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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.

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% 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 guidance provided 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, 2017. UNREST, a Sundance Film Festival and Boston Globe (GlobeDocs) 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.

 Rivka Solomon is a Massachusetts 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 (May 12th).You can reach her on Twitter (@RivkaTweets). Portions of this article were first published in Ms. magazine (online). Feel free to contact her if you are interested in co-sponsoring the upcoming screening of Unrest.

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62 Comments

I just read about you, Rivka, and you are amazing doing what you do as a person with ME.

I live in R.I. where there is no support groups or an organization for CFIDS/ME. I have lived with CFS for 26 years.  I was actually doing fairly well for some years(with not getting any help from any health care professional)and this fall had a bad relapse with a multitude of symptoms besides fatigue.  This has been very depressing for me.  Especially since  I can't find anyone I can go to for help.  At my recent visit to my MD for an annual check-up, she told me there is no cure and I will just have to live this.

My prayers and wellness wishes to all of you out there trying to live your life and coping with this little understood and researched disease.

 

 

 A powerful & beautifully written piece; this is an inspiration for all of us who are living with ME/CFS. Rivka honestly shares how we can be advocates without carrying the mantel by 

ourselves  Eivkascaffolds the advocacy events whil enlisting colleagues to spearhead them  I was lucky to meet Rivka at the End ME/CFS Open Medicine Report by Linda Tannenbaum, sponsored by Massachusetts CFSID. She inspired me to take action in upstate New York.  

Sorry I can't make edits to the above, very frustrating! Suffice it to say Rivka is doing important & powerful work. Thank you!

ME symptoms are similar GWS, slow arsonic poison,etc. In searching fluoride, 1945 Gov put in our water, then food, pesticides. Saying its'Good for us,' so good that Hilter used it, it had different affects on the people than. Usually worse for people with high acidity. Fluoride Weakens immune system any trigger and we're down. I live in farmland, I've seen jets dump orange stuff. Affaid at the time, not knowing what was going on. That was 26+ years ago, since then dad & siblings all had Alzheimers etc one who's afraid he'll be next. His daug has MS, 2 cuz had MD, some other cusions now have Alzheimers, I have ME & have wondered why my family seemed to be cursed. We've all had heart problems. I used to wonder why it wasn't standard to run poison panel at autopsy & for mysteriously ill patients. Now I wonder if this is why, it might also explain why money never goes to this disease. When you find out the old head of CDC got money for us & wasted it you want to strangle him along with FDR for putting it in the water & so on. Another note, affordable healthcare, we need it, but take caution, Hitler also used this tactic to see 'who was worthy'. Odd, he didn't fit his own definition of worthy.

Thank you for sharing this very important and insightful story. Rarely a month passes that I do not meet a person or family member impacted by this serious illness that remains elusive. The patients I meet are extraordinary, usually in the forefront of their careers or communities until they seemingly disappear behind closed doors without appropriate medical attention. I feel ill with many of my travel abroad college classmates overseas July 5,1985. I was fortunate to have received a diagnosis and medication immediately. Such would not have been the case if I had come down with the worse flu in my life at home. We need everyone’s help to push past the roadblocks of dead weight blocking funding already deemed necessary by Dr. Colin’s the director of the National Institutes of Heath.

Thank you, JWA, for sharing Ms. Solomon's story. It's heartbreaking, and important.

Rivka - Thank you for pushing through on writing this essay, on promoting UNREST, on speaking out to Ed Markey, making the Congressional Briefing happen, on talking and sharing the stuggle with everyone and in any way you can.  What Chutzpah!  Your determination and persevearance is inpiring.  Bless you.

Rivka - very well expressed. For decades - with no identified physical cause - ME was attributed to psychological factors - undoubtedly because the vast majority of those affected were women. With the publication of the 2015 National Academy of Sciences Report, that myth, while unfortunately still believed by some, has been scientifically debunked. As you point out, research funding, despite having just been increased, continues at a pitifuly low level - absolutely inexcusable.

Wonderful essay, Rivka!  I am so happy that we are working together on the screening of UNREST at the Regent on November 12th. You are an inspiration.

Thank you, Leah, for working with me on this important event!

Thank you, Rivka, for this beautiful essay and for all that you do to advocate for people living in spite of this horrible disease. You inspire me every day to continue to work to bring help and hope to those among us who are so sick.

Thank you, Charmian, for all you do with the MA organization for ME (MassCFIDS/ME & FM)!

Thank you for so adeptly sharing with the world the reality of life with ME! I will never forget the fateful day 12/24/09, when the never-ending flu ended my career as an RN and my incredibly, active lifestyle. The horror of not understanding why I could not get up despite a deep desire to do so and seeing doctors who appeared to have no idea what was wrong was terrifying. No patient should ever be subject to such trauma! I remain homebound, but no longer bedbound after spending the first five years being so. My blood pressure and heart rate were skyrocketing every ti I stood. I finally got a diagnosis of POTS and treatment with IV fluids allowing me to tolerate sitting up and finally stand long enough to manage my own personal hygiene! God bless you all as we celebrate each victory along the way!

Thank you Rivka for this well written essay and for continuing to speak truth to power to educate others about the realities of life with ME.  As a member of the "ME Community" for almost 32 years now, I am sincerely grateful for your advocacy work on behalf of all of us.  You, Rivka, have made and continue to make a difference in this world and I thank you for that.  Thank you also to JWA for posting this article so that it can inspire and empower others with this illness.

Kol Hakavod Rivka for your advocacy, writing, strength and courage. May you efforts continue to help our path to lead us from strength to strength to increase research and find answers to help millions of patients worldwide. 

Thank you, Rivka, for raising your vital voice on this issue and for sharing your story.  It WILL make a difference - in people's lives and hopefully, in policy/funding. I so much applaud you and your work. It helps other activists (like me!) to carry on! 

Thank you, Elayne, for your powerful support!

Rivka, Thank you for reaching out with such authenticity.  Our stories need to be told.  The men and women I have met challenged by ME/CFS are intellegent dynamic individuals who have been snuffed out of life as we once knew it.  All our dreams and plans put on hold and replaced with the struggles of existing from moment to moment.  The amount of courage, inner strength, and sheer determination needed to face each moment of each day is highly commendable in each one of us.  Especially, in the face of a medical and public  society that has refused to see us.  This is an illness that for many of us has caused significant social, physical and cognitive isolation.  

Libby, that is so well put. Thank you for sharing it.

Hi Rivka! Glad to see that you are still writing and fighting along with all of us with disabilities. You are one strong woman despite any words used to otherwise describe you. Writing through the pain is an extraordinary feat! Blessings.

 

Thank you, Judith, for being a role model of strength and courage. - Rivka

thank you Rivka for this great article telling the realities of living with ME. It is so important to raise awareness of the medical neglect for so many years and so little research funds and much more! We all need a chance to live life again not be alive and not living! Great work!

Matina, it is true. Living with this disease is not truly living. Not if you have to be bedridden for decades on end.

Thank you, Rivka, for this great article and for all your work for all of us. 

Thank you, Janet, for your kind words.

Rivka, thank you for sharing your powerful story.  Too many years of indifference on the part of the medical community charged with keeping our citizens safe have endangered our friends, families, and our own bodies! There is no excuse to hide behind ignorance now. The technology is available, the truth are now visible in the labs, and the degree of disability is well documented.

What you wrote, Lolly, is so true. There is no excuse for government indifference towards 1 to 2.5 million disabled Americans.

Rivka, you are an amazing woman and it is fascinating to read about your work. Thank you for   your part in "repair the world" and thanks JWA for sharing this story with us. I look forward to reading more about Rivka's success in activism from her bed and hope she is well supported by all of the communities she represents. 

 

Thank you, Sasha, for your generous note of support.

Sick 30++ years, bedbound and housebound for 6, diagnosed 2(two)years ago. This is an important health and womens issue.and the film is amazingly well-done. Thank you for speaking out.

Jayne, that is terrible. I'm so sorry. And it has been 27 years sick for me. So a similar timeline.

Thank you JWA for publishing this article. I have suffered from this disease for 12 years, and have lost several family members to it. We need funding and treatments now. Thank you for the work you do Rivka, especially when it comes at such personal cost. Excellent article.

Jenny, it is so sad that you and so many others have had this disease so long. But to on top of that lose several family members to it is tragic. I, too, have lost close friends to this disease. The pain will always be there, especially since we know with more investment of resources (research funding!) we could have solved this disease years ago.

Excellent article! Thanks for getting the word out. 

Great article about something so important and urgent. Thank you JWA for spreading awareness. 

Thank you JWA for sharing this beautifully written yet heartbreaking essay about ME. Raising awareness of this devastating disease in the Jewish community and others will hopefully lead to more research funding so that treatments, a cure, and eventually methods of prevention will be developed to finally end the suffering of so many amazing people.

Thank you so much for this!  I am a Jewish woman with Severe ME as well, it's so good to hear another voice advocating for us and raising awareness.  I often wonder if there is much that I can do from my bed to do the same, and it's hard to come up with anything.  I am inspired by you to keep looking for a way.  :)

 Thank you, Rivka, for spending your precious energy writing to bring more awareness about ME to everyone!  Your story is inspiring, your activism has clearly made a difference! 

Thank you, Jewish Women Amplified, for recognizing the relevance of this essay! With so many women undiagnosed, it is bound to help someone recognize their own symptoms and perhaps find help and hope! 

Thank you for sharing this in the Jewish community and for all the work you do to spread the truth about ME despite your illness. My father was a British Jewish
Doctor of renown who contracted severe ME in the Royal Free epidemic. I am my son's carer as suffers from ME, too. 60 years on the truth is finally being believed. Thank you.

Claudia, I'm so sorry that your family has been so impacted by ME. Your father's story is something that interests me. Please contact me via the Jewish Women's Archive staff.

With all due respect, I think it's wrong to state that there are no treatments for ME/CFS, when in fact there are quite a few that have been proven in studies to show benefit, like B12/folate, l-carnitine, co-enzyme Q10, and others.  They may not be drug treatments, but that's because that the dysfunction is due mainly to mitochondrial problems, which these and other nutraceutical interventions help support and improve.

We have no approved fda treatment for ME. It’s been 30 yrs and iS unacceptable. We have to many in the severest form of MR needing treatment and research. The ones you mention just treat some symptoms. My only chance at living a normal life is for an approved treatment

I agree it is unacceptable that the government has neglected research into our illness. But I disagree that the things I mention 'just treat some symptoms'. They support and help reverse biological problems that result in those symptoms, rather than drugs, most of which just temporarily cover up symptoms like pain, while doing nothing to correct the cause of the pain.

Regarding severe ME, please remember that Rituximab was the drug that made Janet Dafoe's son Whitney a lot worse. He was partially bedridden when he started it, but completely bedridden 9 months later. He lost the ability to read and write because of that drug.

None of those have made the tiniest bit of difference for me in terms of energy level or PEM, including regular shots of B12. All that did was exhaust me from having to drag myself to the clinic every week, and I ended up going from a level that was deficient to one that was critically high without any positive change to the way I felt.

I have Ehlers Danlos Syndrome as well as ME, which means that my collagen is defective. Taking collagen supplements obviously does absolutely nothing to treat EDS because the collagen is "broken". With ME, our mitochondria are "broken", and also can't be fixed with nutritional supplements. Much the same way that someone with a broken arm can't take supplements that support healthy bones to treat it without getting a cast. There is no "cast" for ME. There are no treatments for ME. Supporting and improving mitochondria that are broken to begin with doesn't really do anything. Until science figures out how to reset the broken mitochondria to bring them out of their dauer-like state, there is no treatment for ME.

If you have Severe ME and you have found things that help you feel better, I'm genuinely glad for you. Those things are in no way a "treatment" for ME though, and by characterizing them as such, you are delegitimzing the extremely disabling nature of this disease.

I'm sorry you feel that I'm "deligitimizing" the disease Robin. That certainly wasn't my intention.

I guess we'll just have to agree to disagree, but I would encourage you to look at your analogies and reconsider them, as there is evidence that contradicts some of your conclusions, especially that 'there are no treatments' for ME.

As for broken bones, there are several studies that show the benefits of calcium and vitamin D on healing rates.

I think you missed my point. Calcium and vitamin D can not heal a broken arm without a cast. You can take all the supplements you want to try to make you feel better if you have ME, and that's great if some of them do that, but there is no cast. Since I am bedbound most of the time, I have all the time in the world to read every bit of new research that I can find, and as yet, there is no cast. You can ask in an ME support group with thousands of members about every single thing that some people have found helpful, and you will find just as many people who got no benefit from it. That doesn't qualify it as a treatment.

I agree that what works for some won't work for others, and yes, might even make them worse. That's because this is a heterogeneous disease. We all got sick from different triggers, different causes, so of course treatments will differ.

But that doesn't mean they aren't treatments IMO Robin. It just means there is no magic pill for this illness, just like there's no one magic pill for cancer, because there are so many different types and different causes of cancer.

Anyway, best of luck to you.

Thank you, Kelly, for sharing your thoughts. I have indeed found B12 to be helpful (though not the others you mention -- even though I have tried them a few times). The trouble is, I'm still bedridden and homebound most of the time. So whereas the B12 is helpful, it does not really do too too much to make my life easier. It is true that some people with ME will find something that helps. It could be antiviral meds, it could be diet, etc. But there are no FDA approved treatments for ME, and that is because the government has failed to seriously study ME for the three decades I have been sick. There is a US gov't study happening now, but any treatments ideas to come out of it will take many many many more years. A long wait when each day is hell in your bed.

Thank you for your kind reply Rivka. I too am housebound, and was very close to becoming bedridden, but found that b12 and especially folinic acid helped at least stop me from becoming weaker.

I totally agree with your comments that we'd all be in much better shape had the FDA taken this seriously 30-40 years ago! As you say however, it will take many, many more years before any drug is approved, and so I'm trying to do what I can to support my body (including yes, the mitochondrial function), especially since it's unlikely that there will be one answer for such a heterogenous disease.

Thanks again for your hard work!

Thank you from the bottom of my heart for raising awareness to this very debilitating illness for which I and many have suffered for decades. Thank You to Jewish Womans Archive for having this article presented for all to see. 

 

 

 

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Blog author, Rivka Solomon, has ME and works to raise awareness to this underfunded chronic illness. The documentary Unrest is recently released and explores the realities of this illness. 

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How to cite this page

Solomon, Rivka. "A Woman Who Dared, with ME." 24 October 2017. Jewish Women's Archive. (Viewed on November 19, 2017) <https://jwa.org/blog/woman-who-dared-and-me>.

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