A Woman Who Dared—With ME

It was late afternoon, and I could barely get my body out of bed. In fact, I had been in bed most of the last few days—or was it weeks? Even with all that rest, my legs were still too weak to stand up.

It wasn’t that I lacked the desire to get up or that my limbs couldn’t function. I just didn’t have the cellular energy to power up my muscles. I couldn’t do anything except lie flat. Even that was exhausting.

This state of sheer debilitation was not new to me. And it hadn’t been going on for days or weeks. It had been a decade.

A still from the film Unrest about ME.

On this day, in the spring of 2003, I pushed past the utter exhaustion, even knowing that this exertion would cause my condition to worsen. I was determined. After all, I was being honored with a Women Who Dared award. It was being presented by the Jewish Women’s Archive and Hadassah Boston for my women’s empowerment work. Neither of the organizations honoring me, nor the 300 dinner guests at the award ceremony, knew I did most of that work from my bed.

Should I tell them? I wondered. I had written about my illness in my speech. But would I have the guts to reveal my personal struggle in such a public setting?

The only thing the attendees knew about me was what they could read in the event program: I was a Jewish woman dedicated to social change, in short, to tikkun olam (“repair of the world”). My activism focused on a book I’d written, celebrating the bold and courageous acts of women and girls. I then started a global open mic movement where women from all backgrounds gathered to share their own experiences, telling true tales of daring deeds, and celebrating the chutzpah they needed to fight back against abuse and sexual assault.

What the attendees didn’t know was this: I had ME (Myalgic Encephalomyelitis), a chronic neuro-immune disease that disables between 1 million to 2.5 million Americans and 17 to 20 million people worldwide. The disease is debilitating: it often leaves me too exhausted to do basic tasks, such as cook a meal. It leaves my brain so muddled, I sometimes pause mid-sentence to remember what I’m talking about. Due to my disability, other people lead my women’s empowerment events. I usually can’t even physically get to them.

ME is commonly known as Chronic Fatigue Syndrome, a belittling name that does not reflect the devastation of the disease. There is no cure, and no FDA-approved treatments for ME. Perhaps because 75 percent of ME patients are women, and doctors have historically minimized women’s pain and physical experiences, the disease receives little attention and barely any government research funding.

This lack of research, coupled with negative stereotypes of either the lazy or hysterical woman, has translated to dismissal, stigma, and lack of help and treatment for all people with ME — both men and women. For the past 30 years, the National Institutes of Health (NIH) has pushed ME into the shadows by giving it less than $6 million per year in research funding. In fact, a recent paper shows that ME is severely underfunded by as much as twenty-five-fold, based on its level of disease burden and prevalence compared to other diseases that NIH funds.

Recent hope that the NIH would treat ME with the full seriousness it deserves has fallen flat. Calculations show ME funding went from $6 million last year to $13 million this year––from a biseleh to a bisele (from very little to a little). Even $13 million per year is bupkis (nothing). By comparison, multiple sclerosis, a similar neuro-immune disease with half as many patients as ME, regularly gets almost $100 million per year.

The National Academy of Medicine stated in 2015 that ME is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients. They said ME patients are more disabled than other highly disabling diseases, including multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.

A striking 90% of people with ME are undiagnosed or misdiagnosed, likely because ME is not taught in medical schools. For decades the guidanceprovided to doctors, including, until only recently, from the CDC, misled doctors on the nature of the disease and stated that exercise would help. In fact, telling an ME patient to exercise is like telling a diabetic to eat sugar.

I made it to the Jewish Women’s Archive and Hadassah Boston event that night in 2003. My legs wobbled as I walked to the podium and my voice shook—not out of fear, but out of sheer exhaustion. That evening, I embraced the sentiment behind my women’s empowerment work; I stepped through my fear to tell the audience members about my disability. They responded with warmth and support.

Now, 15 years later, I don’t hesitate to share my story with the world. In fact, I now use all the skills I learned from my women’s work to assist ME advocacy groups.

As my latest tikkum olam effort, I am co-organizing, along with the Massachusetts CFIDS/ME & FM Association, a Boston area event on November 12. UNREST, a Sundance Film Festival and Boston Globe award-winning film by Jennifer Brea, is both a love story and a window into the hidden lives of people with ME. An impressive list of artistic, academic, disability and women’s groups are co-sponsoring our event—including the Massachusetts Department of Public Health.

No cure, no treatments, little research funding and doctors who dismiss patients or recommend treatments that can cause harm: it is understandable patients struggle to hold on to hope. But with this film, and the extensive media attention it is getting, the ME community is coming out of the shadows and into the light. As a Jewish woman who dares, I’m committed to doing my part to help.

This essay originally appeared on Jewish Women, Amplified—the blog of the Jewish Women’s Archive. Republished with author permission.

Rivka Solomon is a writer focusing on disability and women’s empowerment. She has organized demonstrations in front of the US Department of Health and Human Services, raised funds for ME research foundations, received the support of elected officials and secured State and City Proclamations for ME Awareness Day. You can find her on Twitter @RivkaTweetsPlease contact Rivka if you are interested in co-sponsoring the upcoming screening of Unrest.

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Comments

  1. Thank you, Ms., for knowing that it is important for people with ME to speak up and share their life experiences.

    I encourage everyone to join an ME advocacy group, such as MEAction.net, SolveCFS.org, MassCFIDS.org and AMMES.org. And I encourage everyone to help fund ME research via supporting OMF.ngo.

    I also hope readers of this article can share their own stories of living with ME. Our stories are important, and the world needs to know them.

  2. There are so many women who don’t know about this disease. There needs to be a national campaign educating people in the United States. Our government needs to stop allowing sexism to inform funding for women’s healthcare and research. Thank you Ms. magazine for publishing this important article.

  3. Excellent article.

  4. Art Mirin says:

    Very important article. The world needs to know about this devastating disease.

  5. bobbi ausubel says:

    Wonderful for this “Hidden Health Crisis” to be talked about, especially in a women’s magazine, since 70% of those with this illness are women. A great article. Lets have more about ME/CFS in the future.

  6. Marguerite Wilder says:

    This is a very important article. This illness is so underfunded. Doctors don’t know about this – so many medical practitioners view it as a “mental disease”. More women than men are diagnosed with this illness. People are going from highly productive citizens to a bed ridden existence. We need research funded. There is no approved drugs or medication for ME. People with ME are given “off the shelf medication. There are only 3 physicians in all of New York that treat this illness. Most states have NO physicians. Thank you for this article. Hopefully more people will become aware of ME and medicines will be found to fight this disease. But first there must be funded research. I wonder since it is considered a “woman’s disease i.e. hysteria” – Could this be the reason it is so underfunded?

  7. Rochelle C says:

    Thank you for sharing so eloquently with the world what the struggle is like, and how difficult it is to do regular things. Thank you, also, for pointing out how people w ME often become invisible and hidden away due the th condition even while seeming to be functioning well to the outside world. Thank you

  8. Andrea Balderstone says:

    An inspiring article. The more people talk about ME the better chance we have of getting more funding globally.

  9. Rivka, this no you for finding the strength to Al an out about this aful, life changing disease. There is way too little understanding, and what you haven’t mentioned is how the effort of pushing through to attend the award ceremony, and give your speech, probably had huge impact on your health.

    It is very impressive, how you are still managing to make such an impact in the world from your bed. But this is one of the most striking things about the condition – unlike with other illnesses, sufferers want to do and are only held back by the restrictions of this illness. We are not lazy, hysterical or depressed!!

  10. That should say, speak out about this awful…!

  11. Great article and so important. ME patients have been mistreated as lazy or hysterical for decades.

  12. Thanks, Rivka and Ms. This hits home for me. I’m largely housebound now, and the little tikkun olam I still manage is done in pajamas. For many years, I was able to continue my public service law practice and hide my increasingly disabling ME/CFS. But eventually it took me out.

  13. Thank you for publishing an article on this atrocious disease that has been grossly neglected and dismissed for far too long. May this be the beginning of a new era in Me/CFS research that leads to effective treatment and recognition. Please continue writing about this vital topic!

  14. Wow. Thanks to Ms magazine for publishing such a powerful essay by Rivka. The degree of neglect by the NIH of this disease and other related diseases that largely effect women is astonishing. ME/CFS, fibromyalgia, migraine, IBS and other “invisible”, pain and fatigue causing diseases that primarily effect millions of women across the U.S. are given almost no funding by the NIH.

    Millions of women are having to suffer needless pain, fatigue and aren’t given the help they need by doctors and a research community that believes they are hysterical, or malingering, or have made up illnesses. That’s a tragedy that must be addressed.

  15. lolly Vann says:

    thank you for sharing your story.

  16. I was stricken in the fall of 1987 and was unable to get on SSDI because I was unable to get a diagnosis. The ignorance in the medical community was unconscionable, because there were dozens of people in my community with this catastrophic illness. It was cruel to send us home with advice to exercise more and stop obsessing over our health. It took eleven long years for me to achieve what I consider 85% recovery, and I am angry about the wasted time and the needless suffering. Rivka was an early ally and her activism is an ongoing inspiration. Thank you for publishing this blog.

  17. Lisa Hall, RN says:

    Kudos to Ms. Solomon for writing about this terrible illness! As a nurse, I have worked with many ME/CFS patients and it is hard to watch them go through the roller coaster of trying a new treatment, having some improvement, and then suffering an exacerbation that takes them right back to the bottom again. We must have research to understand what is happening in a person’s body with this condition, and how to really help them recover permanently.

  18. Nansy Mathews, CRNP says:

    Thank you for this article. I was a nurse practitioner working in medical research until I came down with ME/chronic Fatigue Syndrome. Now I spend most of my day in bed; I have a mild case which allows me to
    do one thing each day. Today I will be able to go to the grocery store, then back to my bed to recover. The lack of good information for the medical community continues to be a hugh problem; when I told my internist my symptoms he responded,” Nansy, I get tired too.”

  19. Thank you, Rivka, for bringing this neglected and often dismissed disease to national attention. Jen’s story in her film is inspiring, but there are so many other lives being lived with ME that are equally inspiring, like yours. We all need to learn more.

  20. Terry Baum says:

    This is very moving. Thank you, Rivka!

  21. Helen Abraham says:

    Thank you Rivka for your wonderful article. I have ME/CFS (Myalgic Encephalomyelitis) and have suffered with it for 31 years.
    It means a lot that you and others are finally talking about it openly. Thank you.

  22. This disease is devastating to millions of people all over the world and literally takes peoples live away while they are still living yet there is no diagnosis, no treatment and no cure. Most people, majority being women, who have this disease are not properly diagnosed and are not believed that they are sick yet they can not function like a healthy person and are most times, not able to live a normal life. We want to bring attention to those suffering to validate that they are indeed sick and that they may have this disease if they have these horrific symptoms and we want to bring awareness to the medical professionals and the public about this biological disease that devastates so many lives and families. Thank you for printing this very important story.

  23. This chronic, serious disease has been ignored for much too long, with devastating effects on those who have the disease and their families. The burden falls primarily to women. Kudos to Rivka Solomon for expressing the pain and suffering of this important issue so articulately.

  24. Thank you for sharing your story. I have had ME for 14 years and getting desperate as declining after so many years of illness. We DESPERATELY need medical help. I hope we get the funding we deserve.

  25. Carol Broadbent says:

    The author has done a heroic job educating the reader about this quiet epidemic — ME/CFS is a grave illness that can strike anyone of any gender, age, ethnicity or socio-economic level. My daughter was stricken 11 years ago. It’s a crime that our government, under the NIH, has not mobilized on behalf of the millions who are ill. Thanks to author Rivka Solomon for expending some of her precious energy to shine on a light on this terrible situation.

  26. Jes Gordon says:

    This is a wonderful article and I’m so pleased to see it here in Ms. magazine. I too fight everyday to hang on to hope as I face my health challenges with M.E.. It gives our community hope to see awareness spread as publications such as this give their attention to our illness. We are grateful!

  27. Michele Sherstan says:

    Thank you Rivka for this piece and all the work you do while so debilitated. People have no idea how difficult advocacy work is for people with ME (and people with disabilities in general). But it is so important that our voices are heard, that Rivka, Jen Brea, and so many more sacrifice/risk their health by speaking out, educating, and lobbying for understanding and emotional and research support. Thank you for your tikkum olam. xo

  28. Thanks you, Ms Magazine, for this article and it’s links , which are sure to enlighten many who have misperceptions or ignorance about ME. This illness devastates the lives of a disproportionate number of women of all ages, all over the world. Rivka is a truly courageous woman who advocates for the homebound, the bedridden, and those without the cognitive function or energy to advocate for themselves, though she suffers with ME herself. She is truly a Woman Who Dared, and continues to dare to fight for this social justice issue and health care crisis.

  29. Great article that is so much needed. There are too many of us who are disabled and without any availa le or approved treatment options. Thank you for writing this Rivka, and thank you to Ms. For publishing this vital piece.

  30. Suzanne Wilkins says:

    Thank you, Rivka for sharing your story. When we stigmatize a disease, we essentially punish those who live with it. When we talk about a disease using language that minimizes its impact, we devalue those who struggle with it as well as their families. People respond to things they can see and Myalgic Encephalomeyelitis has been invisible. Thank you, Ms. Magazine for shedding light on an illness that has spent far too long in the shadows.

  31. Susan Buckley says:

    Thank you, Rivka. Kudos to you and all who work to bring attention to ME/CFS. Let’s hope that the future brings more awareness among the public and the medical community, and more funding for much-needed research.

  32. Thank you for your advocacy and for helping to tell the story of people with ME/CFS. So many have been ill and without hope for decades. People are also being newly diagnosed every day and given a ‘life sentence’ of illness with little hope of treatment or cure.

    This must stop.

    Thank you for continuing to fight for us while struggling with your own illness. You are a hero to me (and ME).

  33. Sally Smyser says:

    An important article on a subject that needs to be much better known and understood.

  34. Sally Smyser says:

    This is an important article on a subject that needs much more information and understanding. Thank you Rivka!

  35. Great article! Thank you for bringing attention to this severely neglected disease.

  36. Deb Friedman says:

    Nice to see some attention being paid to Myalgic Encephalomyelitis in Ms.

  37. Amy Simpson says:

    True, CFS is a terrible name for this illness, but ME is not much better. Fortunately, a more accurate one has been proposed and ought to be included it discussions like this one:

    “The Institute of Medicine (IOM) in the United States proposed Systemic Exertion Intolerance Disease (SEID) as the new name for ME/CFS in their consensus report published in February 2015…

    “The IOM has stated unequivocally that SEID is a distinct disease, that people suffering with this disease need to be taken seriously, and that research efforts need to be supported to find a cure. However, the name is at odds with what the rest of the world calls this disease and still defines it by its symptoms rather than its underlying pathophysiology.” ~ Dr. Gary Kaplan, D.O. (Kindred Spirit Summer Special 2015)

  38. Thank you so much for publishing this essay on the disease I have suffered from for 23 years. In my case, I have been in a lot of studies, so I know something about why I am so sick. I have active HHV-6A and cytomegalovirus (CMV) in my spinal fluid, 2 neurotrophic AIDS diseases in the fluid that bathes my brain. My immune system tests out to be very abnormal. When given a CPET (cardio-pulmonary exercise testing), my scores are so low I would qualify as a severe cardiac patient.

    But when I told a CDC administrator about these tests, he said I didn’t really have the viruses. “You people test positive for viruses you don’t have,” he said. I was a published academic before my illness, so I maintained my composure and asked him where I could find the research on this assertion. He turned bright red and walked out of the room. While there are people at HHS who do care about us and our disease, we are still not taken seriously.

    I worry about where the people are who have no diagnosis. Many of my friends, mostly former professionals, have been impoverished by this disease. I know some who were rendered homeless.

    Publishing this story in a mainstream magazine is a good first step to getting recognized, cared for, and, ultimately, treated. Thank you.

  39. Susanna K says:

    So happy to see Ms. helping to shed light on this terribly misunderstood disease!

  40. Terry Gilmete says:

    Great job on this article, Rivka! I have had M.E. for 32 years and the lack of knowledge in the medical community, access to medical care, and treatment for this disease is a nightmare. I have had a doctor tell me that I needed to get married and that this was the heart of my issue! Several weeks ago a cousin who has M.E. went to see her doctor and he told her she didn’t have it and was going to fill out a referral for counseling (she had already been diagnosed by another doctor with it.) Thank you for making the world aware of our plight!

  41. I am so grateful to women who dare, to Rivka Solomon and Jennifer Brea, for refusing to cow to the stigma, for speaking up and speaking out. I have had ME/CFS for 30 years: three decades of dismissal, ignorance, and loss. Thanks to the efforts of women and men such as these, I am only now beginning to hope that the tide will turn to awareness, study, treatment, diagnosis, and cure. Thank you for your courage Rivka!

  42. Jenny Meagher says:

    Thank you Ms Magazine and Rivka Soloman for this important story. Rivka captures the pain of suffering from ME/CFS. She also outlines the medical neglect of this devastating disease. We patients are desperate for increased medical research leading to an effective treatment so that we can leave our beds at last.

  43. Leonard Jason says:

    Rivka–Excellent article and congrats for your many decades of heroic work.
    Lenny

  44. Well done Rivka! – thank you and Ms. for shining a light on this crippling, closeted disease. – G

  45. Thank you for sharing your story, Rivka Solomon, and for all your activism around ME.

  46. Thank you for sharing this inspiring story. The book you’ve written sounds like an empowering read; we need more books sharing the strength of women. It takes a lot of courage to share something so personal at an event like you did when you shared your experience with ME at the awards event. Sharing that personal struggle is empowering. You were able to do this social change work and write a novel while fighting a serious disease. You are the type of role model women need. They need to see a strong woman making a difference in the world despite her struggles. Thank you.

  47. I have been struggling with ME for 15 years. I am a 41 year old woman who recently had no choice for survival but to move from Texas to Massachusetts to live in a windowless room in the basement of my parents home.

    Thank you, Ms. Solomon, for writing and sharing this article. It helps me feel like I am not alone, and gives me hope that, by sharing this article, people can begin to understand our suffering and become aware of our need for funding. Hopefully it will also be an introduction to the disease for medical staff, as many doctors dismissed me because test results indicated that I was not sick when, in fact, I was actually very ill.

  48. Gary Powsner says:

    Thank you for speaking out. The world needs to hear your story.

  49. Thank you for writing this, Rivka, and thank you to Ms. for printing it. The time is perfect for people to speak out, see the documentary Unrest, read articles like this, and to read about the history, politics and medicine of ME and CFS in our recently published book Lighting Up a Hidden World: CFS and ME available online. These works support each other and those with our illness. All of these advocacy efforts really do bring ME/CFS into the limelight. Keep up the good work, everyone. It is sorely needed as many of us have been waiting decades for this to be seen and heard.

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