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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – A Life Sentence of Barely Living | ChroniCarly

I am very fortunate to have met my friend Amy several years ago. We attended the same high school at the same time for a few years, but never knew each other until we were adults. When we were first introduced, she had not begun her illness journey and I was not quite comfortable with full disclosure of my health details. Over the years, she has asked me questions and we have commiserated over becoming increasingly familiar with the Spoon Theory. In the past few months, Amy has become an incredible health resource for me, providing expert advice on ME/CFS and Fibromyalgia as well as the kind encouragement I needed to jump into the pool of illness discovery again after a long 20 years of becoming accustomed to my original diagnosis of Crohn’s disease.

Amy is a beautiful person inside and out – calm, loving, intelligent, with a big heart, but still enjoys peppering her speech with a good curse word. I do not know much about ME/CFS, but I know enough to guess that writing this took a lot of mental and physical effort on her part. This post originally appeared on her private Facebook page, but I obtained permission to re-post here because I believe it is so valuable for spreading awareness of this invisible illness. Amy has asked to be credited by first name only for privacy reasons.

Jen in bed (© Canary in a Coal Mine)

Movie still: Jen in bed (© Canary in a Coal Mine)


I have struggled for well over a year trying to write something explaining that I have ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and what that means. Although I see evidence of it more and more in the media, I’m keeping an eye out for it. It’s not very widely known, and it’s certainly not well understood by the general public. So, if you would take a few minutes to read this, I would be immensely grateful. (Sorry I find it difficult to be more concise.) And please feel free to ask me any questions.

I am among the patients who think the name Chronic Fatigue Syndrome minimizes the illness and just how drastically it affects patients. It’s like calling jaundice ‘chronic yellow syndrome’—fatigue is just one of many symptoms indicative of serious dysfunction at play. In fact, ME/CFS affects all vital bodily systems and causes an inability to maintain bodily homeostasis. While it is primarily neurological, it also involves cognitive, cardiovascular, immunological, endocrine, metabolic, respiratory, hormonal, gastrointestinal and musculoskeletal dysfunctions and damage. It’s not just fatigue: there’s also joint and muscle pain, muscle weakness, sleep disturbance, cognitive dysfunction, the inability to remain upright without exacerbating symptoms, muscles seizing up and giving out, etc. etc.

Even the word fatigue can be misleading to someone who doesn’t experience this every day. The best way I can think to describe it is to say it’s like having the flu or mono ALL of the time. I feel the absence of energy all the way down at the cellular level. And no amount of sleep alleviates it; I don’t remember what it feels like to wake up rested. On my worst days, it keeps me in bed, in a mental fog and unable to sleep due to the pain and often a “wired” feeling, unable to tolerate light and sound. On my best days, I might be able to leave the house for a few hours, but I can only do so once or twice a week without repercussions. And even then, I sometimes crash. The thing is, I don’t look sick, so please remember that if you see me out and about, it’s only because I’m feeling well ENOUGH, not that I am all better. I’m fortunate in that I’m still able to walk on most days and usually can get around on my own.

I was actually diagnosed in 2011 (after being sick since 2007), but it took me a while to accept it. Who wants to have an illness with no known cause and no known cure? One whose research is woefully underfunded? Something that many doctors imply is all in our heads due to their lack of understanding? That most people haven’t heard of and frequently dismiss when we explain it to them? When, in actuality, moderate to severe patients such as myself have a quality of life that has been compared to AIDS patients in their last two months of life. The level of disability with ME/CFS is on par with multiple sclerosis, congestive heart failure, lupus, rheumatoid arthritis, and other serious diseases. I’m currently unable to work, though I have to remain optimistic that may change at some point in the future.

One of the driving forces at play is that my cells have lost the ability to effectively use oxygen to create energy. I’ve had testing done that shows my ability to utilize oxygen is just slightly better than someone who qualifies for a heart transplant. The problem is a new heart wouldn’t fix this. Now, cells can still produce energy without oxygen, but the output is drastically less, about 94% less. So, you could say my body is largely operating at about 6% of normal. And this is how I can actually overspend my energy and create an energy debt that results in a “crash” that may last anywhere from days to weeks, months or years if the exertion was prolonged. This is why I cannot tolerate exercise and why it’s actually dangerous for me to do too much. The catch-22 is that, up to an ever-changing limit, I can push to get something done, like taking a shower, running an errand, or talking with a friend. But there is always a price, and I can never be sure how long a recovery it’s going to cost me. Also, mental overexertion has the same effect as physical overexertion. For me, mental overexertion can be as little as reading for more than 15 minutes at a time. Or trying to write something like this (another reason for not doing so sooner).

The prognosis is not great in that there’s no cure. Most patients experience patterns of remission and relapse, though few if any ever fully recover. Though it can kill people with severe cases of it, ME/CFS is largely a life sentence of barely living. And yet, by being forced to slow down, I’ve learned to appreciate and find gratitude in the smallest of things. Speaking of, if you’ve read this far, you are truly awesome! Thank you. And I would be remiss if I didn’t mention that I don’t know where I’d be if not for my amazingly supportive husband. He and my wonderful friends and family give joy and meaning to my life. I’m very fortunate and am grateful every day.

I worry that I don’t do a good job of describing life with ME/CFS because I’m immersed in it and take for granted what people don’t know about it. If there’s anything you’re curious about, please ask. Also, I was recently diagnosed with fibromyalgia in addition to ME/CFS, and the illnesses quite commonly coexist in the same patient. I know this complicates things, but as of yet, I haven’t been able to research fibromyalgia, so ME/CFS remains my area of “expertise.”

Please consider watching this trailer for a documentary that’s currently being made about ME/CFS. The impetus for my finally writing this is that I’m very excited about the awareness this film can achieve.


Here is a link to the Kickstarter for Canary in a Coal Mine

You can read more about the documentary from this ABC News story.

9 Responses to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – A Life Sentence of Barely Living

  1. Thanks for sharing Amy’s story. I have a friend who struggles with ME, though I hadn’t realised the potential severity. This certainly paints a deeper picture than I think he is comfortable sharing. Thanks again, and kudos to Amy for putting it out there.

  2. Heidi says:

    Very clear precise explanation of a condition that is not easily understood. Better explanation than any doctor could have said. Thank you Amy & Carly for taking the time & ENERGY to educate & teach us what a person with ME/CFS is going through.

  3. Sara says:

    Thanks so much for sharing, I have had this disease for eight years. I have many friends who are doctors and still don’t believe this illness exists! I find myself not sharing with others because of the lack of education about the illness, so far for me it is just easier to not explain! I believe we will eventually come to an understanding and level of acceptance that will prompt research. Until then I will remain silently hopefull that acknowledgement, understanding and a cure are on the horizon.

  4. Carly says:

    Sara, thank you for reading and taking the time to comment. It makes me so sad to think that it is so common for people to not be believed – even by doctors and friends. Hopefully people will wake up to the seriousness of ME/CFS and a cure will be found soon.

  5. Amy says:

    Thank you all so much for taking the time to read and comment. I appreciate your feedback.

    Sara, the fear of not being believed contributed to my delay in sharing my diagnosis for several years. I’m sorry you also struggle with this. I also have to hold onto hope that we’ll gain the acceptance and understanding of the medical community and the general public eventually, hopefully in our lifetimes.

  6. Like having the flu all the time…on a good day! I was dx’d with fibromyalgia back in 1986 and here’s my description: http://bit.ly/w4M8Yu and know you’ll identify with it. As you so clearly articulate in your post, not being taken seriously/truthfully because we look well only adds to the pain. Time for my nap!

    • Carly says:

      Thanks for pointing out your post. I have not been the most aggressive about learning what will work best for my Fibro, but I think I am ready to start. I know there are many more options out there that I could at least look into.

  7. a says:

    Greetings! Very helpful advice in this particular article!
    It’s the little changes that produce the largest changes. Thanks
    for sharing!

  8. carol says:

    Thank you for explaining so well. My greatest problem still remains that no one really bothers to research and understand. God bless you
    II