emily:

    Last edited by a moderator: Aug 13, 2017
  2. Cindy Downey

    Cindy Downey New Member

    Hi Cort,

    Thank you for posting the story about this exciting accomplishment.

    N.O.W. coming on board is important news. Thank you very much, Emily, Carol, Bobbi, et al. !!!

    It is interesting that this organization, and others similar did not become involved much earlier. This illustrates just how hidden ME is. Let's hope more similar groups, including women's studies departments in colleges and universities follow suit; study this issue, write about it, raise awareness etc.

    Solve ME/CFS Initiative, might your research about women's health and medical/research bias be made available to others to reference?

    Thanks very much again to everyone for this important accomplishment.
    starsister and waiting like this.
  3. ixchelkali

    ixchelkali New Member

    waiting likes this.
  4. Jane T

    Jane T New Member

    Yay! Thank you Bobbi, Carol, Emily, and others!! I know Bobbi has had an idea regarding N.O.W. and worked locally to try to get some momentum going starting in her area chapter. She's a go-getter and I admire her tenacity for Rivka and all of us. Thank you Rivka for working on getting N.O.W. involved also. It often feels like us sick people are the main advocates and it feels unfair and lonely to figuratively and literally be out battling for yourself when you're sick. You (I) don't want to complain to people about how sick you might be when you don't see them, but when we're well enough to be social, people don't necessarily see the depth of suffering we experience otherwise, to know how much we need help and a voice. We need more champions for this cause!
    waiting and UK Margaret like this.
  5. Well, all fine and good, I suppose. But I for one am sick that the largest provider of abortion in this country is affiliated with a disease I've had for almost 40 years. No thank you for any "help" they may give us. I doubt their concern goes any deeper for us then just words. Their main focus is killing the unborn . This isn't political, this is aligning ourselves with an organization that isn't concerned with women's health at all. Just the huge profits that are made from killing. My heart is pounding right now. I want nothing to do with N.O.W!!
    Go ahead and cheer. Not all of us with CFS are nothing but sickened about this. I'll have CFS for the rest of my life rather than feel that anything has. Been gained be an alliance with this group.
  6. Forebearance

    Forebearance Well-Known Member

    Thank you so much Rivka, Bobbi, Carol and Emily!
    waiting likes this.
  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    It is funny isn't it. I'll bet nobody brought it to their attention in the right way.
  8. Thanks Cort, Emily, Rivka, Bobbi and Carol. I sent this posting along with a note to a couple of Canadian Women's Organizations. Will see where it goes.
    waiting likes this.
  9. HardBoiledBlonde

    HardBoiledBlonde New Member

    Get off this forum then, Jeanie! Go away. Bye bye! Do. It. NOW.
    We don't want you here anymore.
    Don't agree with abortion, then choose to not have one. It is, and will forever remain, a woman's constitutional right to choose!

    I, along with the overwhelming majority, am thankful for NOW's help. The medical and other science fields have discounted women for far too long. NOW is a perfect fit. I was a NOW member for years. I need to look into becoming a member again.

    Thank you NOW!
  10. starsister

    starsister New Member

    Jeanie, I'm confused by your post. NOW doesn't provide abortions. Do you just mean the group has taken a Pro Choice stand politically? Did I miss a reference to a medical provider such as Planned Parenthood elsewhere. I was a pregnancy counselor for years at Planned Parenthood and heard first hand the tragic stories of women and girls pregnant from rape and incest, an ill and uneducated single mother of 9, surviving on Medicaid, and told by her (non PP dr) that she would likely die if she tried to carry one more pregnancy. I heard the love for her children she had, and the fear of the future for them if she died with no one else to care for them. She was the only parent they had ever known. In all my years doing counseling, as well as running a support group for women who had had abortions, so they could have support to grieve, I never met a woman who took the life inside them lightly. Your anger and bitterness towards others will only contribute to your health problems.