Rivka Solomon Acts Up, Chronic Fatigue Be Damned

Rivka Solomon, the daughter of 1960s activists, has long been a rabble rouser. Her 2002 edited anthology, That Takes Ovaries!, now in its sixth printing, still inspires action with its essays by women telling their true stories of “being bold and brazen, outrageous or courageous”–from rallying against sexual harassment to chewing out a burglar in the act. That book (and play of the same name) has spurred its own international movement, serving as a blueprint for at least 600 open-mike speak-outs and performances in which girls and women celebrate their own “ovarian acts.”

But the amazing part is that she has done much of this from bed.

In 1990, while she was a graduate student studying international relations, she got sick, as she describes it,

with an unknown illness from hell that took away all my physical energy and my brainpower. … The brain fog that accompanied–and still accompanies–the illness was scary. When I was halfway through a sentence, I’d forget what I was talking about. I forgot my own phone number. The exhaustion is so extreme, it is difficult to engage in routine tasks, like taking a simple shower. I crawled into bed and stayed in or near it for much of the next 20 years, and I’m still there now, to this day.

Solomon, now 48, who lives in the Boston area, was diagnosed with chronic fatigue syndrome (CFS), or what is officially termed ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome.

ME/CFS now has no treatment or cure, and typically creates extremely disability for the estimated one million sufferers in this country and 17 million worldwide. Adding to that suffering is the public stigma that it is all in their heads. As a result, the U.S. government has been resistant to fund research into the disease, with only an estimated $6 million allotted to it yearly.

So, following her own example of grassroots organizing, Solomon has been spearheading historic  protests in the U.S. to raise awareness of the problem. She began last year with a one-woman protest in front of the Department of Health and Human Services (HHS) and Red Cross headquarters in Washington, D.C.  She didn’t leave her bed to make her next protest video, a comedic one “where me and my family are demanding–via singing–’clinical trials now!’ for ME/CFS.’”

Most notably, in the past several weeks she organized two protests of patients, marking the first time they have taken to the street together in the U.S. The first was before the HHS buildings in D.C. and the second, larger one, was in San Francisco. She blogged about the San Francisco action, which was also covered by the San Francisco Chronicle.

Solomon and others are following the lead of activists from the organization ACT UP, whose public protests have spurred federal funding for HIV and AIDS since the 1980s. They also commonly point out possible similarities, both being linked to a retrovirus. Says Solomon,

There was a significant paper published in 2009 in the journal Science, and it found that a newly discovered retrovirus is found in high numbers in people with ME/CFS. Many of us feel like we have ‘AIDS-lite’; we are very very sick, but we don’t die as quickly from the disease.

Like her fellow protesters, Solomon has paid dearly for her activism, taking weeks to recover from each action. She was in bed for three days after last week’s San Francisco protest. But she hopes that her recent protests, like her book, serve as role models for others to stage such actions. She actively encourages other patients to stage protests at one of the 20 HHS and CDC satellite and regional offices across the U.S., even offering the concrete support of borrowing her homemade banner. As she says,

This issue is not going away. … Heck, if we have to drag our beds to an HHS building to make a statement, it is my hope that we will do just that.

For information about organizing your own protest for ME/CFS research, email Rivka Solomon at rivka@thattakesovaries.org.

Comments

  1. There is no such thing as ME/CFS. Let’s act up for something tangible. CFS is a heterogeneous fatigue syndrome and ME is a distinct diagnostic entity. Mixing them to be used with different meanings and context will not help and only further blurs boundaries and muddies the waters.

  2. Thank you Paula, Ms. blog, and of course my friend Rivka!

    Imagine what Rivka could be doing for women and the world if she were healthy. This is the cost society is paying times 17 million for ignoring (and worse) our plight.

    I know the price Rivka pays for her efforts. We all need to do what we can or we’ll gone and another 30 years will have passed.

    As always Rivka, thank you for you creativity, humor, and setting the example!

  3. Barbara Kell says:

    “This issue will not go away”. Too right Rivka, no matter how hard they try to make it go away we will not let them. Our strength is our numbers, thanks to them. Thank you for blogging. It’snot something we can all do.

  4. Thank you for shining a light on a disease that affects millions of men as well as women and children, all races, and in countries around the world. Rivka, who is not “healthy enough” to advocate, does it anyway. We need more people like her who have the courage to speak out, and thanks to Ms. and Paula for helping to crush the stereotype of the stressed woman in this disease.

  5. Forebearance says:

    I really admire your courage, Rivka.

    Thank you so much, Paula, for writing this blog post.

    I am yet another person with this really hard illness.

    It would be so great if you could write an article in Ms. magazine about this.

  6. We patients have wanted to Act Up for years but what we lack that AIDS victims had is a supportive community. We are too sick to do it alone. Many of our planned actions have fizzled because we don’t have the energy to carry them out. This disease is painful, exhausting and for 20% of us totally debilitating.

    The internet helps, and when we push ourselves as Rivka has that helps, and when someone famous mentions it as author Laura Hillenbrand have and writer-director Blake Edwards tried to (but nobody listened, for shame!)that can get us some more attention, but to make a really big noise we need the help of healthy people everywhere. Please, for your sisters, mothers, daughters, sons, dads, brothers, cousins and friends with neuro-immune disease, even for people you don’t actually know, please, healthy people, help us to Act Up.

  7. Lisa Petrison says:

    Thank you for speaking out for this illness, Rivka.

    There are many people who are even more ill than the people mentioned in this blog and than the ones who are writing comments here.

    They have been truly forgotten, and it is unfair.

    I hope that Ms. will consider covering this issue.

  8. CFS/ME patients actually have much more in common with other diseases than one may imagine. Things in common with autism, Cancer, irritable bowel syndrome, heart problems, migraines, the list goes on.

    Hope other sick groups realize the commonalities so we can band together and get authentic scientific research done.

  9. Thank you MS. magazine blog!

    Rivka has done us proud. (Thank you!)

    ME/CFS profoundly affects the lives of children, parents, friends, families, etc.

    My family will be happy to share our story (2 young males, sick for over 5 years) for the article MS should write for hard-copy readers.

  10. Kudos Rivka!

    By way of context, medicine has trivialized women’s illnesses for decades–till a test was developed to clearly diagnose each illness. Multiple sclerosis used to be called hysterical paralysis, women with lupus were often told they were neurotic, and even women with Rheumatoid Arthritis (with big swollen joints) were told “the tests are normal–you’re fine”. Till a clearly recognized and accepted test is developed.

    This will happen in CFS/FMS/ME as well, but there is no need to accept abuse from physicians who say “I don’t know what’s wrong with you–so YOU’RE crazy!”. That just a sign to get another doctor!

    To get an idea of the “Medical Mindset”,it’s not a coincidence that the medical word “Hysteria” comes from the word “Hystero”, which is Latin for uterus …

  11. Tink Bastian says:

    We have Aids-lite she wrote, which made me think back at around Christmas/New Year when I read a blog and discussed the contents with friends and we all saw this as a real possibility. The subject was getting infected with AIDS voluntarily, at least than we would have a right to treatments, a right to benefits, a would be taken seriously.

    How sad and how deep have we sunken to wish that we had that deadly disease. How desperate we are!!!

    In fact we do have a deadly disease, it only kills you slower than AIDS does. I have lost so many friends to this disease last year, either as a result of having ME/CFS or by their own hands because living in this hell was more than they could handle. The pain of loss, the anger, the grief, is the same. How many will have to die before it’s my turn? Before the government start taking notice?

    Thank God for all the advocates, the ones that are still able to rally people and organize. Until a few years ago that holy fire was also still burning inside me, me being the one who burned her bra in the 60′s on the barricades! That fire is still flickering but I can no longer undertake the actions I would love to take. I look up to people like Rivka and take my clues from them and let the adrenaline flowing one more time. Just say the word Rivka and I’ll be there with my bed!

  12. My partner suffers with ME/CFS and it is heartbreaking to watch her struggle. My hat is off to you Rivka and all your good work, you are amazing. And many thanks to Paula for interviewing you and helping to bring attention to this much misunderstood disability.

  13. Rivka is truly an inspiration and I am so grateful she and Ms. are doing a piece on chronic fatigue syndrome (CFS) or chronic fatigue sydrome/mygalic encephalitis (CFS/ME). My background is in the field of psychology and I also suffer with CFS/ME myself and I have been appalled at how bogus psychological “research” has been wrongfully applied at times to distort the true nature of this health issue. CFS/ME needs to be studied and treated like other health issues such as MS or diabetes. As I have realized the sexism and lack of humanism and the dirty politics swirling around this illness for apparently more than 25 years I have become angry and deeply disappointed in the ulterior motivations that can muddy “science”.

    I suggest Ms. take this further and interview also, if possible, individuals such as researcher Judy Mikovitz from Whittemore Peterson Institute (WPI) who coauthored an important paper on retrovirus XMRV, or Dr. Paul Cheney who originally reported CFS to the Center for Disease Control (CDC)– which from news I have read has done nothing but bungle it from the get go…..an excellent resource on this is the book “Osler’s Web”by Hilary Johnson for the history of science and politics around this health issue. (Hilary would be another excellent choice for interviews on this topic as would Dr Jamie Deckhoff Jones). It was chilling for me to learn in some of these resources that a former NIH official allegedly intentionally encouraged physician training around the country in early 90′s to view CFS as more of a neuroses and he discouraged emerging important retroviral research coming out at that time by scientists such as Elaine Defreitas.

    I am thrilled that today folks like Rivka and others have been able to organize and use some of their precious energy to make the government and rest of the world more aware of how many of us there are and how little has been systematically done to institute appropriate care at clinics around US and UK even though many have collected very useful data on CFS the last 25 years. Right on sister! and I look forward to seeing more in Ms. on this topic and what we can do about how it is an area of health still stuck in dark ages — similar to how MS patients were treated like hysterics not too long ago…..hard to believe this still goes on in this day age.

  14. Deborah Waroff says:

    Good piece. Let’s see some press coverage on government officials’ cruel and prejudiced neglect of this disease for the past quarter century. This has been against the best interests of our nation, as one million citizens are severely disabled. Many have been knocked out of the work force, and almost all have seen their ability to function as part of their families and communities severely reduced. In dollars and cents the cost to the nation is estimated somewhere between $20 billion and $50 billion annually according to government and academic reports. Much of this is due to patients’ loss of productivity.

    If the government had done its duty on ME/”cfs” the US deficit would be reduced by billions and billions of dollars EVERY YEAR.

    • Kelly Latta says:

      It’s interesting that the congressional appropriations language in the 2010 AND the 2011 CDC Congressional Justification of Funds, specifically direct the CDC to do more virological etiology studies in CFS and follow the recommendations of the 2008 Blue Ribbon panel.

      Some might consider it unfortunate when it takes congressional urging for a government entity such as the High Consequence Pathogens Division of the CDC to focus on virology.

      Will the CDC do so and who will they study – oranges or apples? Or will activists like Rivka feel forced yet again to push the issue at great personal cost?

  15. Go, Rivka! What an inspiration you are. I have an invisible disability (chronic pain), and I really appreciate your activism.

  16. Thank you for this article on CFS/ME. I admire Rivka Solomon and all the other activists who are uniquely protesting the lack of serious attention to their disease. Can you imagine a world wide protest one small group at a time? I am amazed by the creativity and persistence and energy expended by this crew of disabled people, who are storming the world through small protests and internet coverage. This is an idea whose time has come. Maybe their spark will create a great, rousing fire in the hearts of doctors and researchers–this is what is needed. This is a new twist on ActUp, who was so successful in turning the attention to the AIDS crisis. I know persons with chronic fatigue syndrome/ myalgic encephalolitis for many years. These persons are not kooks–they are sick–yes, fatigued, with brain fog, body pains, digestive problems, depression, headaches, etc. They were once well and they know what well feels like. They are sometimes bedridden but they push themselves to do something, which isn’t always a good idea. Let’s be there for them! Power to the sick people of this world! Let’s enable them to get better. Let’s believe in their illness. I am so proud of them and this action!

  17. Thank you so much for this article. My son who is 20 has also lost important years becoming ill after having mononucleosis at the age of 14. We need more awareness for this disease and appreciate not only the work Rivka does but anything that helps bring this hidden illness to light.

  18. Thank you, Rivka and Paula. I sincerely hope that MS will follow up with an in-depth article on CFS/ME.

  19. This is an important story that very much needs to be heard. I understand that the U.S. govt spends about $6 million a year studying this illness. DO YOU KNOW HOW LITTLE money that is? It is really ridiculously minimal. I lobby for a living and this amount of money is like a penny (or less) to the Hill. They don’t even pay attn. Let’s start asking our govt to pay its fair share of our taxes to help heal this illness.

    Aviva

  20. Flo Henson says:

    Lately there have been a lot of articles by writers who are contemptuous of people with CFS, so this wonderful description of one woman’s activism is a welcome gift. Thank you, Paula Kamen. Thank you Ms.blog. Thank you, Rivka!

    If Ms. does more blogs or stories on this subject, I hope they will interview two outstanding bloggers–Jamie Deckoff-Jones, M.D. and Mindy Kitei–who cover the CFS patients’ struggle for respect, research and treatment with enormous passion and intelligence. And, of course, I hope Ms. will interview the feminist of the century—our favorite scientist, Dr. Judy Mikovits, at the Whittemore-Peterson Institute.

  21. We’re all so proud of you Rivka. <3

  22. Thank you Rivka for your activism on behalf of so many! And, thank you Ms. Blog for publicizing her efforts. This is a huge societal and personal problem that is not being addressed.

  23. thank you rivka! i don’t know any other way sometimes than to protest and be angry! even my friends with HIV are way more active than i am. once there was a test for their infection, people knew they were sick *before* they were actually sick. by the time those of us with neuro-immune disease (better name than that belittling “fatigue”) know we’re sick it’s too late to be able to speak or think or walk around or be outside. and even if the latest research doesn’t pan out, there are doctors out there who *know* that ME/CFS is an infection of some sort. they just don’t know what kind of viruses/retroviruses they are dealing with yet; it’s become a political mess that needs to be exposed!

    even when other understanding doctors do believe that this illness is real, they often end up blaming the victim (it’s our diet, we do too much exercise, we do too little exercise, we eat too much this & that or too little of the exact same things, etc.) so fine, they think, the symptoms are not in our heads — they are real — BUT the cause is still our fault, the result of our behaviors, and if we only changed our diet/lifestyle/mindset/religion/home/exercise routine/outlook/marriage??? well, you get the picture.

    i just keep spreading the word, ignoring the naysayers, getting p-ssed off… keeps me from getting depressed. please Ms., more article like this. more articles about how much research goes into other conditions but not this one that kills slowly. although sometimes i feel like i already died eight years ago when i got sick. in many ways, my life did end.

  24. Thank you for publishing this.

    There are many people like Rivka who are debilitated by illness for which modern medicine has no adequate diagnosis, and certainly no adequate treatment. It is sad to me to see the ire that this produces in people. It is not Rivka’s fault that modern medicine has failed her. You need spend only a few minutes with someone with a diagnosis of Chronic Fatigue Syndrome (CFS) to realize that they are truly sick. The fact that the diagnosis is non-specific is of no importance. Modern medicine, when it cannot accurately diagnose a problem tends to translate the patients complaints into latin (ie-fibromyalgia) or jargon (ie-chronic fatigue syndrome), or both (ie-myalgic encephalomyelitis/chronic fatigue syndrome) and then hand these back to the person as their diagnosis. These vague diagnoses are created to acknowledge that the person has a real problem, we just don’t yet know what it is or what to do about it.

    There is hope. One of the most under-reported facts about retroviruses like XMRV and AIDS is that we find people who have antibodies against these viruses who are not now sick, and who have no history of illness related to these viruses. It is as though they were infected, and threw off the virus as though it were a common cold, leaving only an antibody behind to mark that it was ever there. Some of the most exciting research on retroviruses now is looking at the chemistry and immunology of these people who were infected but not sickened by the bugs.

    Much research is needed, and much education to overcome the obvious ignorance that exists in our society about these illnesses. They are common, and becoming more so, and it would serve us all to act now.

  25. Thank you Rivka for bringing this misunderstood and quality-of-life destroying illness to light here. I would hope that the health effects of over 80,000 chemicals on the market today will be taken into account when the causes of CFS/ME are discussed. The human body was never designed to withstand this onslaught and until we as a society recognize and act on the truth of our dependence on nature—not the reverse—we will continue to destroy our health and the health of our children.

  26. Where painfully few have had the strength of charracter to speak up about the unending torture of living with this brutal disease, Rivka and Paula are that light in the dark. In years to come, when everyone will know the truth of the inertia by the medical profession, many will clamber to claim that they supported ME patients all along but we will all know and always remember the few brave souls who truely have made a difference in taking courage to speak out, to interview and write articles and those editors who are savvy enough to see the real truth of this story and put ink to paper to reveal this largely untold story.

    Thanks for leading the way!

  27. I have cfs but also have adrenal fatique and thyroid issues. I have had this for over 20 years. Seen many alterantives. I am a health coach also I never give up to doctors and drugs. I now am on hydrocortizone and a natural thyroid med. I also take many nautual supplements. Not from a local store. I cannot work out hard. I walk gentle for 40 minutes. Have a great diet. There is always cause for desease. Its all this immunity stuff. One thing fixes another. WE are a whole being. Its krazy frustrating but i am getting my answers and NOT with a doctor diagnose. be your own doc.. blessings and love darlene

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