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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.
We believe that the higher prevalence of ME/CFS in women is a contributing factor resulting in the stigmatization experienced by patients and the failure of research investment commensurate with the burden of the disease by federal agencies. As you are aware, there is a long, documented history of gender bias in medical research and ME/CFS is one of many diseases negatively affected by this trend. Terms like "mass hysteria," "conversion disorder," and "Raggedy Ann syndrome" belittled patients and clearly undermined the seriousness of this terrible disease, where women are the vast majority of those who suffer.
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.
"This connection began last year with Bobbi Ausubel speaking with Carol about building ME/CFS as an issue within the women’s activist community. As you know, Carol has a long history of fighting for the rights of women and girls and was previously treasurer for the Los Angeles Chapter of N.O.W.
With Carol’s guidance, Bobbi and I began working on an informal “Women, Health Care, and ME/CFS” paper back in December. This paper included many of the historical issues of sex discrimination in the medical and research field, collecting together much of the previous work regarding other diseases that have been negatively impacted as a result of being a stigmatized disease, and linking that history to ME/CFS. One of the anticipated uses of this paper was to lobby for ME/CFS to be added as a key issue for the Women’s Caucus in Congress.
In January, Bobbi traveled to DC and met with the N.O.W. leadership, one of whom had a personal connection to ME/CFS. Bobbi also met with the Society for Women’s Health Research (SWHR), Congressman De Saulnier’s office and Dr. Walter Koroshetz. A few conference calls later, N.O.W agreed to collaborate with our small team to lead on a series of actions, including the letter to congressional leadership.
Originally, the letter was scheduled to compliment and support the activities of ME/CFS Advocacy Week in May and was scheduled to be sent on May 12th. As such, I wrote the original letter with an eye towards interweaving the messages from SMCI’s efforts, N.O.W.’s policy positions, and the original collaborative paper. N.O.W.’s team, Bobbi, Rivka (her daughter) and I worked together to edit and fine-tune the messaging. Unfortunately, after the letter was completed, several unforeseen circumstances conspired to interrupt its final approval for sending. As a team, we looked for another opportunity for the letter to make a strong impact – and the convergence of the recent funding bill from the House and Severe ME day was perfect timing.
I updated the letter to reflect the new political climate and current political asks. In addition, SMCI just recently completed our internal prioritization for next year’s advocacy work. The stars aligned to incorporate all of these elements into a single vehicle. The letter will be a powerful tool to help us move into the main stream political conversation, in addition to opening many new doors for collaboration and actions with new partners. Our work with N.O.W. is far from over and I hope to be sharing many more actions with you in the future."
National Organization for Women August 8, 2017
The Honorable Paul D. Ryan, Speaker of the House, United States House of Representatives, Washington, DC 20515
The Honorable Nancy Pelosi, Minority Leader, United States House of Representatives, Washington, DC 20515
The Honorable Rodney Frelinghuysen, Chair, Appropriations Committee, United States House of Representatives, Washington, DC 20515
The Honorable Nita Lowey, Ranking Member, Appropriations Committee, United States House of Representatives, Washington, DC 20515
The Honorable Tom Cole, Chair, Subcommittee on Labor-HHS-Education Appropriations Committee, United States House of Representatives, Washington, DC 20515
The Honorable Rosa DeLauro, Ranking Member, Subcommittee on Labor-HHSEducation Appropriations Committee, United States House of Representatives, Washington, DC 20515
Dear Speaker Ryan, Minority Leader Pelosi, Chairmen Cole and Frelinghysen and Ranking Members DeLauro and Lowey:
I write you today on Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis to urgently express the National Organization for Women's support for the restoration of funding and continued investment in research and related programming for Myalgic Encephalomyelitis (ME), historically known as Chronic Fatigue Syndrome (CFS). Currently, the House Subcommittee on Labor-HHS-Education has zeroed out the only line item for ME/CFS research in the Fiscal Year 2018 budget, H.R. 3358.
This cut in ME/CFS research and investment is especially disheartening considering last week’s breakthrough study from Dr. Jose Montoya of Stanford University which could pave the way for a definitive blood test for ME/CFS. Now is not the time to cut ME/CFS research programs.
The National Organization for Women (NOW) is the largest organization of feminist grassroots activists in the United States. NOW has hundreds of chapters and hundreds of thousands of members and supporters in all 50 states and the District of Columbia.
Based on information from ME/CFS patients and their supporters who are NOW members, our organization asks you to restore, strengthen, and accelerate federal efforts in ME/CFS biomedical research and clinical education now. Since the disease was first investigated by the CDC in the 1980s, federal agencies have failed to adequately conduct basic research or invest in the field to enable the necessary scientific understanding or clinical trials of ME/CFS. Furthermore, the extended lapse in the ME/CFS research landscape has allowed the disease to be stigmatized and misrepresented as psychological for many years.
This lack of concern, lack of urgency, and improper allocation of resources has historically occurred in relation to diseases that primarily affect women, and it must end. We need to make up for lost time and take the appropriate strides to address the heavy burden of this horrible disease.
This incredibly debilitating disease destroys the quality of life and livelihood of up to an estimated 2.5 million people in the United States; more than HIV/AIDS and MS combined. ME/CFS costs the U.S. economy between $17 to $24 billion annually. However, as the Institute of Medicine (now the National Academy of Medicine, 1100 H Street, NW, Suite 300 Washington, DC 20005 (202) 628-8669 website: www.now.org email: firstname.lastname@example.org Academies) notes, there has been “remarkably little research funding” to date to discover its cause or possible treatments. If we were able to find a cure or effective treatment for ME/CFS, it would save the U.S. billions of dollars annually.
We are asking for:
1) The restoration of funding for the Chronic Fatigue Syndrome line item in the CDC’s Center for Emerging and Zoonotic Infectious Diseases, currently funding a CDC multi-site study, medical education initiatives, and investments in the field of ME/CFS biomedical research.
2) The inclusion of ME/CFS as an eligible program area for the Congressional Directed Medical Research Program’s Peer Reviewed Medical Research Program, and
3) Additional language in the FY 18 appropriations process providing guidance to the NIH to increase investment in ME/CFS biomedical research.
A recent study published in the Journal of Medicine and Therapeutics estimated the World Health Organization (WHO) disability adjusted life years (DALY) measurement for ME/CFS and determined that, in comparison to other illnesses, NIH research funding for ME/CFS should be $188 million per year, over 25 times higher than the $7 per patient per year that is currently being allocated by the NIH, who’s recent budget estimates anticipate a $2 million reduction in funding for ME/CFS in FY 18. This is a criminal underfunding of a disease affecting millions of your constituents and it must be rectified.
Additionally, ME/CFS is too prevalent (affecting up to 2.5 million Americans) to qualify for subsidies and government incentives offered to pharmaceutical companies for rare disease research. Yet it is not prevalent enough to represent a large enough market share for private sector investment. ME/CFS research is “lost in the middle” and relies almost entirely on public funding for research investment.
We believe that the higher prevalence of ME/CFS in women is a contributing factor resulting in the stigmatization experienced by patients and the failure of research investment commensurate with the burden of the disease by federal agencies. As you are aware, there is a long, documented history of gender bias in medical research, and ME/CFS is one of many diseases negatively affected by this trend. Terms like "mass hysteria," "conversion disorder," and "Raggedy Ann syndrome" belittled patients and clearly undermined the seriousness of this terrible disease, where women are the vast majority of those who suffer.
We urge Congress to seize this opportunity to quickly advance diagnosis, treatment, and a cure for ME/CFS, by restoring and expanding funding in research and education programs at a level commensurate with other similarly burdensome diseases unaffected by stigma or gender bias. Doing so will spur research at a time when many scientists believe that major discoveries are imminent, as well as bring new investigators into the field.
Congress must take urgent and immediate action to reverse the damage of the past and provide renewed hope for millions suffering today.
Thank you for your attention to this critical issue. We look forward to your response.
Toni Van Pelt
President National Organization for Women
About the Author:
Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising