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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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

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.
https://www.healthrising.org/forums...organization-joins-the-fight-for-me-cfs.5525/
 
Messages
2,125
from may 2017
"
Issue Advisory: Research Needed for ME/CFS
By Kathryn Gimborys, NOW Public Policy Intern, with contributions from Rivka Solomon and Emily Taylor, of Solve ME/CFS Initiative, May 10, 2017
ISSUE ADVISORY: NOW Foundation Women’s Health: Research needed on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Neglected and Misdiagnosed Disease that Strikes Mostly Women"

http://now.org/update/issue-advisory-now-foundation-womens-health/
 

Emily Taylor

Senior Member
Messages
149
Location
Los Angeles, CA
from may 2017
"
Issue Advisory: Research Needed for ME/CFS
By Kathryn Gimborys, NOW Public Policy Intern, with contributions from Rivka Solomon and Emily Taylor, of Solve ME/CFS Initiative, May 10, 2017
ISSUE ADVISORY: NOW Foundation Women’s Health: Research needed on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Neglected and Misdiagnosed Disease that Strikes Mostly Women"

http://now.org/update/issue-advisory-now-foundation-womens-health/

Hi Everyone -

Please hold off (for now) on sharing the Issue Advisory. N.O.W. would like to make some changes to this document before it is cleared for wide distribution. I will be sure to share it when it has the green-light for promotion.

Many thanks,

~Emily
 

RivkaRivka

Senior Member
Messages
368
Hi all, this National Organization for Women "Issue Advisory" has been updated and had the necessary corrections made to it. We can now publicize it, if we wish. Here is it:

http://now.org/update/issue-advisory-now-foundation-womens-health/

ISSUE ADVISORY: NOW Foundation Women’s Health: Research needed on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Neglected and Misdiagnosed Disease that Strikes Mostly Women

May 12, 2017

Rivka’s Mysterious Illness – When NOW member Rivka Solomon was 21 years old, she contracted mononucleosis. However, instead of recovering normally, she remained sick and incapacitated for a year. She was forced to withdraw from her social activities, she was unable to leave her home, and she was unable to exert any physical and intellectual energy without experiencing subsequent extreme exhaustion and physical pain.

However, all her medical tests came back negative, and no doctor could find a cause, let alone a cure, for the condition that had devastated Rivka’s life. After a few years of spontaneous remission, her symptoms returned and she was once again forced to put her life on hold. As Rivka herself puts it “my body just collapsed.” ...

(The article goes on from there!)
 

Anne

Senior Member
Messages
295
Hi Everyone -

Please hold off (for now) on sharing the Issue Advisory. N.O.W. would like to make some changes to this document before it is cleared for wide distribution. I will be sure to share it when it has the green-light for promotion.

Many thanks,

~Emily

@Emily Taylor

It would be most helpful to be able to show the NOW letter to Congress from August to women's organizations in other countries.

Is it OK to share the August letter now? Do you have a link where it's available?