Pain and Prejudice

I couldn’t turn over in bed.

Amberlin Wu (at left with her caretaker) was bedridden by ME/CFS on and off from 1995 until her death in 2011. Katie Steward (right) was once a serious horse rider; now she’s too ill to even eat. Light, sound and touch can be unbearable for her.

My head would lift a bit, I could get part of a shoulder up, but even when I groaned with effort, my spine didn’t budge. My muscles weren’t responding to my brain’s requests.

My brain itself wasn’t functioning so well either. It felt swollen, as if it were trying to push out my eyeballs. Speaking required spearing the words one by one before they scampered out of my head. Thinking hurt, so mostly I didn’t do it, retreating into a twilight zone, alive but not living.

Until a year earlier, I’d managed to live a full if constrained life in spite of my decade-long illness. I’d applied every bit of determination I could muster to build my career as a science writer, to be a good partner, to hold on to my dreams and ambitions, despite getting stuck in bed unpredictably for days or weeks. But now I was too sick to even care for myself. I had run out of medical treatments after going to the top specialists in the world. Not only that, but I was running out of money, and I’d watched fellow patients repeatedly get turned down for disability payments. I felt as though I’d fallen off the edge of the earth.

The very name of the illness that had so totally derailed my life sounded like a joke, as if it were nothing more than ordinary life in our too-fast age, the complaint of someone too lazy to keep up. The words stung my lips with insult: “chronic fatigue syndrome.”

Though I felt like I was suffering in my own private hell, more than a million Americans shared my fate. Worldwide, the number is estimated at between 17 and 30 million. Though the disease has been characterized as the “yuppie flu,” it is more common in poor people. It occurs in all racial groups and ages but most of us are women—around 80 percent.

Hidden in these numbers is astonishing suffering. Patients with chronic fatigue syndrome (CFS) have the lowest quality of life and greatest disability of any disease tested, including lung disease, rheumatoid arthritis and heart disease. A quarter of us are homebound. In 2014, a quarter of Canadian patients had less than $20,000 a year in income, and more than a quarter lived with food insecurity, the highest rate of any disease. Because CFS can disable people for decades, its economic impact is huge: In the U.S., it accounts for between $18 billion and $24 billion per year in medical costs and lost wages.

But public health agencies have treated chronic fatigue syndrome as if it were the jest the name suggests. The Centers for Disease Control and Prevention (CDC) chose and promulgated that insulting name even though internationally the disease is more commonly known as “myalgic encephalomyelitis” or ME (literally meaning “muscle pain and inflammation of the brain and spinal cord”). The CDC then worsened its mistake by using absurdly broad definitions of the disease that include many people who are chronically tired but don’t have CFS at all, scrambling the research and confusing doctors. In particular, their definitions don’t require the hallmark symptom of the illness: Even slight exertion can exacerbate all the other symptoms of the disease. And medical schools rarely train doctors about ME/CFS at all, so few patients can get skillful medical care.

From Unrest

Also, for years the National Institutes of Health (NIH) invested only $6 million a year in research on ME/CFS—six bucks a patient. To be comparable to other diseases with a similar impact, that budget would need to be $150 million or more. In 2000, the disease was moved to the Office of Research on Women’s Health, even though some 200,000 men have the disease, and the funding dropped immediately and steadily. Contempt for the illness at the CDC was so great that even when the U.S. Congress set aside money for ME/CFS research in the 1980s, the agency used that money for other purposes—and then lied to Congress to cover it up.

Furthermore, much of the pitiful bit of research money has gone to scientifically flawed studies claiming that the disease was substantially psychological. In 2011, the crown jewel of such studies was published in The Lancet and ballyhooed in the media worldwide: the $8 million British PACE trial, which claimed that psychotherapy and exercise could help or even cure CFS. None of the news articles mentioned the shocking scientific flaws in the study, including, most amazingly, that patients deemed “recovered” could have gotten both more fatigued and more disabled over the course of the trial.

Psychotherapy and exercise became the worldwide standard of care, backed by recommendations from the CDC, the Mayo Clinic, Kaiser Permanente, UpToDate, the British National Health Service and many others. Those recommendations aren’t just useless but potentially dangerous, given that the chief symptom of the disease is that exertion can make patients worse.

“When I got into this, I was like, ‘Are you kidding me?’” says Mary Dimmock, a biochemist who retired from a 31-year career in research and development in the pharmaceutical industry after her son was disabled by ME/CFS. She became an advocate and wrote Thirty Years of Disdain: How HHS and a Group of Psychiatrists Buried Myalgic Encephalomyelitis. “This isn’t science or medicine as I had come to know them,” she writes, “but rather a parade of psychogenic bias, neglect, bad science, flawed public policy and the political agendas of powerful people and institutions that have sentenced ME patients to the medical equivalent of the most squalid slum in the poorest country on earth.”

Carol Head, president of the Solve ME/CFS Initiative, likens the situation to the way that autism was once blamed on cold, unloving mothers. “I think similarly people will be ashamed of the views they had of ME/CFS in 2017,” she says. The dismissiveness arises partly, she says, because it is a genuinely complex illness that isn’t yet diagnosable with an objective test. But the stigma is also driven by the trivializing name—and the fact that it predominantly affects women.

“We all live in this myth—it’s 2017, this can’t still be happening!” Head says. “It’s clear to me that it is with this disease. This is one of the areas where women tend to be marginalized.”

This is an excerpt from a feature in the Winter issue of Ms. Subscribe today to read the rest and become a member of the Ms. community.

Unrest, a documentary about ME/CFS, will be broadcast on PBS/Independent Lens on January 8th. If you are able, you can join the Solve ME/CFS Initiative in hosting a small screening in your home between January 5 and 14. Hosting your house party is free, and their team will help you every step of the way. Sign up here to get started!

Julie Rehmeyer is a contributing editor to Discover and the author of Through the Shadowlands: A Science Writer’s Odyssey Into an Illness Science Doesn’t Understand.

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  1. John Economides says:

    Thanks for bringing more awareness. 51 yo male, life stolen by cfs.

  2. Gwendolyn Anne Shuler says:

    I feel that I have been categorized as lazy, whiny, over-medicated and the list goes on as I’m sure you have heard many times before. It is degrading and deflating. I was blessed to have a ver smart compassionate Doctor when I started with bad symptoms. Symtoms that went by me as just normal from working in school, she had not missed nor left as non-specific.
    At 40ish I was able to “begin” college and was beyond thrilled. After last exams and as a rising junior my friend and and I were elated. Our program went straight through without breaks to allow us to complete in 3 years. That day a large truck hit us and although not really injured the nasty side of my illnesses showed their ugly faces- fibromyalgia connected with CFS. The constant infections and lowered immune system were precursors to the pain, fatgue, mind bog and quick sand I now lived in. I had quit school and work, hence I’m lazy. I had a wonderful loving husband who supported me 100 %. He passed away 13 years ago in 2004. My Mother was also a great ally but she passed away in 2008. I live with my youngest son and they are very good to me. He has been an amputee since 17 and is an arborist. This is really too physically hard for him but he keeps pushing. Our home is and has been in disrepair for a long time but as I’ve read, we as a group are in a low income group. Thank you for listening.

  3. The medical community didn’t want to believe in multiple sclerosis at first either. That is, until the CAT scan and the MRI came along. It took the technology to catch up with the disease for the sufferers of the disease to get any Quality Care. Well now the technology is catching up with MECFS as well, and I’ve been waiting over 35 years for an answer. I hope it comes soon, in the form of good treatments, and doctors that are willing to listen and then act.
    The galling part of this is that the medical community keeps making the same mistake over and over again. And that mistake is to assume that a patient is making things up, or outright lying. Especially if the patient is a woman. The hard fact is that doctors need to learn this lesson once and for all, that sometimes medical problems are complex, and that if it’s hard to believe, and multiple patients report it, they’re not making it up. And with MECFS as in MS, you couldn’t make this up if you tried.

  4. Petronella Perret says:

    Yes yes yes all this and more. When will my former friends start to believe me?

  5. A very important article on a very important topic. Thank you to the author and to Ms. magazine for publishing this story.

  6. Thank you so much for highlighting this very important issue. ME cost my children their childhood and stole my joy. My husband at the time was clueless and I felt dead for years. I had to work through those dark and terrible years all the while feeling like a corpse. I had no option. I would do anything to have those years back with my children. Then on June 5th 2012, I was severely floxed by 1 Cipro antibiotic. My brain fog never fully recovered from the ME and now it’s back with a vengeance.
    Please keep me (us) in the loop of new (natural) remedies for brain fog in particular. I would be ever so grateful.
    Thanks again. I hope you have a great 2018.

  7. The doctor disability sent me to for an assessment breezed in, asked a few questions, had me squeeze his fingers (and yes, i had been working as a massage therapist and have a strong grip). He told disability that i would be fine working 6 out of 8 hours a day, that i could routinely carry 25 pounds and on occasion carry 50, and that climbing ladders would be no problem. !!! I become dizzy and sometimes have vertigo if i am upright longer than 1.5 – 2 hours at a time (less if i’m doing something demanding and have to be reclining for several hours after to recover). I might be able to carry 25 pounds for a small distance, occasionally, but then would need time to recover. I have some balance issues but more, i have tonic/clonic (grand mal) seizures with no warning. I definitely don’t want to be climbing ladders. All i can say is, idiot.

    I LOVED working my job and would be back in a heartbeat if i could do it. But not many places allow you to work 45 minutes to an hour and then 3 hours recovery time. PLUS, the fatigue issues are cumulative. I might manage one day – but then i’d need 2 off for recovery. Then when i went back, i might manage 1/2 day, but then would need 3 off to recover. Etc. But i’d never know if i would have a seizure or something in the middle of a scheduled appointment, and so i cannot be dependable or reliable. I can’t even care for friends’ children. I did too much over Christmas, and i’m finding that even with several days of rest, very little effort now is tipping me over.

    I try very hard not to say much about it all, and try not to sound like a whiner or hypochondriac, but i am SO frustrated. I want to live a life not be trapped in a body that doesn’t function.

  8. At long last the general public is slowly becoming a bit more aware because of articles like this being published in mainstream publications. Thank you for all the effort !! I have had this disease (progressive in my case) for 50 years. I’ve been treated by doctors with extreme derision and disgust at worst, and neglect and ignorance at best. I can’t tell you how many courses of antidepressants I’ve swallowed because for decades I was convinced I was to blame for being psychologically deficient. Eventually I lost everything that matters and live in isolation waiting, waiting….. Every day I wake up hoping against hope that today will be the day that a definitive test becomes available so I can at least have the satisfaction of feeling vindicated, if nothing else. A cure would be nice too 🙂 And soon with a bit of luck, because I’m getting on and I would die happy to have even just one day of feeling like ‘normal’ people do.

  9. This kind of response exists with so many chronic illnesses and especially those that predominately affect women. Look at Chemical Sensitivity and Electrosensitivity. Both are debilitating illnesses and both are treated like it is simply the person’s own will causing the problems. In fact, they are both severe biological reactions to known toxins but they both have powerful industries lobbying for them to remain psychological maladies despite massive research to the contrary. Tragic how our country has sold its soul to the corporations and traded our health for profits. Disgusting on every level.

  10. The sexism part of the stigma needs to be absolutely front and center. It can’t be blamed on the “trivial” name. That is the result of sexism, itself. And it can’t be blamed on the fact that it is a poorly understood illness – this is also the result of sexism. It is time for writers to make this the single most important story about the illness, and not be apologetic about saying it (i.e., burying the sexism claim inside all the other excuses for why women are being ignored and blamed for being ill).

    The causes consequences of this sexism are consistent with all other manifestations of sexism: dismissal, disbelief, mansplaining, victim blaming, denial, and a shocking erosion of one’s consent as unproven and dangerous treatments are foisted on women. Medical sexism functions exactly as sexual assault and sexual harassment do, to render us powerless. It is very serious, and while you mention autism, a better analogy is MS. Several decades ago, women with MS were similarly disbelieved, deemed hysterical and/or malingering. It is a repeating pattern.

    Women have no credibility with assault or with illness, and this needs to be unapologetically shouted from the rooftops: this is wrong.

    • Lori, I don’t know how long you’ve been impacted, but my intro goes back 30 yrs. At the time AIDS was a very scary epidemic & it received major attention from all sources. It had Hollywood behind it…and so many things. I honestly don’t think it was intentional that we were overlooked in the beginning. Remember, no Internet and, as you say, a lot of people didn’t believe us. That’s important to acknowledge, but I think it’s equally important to praise those who not only knew (like my neurologist), but went out of their way to tell their patients & help them along this difficult path. Many of us were also impacted with other things like major surgeries, unknown illnesses (I have 2 of them, also)…so many things. I spent my “well” time helping with my other illnesses. Back then we did it by phone & had a few hundred (after 15 yrs. or more) members. Due to the Internet, there are now thousands & the word has spread worldwide. Yes, women bore the brunt of this & we certainly could have benefited from all research close to anything resembling our problems. I’ve had plenty of doctors who couldn’t/wouldn’t understand CFS/ME, but I want everyone to understand that some of them were women & I swear that I received the closest scrutiny from them. There are presently two excellent films on CFS/ME (& I’m so tired of the arguing about the name!), one is Jennifer’s ‘UNREST’ but the other is by a young man, and the name is ‘FORGOTTEN PLAGUE.” Both of them should be watched & the word spread about them. I do hope we’ll see a break in this dreadful illness. Even if I do, I still have others that demand plenty of my attention. I wish you better health.

    • Well said, Lori! I believe that if this were not billed as a woman’s disease (if it’s a disease at all, right?), a lot more men would be diagnosed with it. And if a lot more men were diagnosed with it, four things would instantly and magically happen:

      1. It would get a better name and tremendously more respect.

      2. Money would POUR in for research into cause(s) and treatment(s), specialized care facilities, and all other needs of the chronically and severely disabled.

      3. It would be taught with respect and dignity in all medical curricula.

      4. Talk show hosts and “comedians” like Ricky Gervais would stop capitalizing on our pain to make money off our suffering while they lead full, well-monetized lives.

  11. I didn’t even know about this disease, let alone the horrific history of it’s treatment by those we’re supposed to trust. Thank you for bringing all of this to light.

  12. lolly vann says:

    Fabulous and compelling article. I hope every person that reads this article mentions it to someone tomorrow that may not already know about ME/CFS. It will take a grass roots effort to change the narrative away from 30 years of industry neglect and a preponderance of distain.

  13. Nancy Carlson says:

    Just when I began to think there is hope for all patients with ME/CFS I find my health going more down hill. I hope this article will enlighten hundreds more people about this dreaded disease. I find myself hating this disease more and more. Many more articles like this are needed to reach an uninformed public.

  14. Just when I began to think there is hope for all patients with ME/CFS I find my health going more down hill. I hope this article will enlighten hundreds more people about this dreaded disease. I find myself hating this disease more and more.

  15. A huge thank you, Ms., for printing this article and educating the public about the truly awful plight and suffering of millions of people. This illness steals away lives, robs one of almost everything one has ever loved or accomplished, and yet has been ignored or vilified. This needs to change, and articles such as this will help. For more info, readers might like to visit web sites such

  16. Thank you Ms Magazine for publishing this piece. Thank you Julie Rehmeyer for highlighting the prejudice and sexism of ME, and how CDC encourages the barbaric mistreatment of millions.

  17. Thank you for raising awareness of ME/CFS.

  18. Amy Simpson says:

    I’m glad to see this but disappointed it doesn’t include any mention of a new name proposed nearly 3 years ago that actually describes this disease: Systemic Exertion Intolerance Disease, SEID. I first read about it in a Kindred Spirit magazine article (Summer 2015) by Dr. Gary Kaplan, D.O. Unfortunately, I cannot find an archive link on the site to give you, but I expect the author or Ms. magazine can get the full text via email, as I did. Here is the first paragraph:

    ‘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 proposed the name change because of concerns around the current stigma associated with the term “Chronic Fatigue Syndrome,” and because of the subsequent failure by a large segment of the medical community to acknowledge that people suffering with this condition are dealing with a real disease. So, it could be said the goal of the name change was to convince the medical community to look at this disease with fresh, unbiased eyes. “Systemic” acknowledges that this is a disease that affects multiple body systems and “exertion intolerance” names what the IOM is defining as the central feature of the disease. 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.’

  19. I had this disease in the classic period, when it’s known to have first broken out in the US. Needless to say, doctors were of no help (one told me I just needed a vacation). I had no idea what was happening to me, as generally I had always had very good health. Bit by bit I learned how to deal with my own condition, and by reaching out to others with the same, found out more about what might have caused it and what might help. Stress of any kind definitely exacerbates symptoms. My own completely anecdotal theory was that many of us had been overtreated with antibiotics as youngsters or teenagers (in my case, for a case of acne that I could have cared less about, but that worried my father), and that this had compromised our immune systems, leaving us open to whatever virus was causing the chronic fatigue. And when I say ‘chronic fatigue’, I know every real sufferer will know what I mean. We used to joke that if someone said they thought they ‘had it’, you just asked them if they had to sleep on the floor on the way from the bed to the bathroom, and if they looked at you in disbelief, you knew they definitely didn’t have what you did. I was lucky. Self care eventually made the symptoms die down, become manageable, and finally disappear–though I still have to watch becoming overly stressed. I have close friends who were not so lucky, and one, a former nurse, who is now housebound. This is a serious illness, no question. And the lack of competent reporting on it can definitely only be blamed on sexism.

    • Tod– I don’t know whether to laugh or cry!! “Amen” is what I will say for starters. You said:

      “…[ask] them if they had to sleep on the floor on the way from the bed to the bathroom…”

      The first morning I woke up unable to lift my head off the pillow, that began my long acquaintance with this telling drill. My headboard rested against the wall separating bedroom & bath and the bed was placed beside the door, so it was only a few feet from bed to toilet. But it took an hour to make that short trip. Unable to sit much less stand, I could only roll off the bed onto the floor. Rest. Crawl a foot or two. Rest. Crawl a foot or two. Rest. When I finally reached the toilet, it took herculean effort to drag myself off the floor onto the seat. Fortunately it was in the corner, so I could lean against the wall until it was time to begin the taxing return to bed, where it was another monumental task to hoist myself up onto the mattress again. By this time it was necessary to go again. I quickly learned that I was better served just to lie on the bathroom floor and be done with it.

      Try describing that to a non-PWC. Eyes roll or glaze over, depending on how diplomatic the person wants to be. But we’re not really sick. Ask just about anybody.

  20. It is not just women who are disregarded with this. It is men, too. Men are told to buck it up and never ever complain. Men commit suicide 3.5 x more than women, believed to be because they are shamed for being ill. Medical doctors have an arrogance so hefty, it is killing people. I blame the horrible medical doctors who just took the job to have a big paycheck and brag about themselves at a party. They really don’t care. Some do care. If you find them. hold tightly and thank them! But most MDs just don’t care about their patients. We need way more awareness and kindness, even among our ME/CFS community.

  21. Ruaridh Pringle says:

    Really find it hard to see how sexism is behind this tbh. I’ve had this for 30 years, and have experienced exactly the same pattern from GPs and the health system, society etc., as described here, and by female sufferers I’ve heard / read describing it, as have all the male sufferers I’ve known. Just last year, my GP told me it was all in my head (his opening salvo was: ‘of course, it’s just a psychological condition’). I suppose a case could be argued that if more men suffered from it than women, it might be taken more seriously, but male sufferers in my experience are dismissed in the same way as women, and some of the most vocal advocates and researchers (also sufferers) have been men.

  22. thanks Julie. Wish I could say hi to Amberlin

  23. Thank you MS. Magazine for this amazing article on this illness, which I’ve had since I was 12. It is greatly appreciated!

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