ME/CFS and Sexism  

For those who have watched Jen Brea’s Ted Talk, or read other accounts of life with MECFS, like Julie Rehmeyer’s new book, Through the Shadowlands and my essay in Quartz a few months ago, then you know that medical neglect is a big part of the disease’s narrative. 

Also within this narrative is an underlying theme of sexism. There’s no doubt that sexism, both consciously and unconsciously, is real as it pertains to people with MECFS (myalgic encephalomyelitis / chronic fatigue syndrome) and the medical professionals who treat us. In fact it seems the topic has been coming up more and more lately so I thought I would chime in. 

Chronic fatigue syndrome is an incredibly patronizing name, there’s no denying that. And some feel that one reason it was given that name is because there has been a misconception that the disease only afflicts middle-aged, middle-class women. Some doctors still feel that a bunch of middle-aged women are faking their illnesses. But the truth is, every demographic is either directly or indirectly affected by this disease. Yet the misconceptions persist and there are a number of reasons. 

Beyond the name CFS and the unavoidable ignorance of society (of which I took part in until I got sick at 22) is how the broader medical establishment operates when faced with uncertainty. 

But also, there is a long history of sexism in the medical realm in general (read my Quartz piece if you want specific examples) with terms like “conversion disorder” and “refrigerator mothers” being freely thrown around. This broader type of sexism is a big reason why some people with MECFS feel that much of society still doesn’t consider it a serious illness. 

But here’s where I take issue when the MECFS narrative turns to sexism…

One woman recently commented on an article I wrote about my regression from bodybuilder to bedbound — an essay that had little, if anything, to do with gender. I posted the article on Facebook and the woman started by saying “I think that some people will take this disease more seriously purely because you are male…” 

As disheartening as it is, some people probably will take this disease more seriously merely because I am a man. But excuse me, those people are fucking idiots, and as far as I’m concerned, their opinion doesn’t matter. 

Okay, now that I got that out of the way, let me tell you why I take issue with this woman’s comment. She failed to acknowledge the ignorance, neglect, and condescension that I’ve dealt with, as a man, while trying to heal myself at the hands of incompetent medical professionals and while working to legitimize this disease through my writing and advocacy. The truth is: I’ve had just as many doctors and laypeople try to delegitimize my illness as any woman I know with MECFS. 

Do I think I’ve been victim to prejudice in the same way many women with MECFS have? No, not in the same way. I have, however, had my own issues with medical professionals; I’ve had doctors look at me — a young man and former bodybuilder — and say “You’re not sick, you’re healthier than I am. Do you get seasonal depression? I want you to try an antidepressant.” 

Even the so-called open-minded doctors have pushed “happy pills” on me. The doctor who first diagnosed me with MECFS even wrote me a prescription for antidepressants. Her rationale was: “I can’t make you better, but if you need a check-up you can always come see me. In the meantime, try an antidepressant to keep your spirits up.” At least she was honest. Rarely does a doctor say she/he can’t help me, even when it’s the truth. 

I should probably stop harping on doctors, but when I’ve heard one ask my mom, as I was too sick to speak or eat, “What does he do all day? Watch TV?” I just can’t help but be jaded. Yeah Doc, it’s Seinfeld reruns all day — a regular pleasure cruise over here.

And it isn’t just medical professionals. I have had people — good friends — ask: “Do think you just sleep all the time because you’re bored?” Ahem. Right, that must be why I couldn’t speak or eat solid food for a year and a half, too. 

So while I think it’s entirely justified for women who have MECFS to voice their experiences of medical neglect at the hands of sexist doctors, I have a problem when those experiences discredit, however unconsciously, the struggles I have had with the same illness.

Similarly, a few months ago I posted an essay about what chronic illness has done to my masculinity. I got a lot of good comments from both women and men, but a specific comment from one lady really stood out:

I did not hesitate to reply:

What I left out of my reply, however, was that the article I wrote focused less on qualities and more on experiences specific to being a man, like the pressure society puts on us to be strong and healthy and to even be the breadwinner — an idea still limping along from a bygone era. I did mention some qualities that can be looked at as gender-neutral, but they were in the context of my masculinity, which obviously does not relate to both genders. My experiences with MECFS have impacted my life as a man, and I’m sorry but there’s no way to make that gender-neutral, unless you want to negate the male perspective.  

So whether this woman thought I was being counterproductive to a less gender-divided society, or she thought that I was leaving women out of my description of the disease, I don’t know, but certainly neither were my intention. And regardless I think her criticism was misdirected. 

As she mentioned, the vast majority of people with the disease (upwards of 70% by some estimates) are women, so if anything, exposing the disease from a male’s perspective should be a good thing, right?

While I vehemently share in the contempt that many people have toward the medical establishment being neglectful of, or sexist to, women with MECFS, I think it’s important that we not make our interactions within the MECFS community a battle of the sexes. We’re all on the same side, after all, fighting for a cause that has been neglected and abused for decades. We all have our medical horror stories, regardless of whether it’s from a woman’s perspective or a man’s. And I don’t know about you, but I want to hear from both sides. And by “sides” I mean, as I did in my Facebook comment above, each gender’s perspective, not two sides pitted against each other. 

For those who are on the outside of this disease looking in, please do the same — go buy Julie’s book, read my essays, watch Jen’s Ted Talk, and read Roger King’s book, Love and Fatigue in America, about his battle with the disease. I promise, if you do, you’ll not only see commonalities, you’ll see what this disease is doing to good people. 

Thanks for reading! If you agree or disagree with anything I have written in this post I welcome your comments below, but please keep it respectful. 

32 thoughts on “ME/CFS and Sexism  

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  1. So very saddened to hear that even you are misjudged and neglected. I expected that a very young man who is so clearly committed to good health would get a better hearing than someone supposedly more “typical” like me (female, middle-aged, white). Women *are* subjected to certain humiliations that men are not. In my case, it was a neurologist who implied that my problem involved a certain bad boyfriend experience more than 30 years ago and offered a primary diagnosis of “anxiety hyperventilation.” At the time, I thought I might have done better with him had I been a dude. But, it seems not? Perhaps a sloppy, hurried doctor is equally sloppy and hurried with every case that can’t be neatly validated with biomarkers they can see and understand. Thanks for for sharing your experience and important insights!

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  2. Wow! As a male with MECFS I found the above fascinating reading.

    Sometimes I feel the battle to be heard and taken seriously, particularly if you are a woman with the disease, can overshadow the fact that we all have our own stories to tell.

    I myself have never been told by doctors that I definitely have MECFS, but I have been told that there’s nothing wrong with me, that I’ve just got a virus, that there’s no apparent reason why I have dramatically lost weight and all muscle tone and yes, we all can acquire nervous tics and a stutter when we are under stress.

    Most doctors quickly landed on a diagnosis of depression, my response being “well, you’d be depressed if you had all these symptoms “.

    Even the good doctors were reluctant to give an explicit diagnosis without some sort of clear indicator or test to which they could refer.

    The failure to find the underlying marker or cause of this illness combined with the widespread ignorance of many in the medical profession and the wider community denies us all the legitimacy of having our symptoms taken seriously. As a result, all sufferers carry the additional burden of being considered to be hypochondriacs who just need to “harden the f**** up”.

    The condescending response of medical practitioners saying “yes, I get very tired too” when you are trying to describe your debilitating fatigue is both dismissive and undermining, regardless of your gender.

    It is only when you discover the stories and symptoms of other MECFS sufferers mirror your own that you realise it’s not all in your head and a path of hope exists through our sharing our experiences as we battle our way through each day.

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    1. Hi Ade. I think many doctors don’t know how to diagnose the disease and I can understand why. I just hope we get a diagnostic test soon. I mean, wow that would make a difference. Probably a big one, right? It’s hard to imagine. I know so many people who have had to self-diagnose. It’s so hard to be both doctor and patient in that regard. Thanks for reading!

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  3. I love reading your articles, especially since they address the similarities and differences between what women and men go through. In fact, I believe you have been the only voice for men that has come forward for men since I became ill in 2004 (that I noticed)! I’ve learned so much from you, and apologize for not really thinking about a man’s life with this disease. It’s not men vs women, it’s about compassion and not judging each other with the same disease. I hope you keep writing from your point of view, and fuck everything else.

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    1. Thanks Melissa! I appreciate that so much. Especially the “fuck everything else” part. It’s been a really tough week so that sentiment is definitely in order. Thank you for reading and encouraging me. I’ll keep at it!

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  4. There is argument to say that the figures for me/cfs are female dominant because more women seek medical help than men. With male suicide rates being as high as they are, I tend to agree.

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  5. wish I could read better so I wouldn’t have to skip through the comments (for a well written blóg I put in some effort ;)) so someone prolly already mentioned that men get more Parkinson and women MS, no biggie unless something is not testable

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  6. Like everyone, I can only speak to my own experience with this illness. I do think being a woman made it more difficult for me to find a doctor who believed me when I claimed to be sick — the focus was always on my anxiety in the doctor’s office rather than what I was telling them was happening to my body; I’ve heard of many women who have had a similar experience, but not so many men. Maybe men just don’t talk about it.

    Rather than being taken seriously when I said exercise I used to love was now making me sick, I had to make myself much sicker than I ever thought possible just to prove I wasn’t a hypochondriac or depressed. It was incredible (and not in the good way) to have a doctor go from telling me I just needed to exercise more to putting me on bed rest and panicking about my possibly having multiple sclerosis. Over a year and a half later, I’m still recovering from “doctor’s orders.”

    Whether men are more easily believed, or whether they have that same experience of having to hurt themselves to prove their illness and are just less open about it — I really don’t know. And maybe that’s a key to the puzzle; men are still expected to be tough, and this disease makes us all anything but.

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    1. I’m so sorry you had to go through that. MECFS is the only disease I can think of that requires people to make themselves sicker just to prove the disease is legitimate. I don’t know if you ever had to do an VO2 Max test but it’s just so ridiculous that that’s how we have to prove we’re sick.

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  7. Those of us (mainly women?) wanting to discuss this issue aren’t trying to set up a battle of the sexes. Gender bias affects everyone. Everyone! It is not something that happens from men to women. Women do it to women. Women do it towards men.

    It is a set of societal attitudes we absorb all our lives. Even when you’re aware of it, it is very hard to counteract. Calling someone “such a girl!” is an insult. Usually it is not a negative to show masculine traits.

    The femininity of ME is more seen as the disease as a whole, I think. You are not immune from this by having a Y chromosome.

    See recent discussion on MUS and gender bias on Phoenix Rising: http://forums.phoenixrising.me/index.php?threads/gender-bias-mus-epistemic-injustice-the-evidence.51677/
    “characteristics perceived as feminine are de facto less valuable and meaningful; and that diseases that occur more often in women are mysterious, meant to be endured, not cured, and symptoms are an over-reaction on the part of the patient. Patriarchy says that characteristics of femininity are distasteful — for sure in women, but all the moreso in men. Women steeped in their culture fall for this just as much as men.”

    Although on an individual level women with ME might find we’re treated as less reliable witnesses of our symptoms than men in an appointment, the general health sexism also affects men with ME. It is almost like you are tainted by association with an illness culturally linked with women’s hysteria. It undermines masculine identity.

    Of course this is socially constructed. ME has nothing biologically to do with wandering wombs. Although women do get it more than men, there isn’t any good reason to view men with ME as any less masculine. But we need to know about these biases to counteract them. One tactic might be to harness feminist well allies with the information. Another might be to provide more male case studies to the press and bring out masculine traits/interests in interviews.

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    1. Hi there. I agree that most of us don’t want a battle of the sexes. But I think it feels the opposite from a few select cases. So I’m grateful for people like you wanting to focus on what really matters — finding a cure.

      And I appreciate your encouragement to have the male voice heard in the press. I’m certainly trying to do my part, and it’s generally well received but still disheartening when I get criticized for speaking about masculinity. But I guess that is bound to happen regardless.

      Thanks for your thoughts!

      Liked by 1 person

  8. Is ME/CFS a neglected illness because it is primarily a female one?

    It’s an interesting question, and an idea that I have heard expressed a number of times before. The idea is that neglect of the condition is down to the fact that mainly women have it. I am not sure I buy this.

    By that logic, breast cancer should also be a neglected, forgotten condition; even more so in fact, as it is almost exclusively a female illness. As far as I can see, this is not the case, there are billions of dollars invested in breast cancer research, and new treatments are being tried out all the time – I know this from my own family. In fact, breast cancer is much more high profile and much better understood than a condition like prostate cancer, for example, that only affects men.

    Talking about health in general, if we look at life expectancy, who lives longer? In the US, women live until they are 81.3 years old, on average. The male life expectancy is 76.3. This could be seen as evidence of a certain neglect of men’s health in general. If the figures were reversed, it would absolutely be taken as proof of the health system’s lack of concern with women’s health. As it stands, this is never really mentioned in a discussion of the sexism of health care.

    I think the poor treatment of people with ME/CFS is more down to the fact that there are no diagnostic markers for the condition. Doctors like having something definite and incontrovertible to go on; they want facts, figures, test results and stats. And when these are not available, this allows them to patronize patients who have the symptoms that we experience, as if they are all imaginary.

    Besides, there is a certain assumption when people make the argument that women are discriminated against in the area of ME/CFS that all doctors are men. This is of course not the case. Here in Ireland, at least, more and more doctors are women, and the majority of medical students are now female. We are just as likely to be patronized and treated badly by female doctors as by male.

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    1. Wow! You kind of just blew my mind. So many good points. I agree that the reason many people don’t take mecfs seriously is much bigger than gender discrimination. For one, most people don’t know anything about the disease let along the demographics it impacts. That said, I think the name is biggest reason and gender discrimination may have had something to do with it’s coining.

      Breast cancer is an interesting example. The only difference is it kills many more people than MECFS, but I think your broader point is spot on. Women do live longer and than must stand for something.

      And another excellent point about female doctors. From my experience I have noticed any difference between female and male doctors in terms of compassion for MECFS.

      Thanks for sharing those great points. Let me know if you ever want to do a guest post.

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    2. I think you make good points there The Chronic Situation (I agree that our main issue now is lack of a diagnostic test) but I don’t agree with some of what you say. Any cancer case is a poor comparison to ME, as these people die fairly quickly once diagnosed if they are not treated, so it is obvious there is something physically wrong with them, even in times past. We don’t die in large numbers, and not quickly normally, so there is not fear in the general population of getting our disease. Women organised, collected money for breast cancer research, etc and managed to push things forward for this condition which is why this condition is now well known and there are things like screening programmes (there are problems with screening programmes which is another story). I think the issue of sexism being part of the picture of what caused ME/CFS not to be taken seriously is sort of like a background noise, and only part of the picture, which may have been been more important in the early days to get this illness discredited as hysteria. Now that the position (that this is a psychiatric disease) has largely taken hold in some areas they don’t need to bang on in a sexist way so much as before (though the definitons for MUPS are written in a way that will bias the diagnosis towards women, so this issue might be raising its head again). Sexism doesn’t explain all the problems we have had, it is just part of the picture and I think doesn’t necessarily affect women more than men in that it was used to discredit the condition which we all suffer from. I’m a bit too sleepy to write properly but hopefully you get my gist. I must to back to the thread on Phoenix Rising for the debate, but I think there people were getting the wrong end of the stick. It is more about the overall issue and not dependent on whether a specific male doctor or male/female patient have a specific experience, though these stories are interesting and can give useful examples of widespread problems if there are a lot of similar stories. Post-mondernism I think may have overtaken sexism as the ideology most a threat to us. People can have very wacky ideas with this way of thinking, such as thinking that there is no such thing really as objective reality, everything is about what you feel/think about something and not about what it objectively is…So your illness is not important it is how to respond to it, and you could work if you really wanted to. It is late here so I should stop now but hope this makes sense.

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  9. I read recently, although where and the exact content escape me now, that the body reacts differently to male vs female with CFS, which is why they believe less males come down with CFS. It was in a recent study. That being said, I cannot begin to imagine how it must feel to be a male with CFS. You cannot just buck up and ignore it as men are often conditioned to try to do. I personally don’t see it as an us vs them illness. It sucks for everyone across the board. We’ve almost all been belittled, spoken down to, given ledicrous medical advice and doubted the very core of who we are. I was once told I was malnourished because my B12 is low and same Dr said I just need ed to go out for drinks more with friends… Ummm yeah where’d you say you went to school? I’ll close by saying I think far and wide we are going to be known in history as one of the biggest misdiagnosed, misunderstood illnesses of our time. And I’m so proud of all of us for fighting the fight every single day. (Major flare day so thoughts are jumbled but just had to chime in.)

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    1. Hi Mishka. Yes, I forget exactly what study that was but it did show the disease impaired female and male bodies differently. If I remember correctly it was in how we metabolize macros like fats and carbs for energy. I wonder if this is why some people do well on a keto diet and other do not.

      You mentioned low B12. Have you been tested for the MTHFR gene mutation?

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      1. My apologies, I just saw you replied. I have been tested for MTHFR, and it shows mutations but I’ve been unable to understand (cognitive issues) what that actually means for me. I do take sublingual methyl b-12, which keeps the b-12 in normal ranges. Regarding the diet, I was pretty much paleo when I got ill and held steady weight up until year two of the illness and then my body changed somehow…I have no idea how but now I’m fighting not to put on weight with the same exact diet. Wondering if this illness changes how your body functions (metabolizes) over time. Actually I had read it has stages and I think mine changed. Feeling like this is a me, me, me reply😬 My apologies for the long winded answer.

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  10. I love your posts, they come from your heart, they are informative and bring forth understanding of a human medical condition. Too many people try to stereotype conditions into groups relevant to themselves rather than seeing the illness as a whole.

    Keep writing and spreading the word Jamison, your doing a fantastic job 😉

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  11. I forgot to mention that the use of antidepressants is good for some things, they should not be doled out like candy when they don’t want to take time to solve the real problem.

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    1. True. I know people who have been helped by antidepressants, but it seems to me, and I could be wrong here, that the people who benefit most from them are those whose main issue is depression. Our main issue is a multi-system, metabolic disease, which is probably why they don’t usually work for us.

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      1. I just want to clarify: I think some people dealing with chronic illness need SSRIs and I won’t speak to why — everyone is different and has his or her own battle to face. Personally, I don’t take them because my body can’t handle them and even if it could I wouldn’t want to deal with the side effects, but that is only my experience. If someone asks my opinion that’s what I’ll say. So don’t let my opinion sway you unless you want it to.

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  12. Great post, J. I think your perspective is correct and I’m glad you’re writing about this disease so more people can be informed. There are many doctors out there that just go by the “norm” and do not really listen to their patients. I’ve seen it many times.

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  13. Back in 2007, I had to get a physical to join a teaching program called TFA. Because I just randomly made an appointment with a doctor who happened to be part of a diabetes and thyroid specialist practice, they automatically tested me for thyroid issues as well as diabetes. I was not someone that most doctors would test for thyroid problems. At the time, I seemed pretty healthy. But, lo and behold, the test results came back with a hypothyroid diagnosis–which made perfect sense to me since I had struggled with fatigue and weight since childhood. At the time of my diagnosis, I had very few symptoms except the extreme fatigue–but then I was an insanely busy person–so I just attributed it to that.

    The whole thing started a really long, brutal, dehumanizing dance with Western medicine for me that continues till now. They immediately gave me a one size fits all pill and told me I was fixed. I was given zero instruction on how to take it or the idea that I’d need to get my levels checked and that “normal” was not an easy thing to define. I think, because I wasn’t the typical, middle-aged, overweight patient, they didn’t think it was a big issue for me. This pill made me moody, and I felt crazy all the time on it. I did a ton of research and realized there were other treatments that my doctor refused to provide, and that there were levels of normal for the disease. It was not one size fits all, and most doctors–specialists, even–had zero clue or really gave a shit about it.

    I eventually opted out of treatment and decided I would fix myself with diet and exercise. And that sorta worked for a while because I actually know a lot about medicine from my studies. Until I had emergency gallbladder surgery and almost died. I later found out that my condition played a huge factor in it, and that my levels were 7x normal. So, I returned to Western medicine after several years away and got treatment–the same treatment–but this time with real instructions and close monitoring. I’ve, mostly, been on that treatment since, but I face a daily battle with fatigue–mostly because they never really have addressed why my condition requires more and more medicine to feel normal. And since I’m still in “normal range,” my new doctor thinks I’m fine. When I know, um–no. My meds need adjusting, thanks.

    Women represent a huge part of the patient population for hypothyroid folks, and within this community, it’s this desperate hunt for doctors who actually treat symptoms and not test results. Or who even know that levothyroxine does dick shit most of the time. We also have this stigma attached that we’re just lazy and blahblahblah. This is made even worse because one of the big symptoms with this disease is a difficulty losing weight. A lot of my fellow sufferers are overweight, and no matter how much they exercise or eat right, the weight will not come off. There’s a ton of stigma and controversy about that–and it basically sucks. So, for us, we get a lot of the bullshit that goes with gender and body shame.

    But as shitty as this is–I think it’s worse for men with the disease. My roommate is one of them, and though never formally diagnosed (mostly because doctors have literally rolled their eyes when he said he thought he had it)–he refuses to even deal with doctors–opting instead to take huge doses of supplements and eat Paleo. Sometimes, it works, but it mostly doesn’t. For him, as a man, there’s the BS from the medical establishment–but also more BS from fellow sufferers and the general public who can’t fathom a man could even have it. Worse–traditional treatment isn’t as effective with men–so basically you have to fix yourself.

    Gender bias is definitely a thing. It’s horrible because certain conditions are favored in terms of funding and research and just general acceptance. I think what you’re experiencing–to some degree–is a lack of empathy and…yes…reverse sexism and general sexism too. It may be true that you’re feeling some of the oppression of women, but you’re also getting the backdoor of oppression–what it does to all humans–plus the backdoor effect…if that makes sense.

    I was recently pondering death and noting how I’ve coped with it throughout the years–and I noticed something about human behavior that I think applies here. When my father died, it took me a really long time to deal with it because I was a child and wasn’t given tools to really heal. So, in my 20s, I felt like I was this expert on pain and grief and that no one could understand or get it. I was very selfish in that way and had very little empathy for anyone who had similar pain or anyone who loved me who tried to get it. It was a shadow effect. I think every struggle comes with a path to purpose and meaning that connects you to others, but there’s also this path of the shadow–that serves to disconnect and shame. I’ve seen it in myself and others–and it’s a very tough thing to overcome when you’re trying to be understood and to understand.

    When my Mama died, I remember bawling on the bus on my way home from the hospital–studying the faces of every person–and I realized that everyone had their something. That while my story was important, so was everyone else’s. And we all had different narratives about grief and suffering–that we could all heal from and learn from. No one voice was more important or better. We all deserved to be heard, and each story had the power to transform someone somewhere.

    I think, sometimes, when we’re sick and frustrated and fighting a huge battle over our lives–it’s easy to feel like our struggle is the ONLY struggle or that we’re the experts on the narrative. That no one knows pain more than our in-group does and that people who are different can’t fathom it. When the reality is that we need all the voices to understand it and heal the BS.

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  14. I don’t find you or your writing sexist. And, for goodness’ sake, I’m old enough to know. I was the ONLY woman in my cohort for the PhD in grad school (Nuclear Engineering/plasma physics). In the 1970s.

    I prefer not to have an illness that is associated only with women – it’s much easier to discount symptoms that way. I don’t want you – or anyone else – ill to legitimize MY illness, but it certainly puts a stop to certain kinds of nonsense if guys get CFS, too.

    Whatever the cause and fix, they will probably apply to all genders when discovered, like HIV and AIDS. I can’t wait for that day – and for ALL of us to get better. Meanwhile, infighting (and dissing each other for not being ‘better’ in some sense) is silly. I’m getting some of that because I write fiction, and it seems most other people are involved in SERIOUS concerns, but I can take that, and when all is said and done, fiction will probably survive better. Go fiction!

    Don’t let the well-intentioned but ? get you down.

    Liked by 1 person

  15. You said it all well. As a man with ME/CFS, it is a different world. It is a minority group in a way. I can sometimes feel more isolated than the women, who seem to have special relationships and communication abilities among themselves.

    As someone who *looked* big and strong and healthy, with normal blood tests, I was sent to the “take an antidepressant” folks as well… as if a prozac deficiency was causing me to not be able to walk after having been a highly motivated endurance athlete.

    Men are often told to “man up” and “push through”, as if their innate toughness should carry them through. Maybe one of the reasons there are fewer men diagnosed is the stigma involved.

    Liked by 1 person

    1. Hey Chris, thanks! I’ve talked with other men who have mecfs and they share similar feelings. I think one reason the issues we as men face are so stark is because we’re not used to having such problems or being in a situation where our masculinity comes into question and there’s little if anything we can do about it. We are vulnerable.

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  16. Interesting blog, thank you. Personally, I think the difference between your experience and myself, as a woman with ME is power. You have experienced how it feels to be oppressed, by doctors for example, as a person with a disability. Because our society remains inherently unbalanced in respect to power between men and women, disabled women are oppressed in both respects. Unfortunately (!) there are no prizes for the ‘most oppressed’ and both of our experiences have left us feeling powerless at times and angry. Inequality and silencing must be challenged on all fronts.

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    1. Hi there. I agree that women with MECFS are doubly powerless in some ways. But I’m just talking about the medical realm not society in general. The latter is a discussion in which I have no rooom to complain. Thanks for reading and sharing your thoughts!

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