A Sick Kid With Some Questions; The Scandal Behind Chronic Fatigue Syndrome.

It is midnight and I just finished taking a bath. I experienced a really bad crash a few days ago and spent the last two days in bed waiting it out. I am unsure what caused this most recent crash. I have been taking it very easy here but something zapped. A fuse blew. Bye bye Mary. The bath I just took was the first one I’ve taken in four days. I know that this is disgusting. I am someone who prefers to shower everyday, do my hair and makeup everyday, and wear clothes that are coordinated like the commercials tell me; transitional outfits from day to night! It’s no secret that my frequency of showers has lessened in the last two years. But when the simple act of getting up to blow your nose, or reaching for something that is more than an arm’s length away and you return to your position panting, out of breath, heart racing, body weighed down…it sort of leaves showering out of the question for the time being. It’s impossible to stand that long. This is why when I do muster up the energy to get clean, I take a bath, which requires a lot of energy in itself. But I take a sick person bath. I use a water bottle to pour water over my head so I don’t have to sit in weird positions and once I’m in, I’m in for a good hour. I don’t know why, but I often start to feel like a human being late at night. It’s like the clouds part just for a moment. So while I get that small window, I take a bath and tend to personal hygiene; Brush my teeth as hard as I can, because I don’t know if I will have the energy to do those things tomorrow. If today is any indication, then probably not. Monty sleeps, raising his head every now and then at a noise I make, then goes back to dog dream world.

I know this all sounds pretty grim, and it is. This is the ugly part of being sick. The part that people who know me socially don’t ever see. The part that sometimes, like yesterday, become too heavy for me to bear. Not just physically, but mentally. All of the sudden, it weighs too much. I feel stuck. It’s all piled onto my chest to where even my breathing feels labored. I call my mom and she walks me through it. I let the dark thoughts come and leave. They are just thoughts, fleeting and insignificant. I say “I will not lay down and die today.” And then I write it in my notebook. And then I lay down. But I don’t die. (Spoiler alert!)

I survive. Suddenly, I don’t want to write poetry about being sick. I don’t want to find the wisdom in the pain. I don’t want to ask what the lesson is and find how I am a better person because this situation forced me to dig deeper into consciousness. Which is true, it did. But some nights like tonight, I’m just ready for it be over. In my bedridden state the last few days, I’ve been researching the very bizarre and twisted history of this illness, and it’s surprising to say the least. Tragic and appalling to say the most.

I want to know why the National Institute of Health has continuously allotted such low sums towards the research of CFS.  For 2012 it has allocated $6 million, ranking it 220 out of 232 diseases. You can find it at the bottom of the list underneath Psoriasis ($10 million) and Hay Fever ($7 million). To give some context, similar illnesses like MS were given $121 million and Lupus, $105 million, but have less prevalence and a similar level of disability. As a result, countless studies and research efforts in the way of CFS have been put on hold or simply terminated citing funding issues.

It takes money honey.

I want to know why the Center for Disease Control has repeatedly ignored, overlooked, and downplayed this illness for a quarter-century–An illness that the head of the CFS branch himself said left patients as functionally impaired as someone with AIDS or Breast Cancer. The agency not only minimized it’s detriment by calling the thing “Chronic Fatigue Syndrome” (they might as well have called it Lazy Ass Tired Folk Disease) it’s now been documented that the CDC routinely diverted money intended for CFS research to other projects. This is all documented in the book Osler’s Web and this article by David Tuller from November of 2011. A 1999 report from The Department of Health and Human Services found that between 1995 and 1998, at least $8 million was charged to the CFS tab but rerouted to other projects and another $4 million could not be accounted for.

I want to know why the most promising research of CFS is being funded and executed by private institutions and donors, like the Whittemore Peterson Institute or at academic institutions like Columbia and the University of Miami…no where near the CDC, the NIH, or its constituents.

This isn’t just about me or just about other sick people with this illness.  Contested illnesses like this cost the US billions of dollars annually in lost productivity and depletes healthcare resources. Less than 1/5 of patients with CFS work full-time, and more than half receive disability benefits. The estimated cost of lost productivity from CFS annually is $18 billion. Just over two years ago I worked full time, spent my money, paid my taxes and I was happy to do it. Now I am unable to work and unable to receive or afford health insurance. My doctor has suggested I apply for disability. I am 28. I do not want to continue taking 25 pills a day.  I do not want to live off disability. I would actually like to go to work and be a contributing asset to the country. But I know that in order for these things to happen, the dialogue has to change. There are actually people and doctors out there who don’t believe in this illness, as though it were fucking Big Foot.

I know that getting mad and pointing fingers won’t really help me out tonight. I have accepted my life with this illness. I will be OK whether things change or not. I have found ways to be happy given my circumstances and some days are harder than others. I guess you’re catching me on a hard day. I have a family who supports me and was lucky to find a doctor that is a leading researcher of this illness, although her clinic at this point is barely staying afloat. But not everyone has what I do. I have received so many emails from people whose doctors and/or families have dismissed them, not believed them, or just written them off as depressed. This has to change.

I don’t know what the next step is, I just felt the need to get this stuff out in my little corner of the internet. Maybe the right set of eyes will befall on this one day and some real change can take place. Maybe nothing will happen, in which case, nothing was really lost. I’ll be in bed either way. The thing is, I am not a little kid writing to Santa Clause–This is change that is actually possible. I think there are far more important matters in the world than CFS/ME research and I look forward to the day when this is no longer my cause. I know this country can do better, and I have not ever lost hope that with the right people and minds at work, this is something we can fix, even if it’s after I’m gone.

Health, Happiness, Change.

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22 thoughts on “A Sick Kid With Some Questions; The Scandal Behind Chronic Fatigue Syndrome.

  1. When I was diagnosed with fibro at Mayo, they explained to me it’s not classified as a disease because it doesn’t progress or kill you. For some, fibro and CFS may cause other complications which may lead to some progression of symptoms, but for the most part there is no end stage to fibro. They also have no clue what causes these syndromes which reminds me of how little we know about our brains. I feel if more resources were put into understanding the human brain, we would find answers to so many questions about so many things!
    You may find this encouraging, however small it may be, After visiting the Fibromyalgia and Chronic Fatigue Syndrome Clinic at Mayo in Rochester, MN a few years ago, I have received at least ten requests, to participate in different research projects. I always ignore those requests, but after hearing how comparatively few resources are being used to research a condition in which I myself suffer from, next time I’m going to respond to those requests!

  2. Mary-
    Great post- but hard to write, I’m sure…. sometimes we are just simply overwhelmed by our chronic illnesses- we know that it will be ok, but sometimes you just gotta feel all the frustration and unfairness!

    I have a friend struggling to be diagnosed with immune system stuff- I’m pretty sure it’s CFS- but as you know, a whole party platter of other auto- immune usually comes with your main dish. I too, have immune stuff- mine is the result of a bone marrow transplant.. no cancer- yay! Chronic immune system problems- boo. My party platter includes CFS, Fibro, Lupus- like stuff, etc. The other night (nights are always harder, yes?) I was just done with my legs swelling and hurting, my fibro stabbing me in the back, and my sinuses trying to emancipate from the rest of my face…. ( got it in most of my soft tissue areas) and just let myself be pissed off and whiny and cry a little.

    As for the research- it’s total bullshit that these problems are not being addressed as major issues with so many people suffering these issues, not to mention the effect it has on workplace costs, insurance billing, etc. You would think that alone would give people pause, but no.
    And congrats on the Lazy Ass Tired Folk Disease… perfect.
    Virtual hugs from afar-
    Amanda

  3. I know that nothing I can say will make you feel better, because let’s face it – fibro and CFS suck. But I just wanted to to briefly comment and tell you that I feel for you, I’m reading, and my poor hubby suffers from these things as well… and the ONLY thing he has ever found after years of a gazillion treatments/research/doctors/etc is Sunrider. He takes herbs from that company – all natural, fantastic stuff. Perfectly doctor approved and safe. They are pretty expensive, at least the way he takes them, but he is able to work Mon-Fri and attributes it purely to the Sunrider products. (You can google them – or type in Sunrider.com.) I tell him about your blog sometimes, and tonight I mentioned that you are in a bad spell, having a rough time, and how sorry I was to read it… and he said that I should tell you about Sunrider…because he says that if he hadn’t found it, he’d be just like that, lying in bed all day, hardly able to bathe or move. I know people must tell you a ton of things on regular basis, so I’m not swearing this will help you or that it’s a miracle cure, but maybe it will be as much of a benefit to you as it has been to my husband… and it certainly can’t hurt, right? Sending positive thoughts your way.

  4. I have a suggestion for your next step…why not start a petition on change.org? I am sure your followers (such as myself) would sign and share. And I will be sure to post this on fb.

  5. Hey Everyone, It’s Mary’s Stupid Friend Jess. I had my scientist friend Shelly find a link for all the current CFS research funded by the NIH:

    http://report.nih.gov/categorical_spending_project_listing.aspx?FY=2011&ARRA=N&DCat=Chronic+Fatigue+Syndrome+%28ME%2FCFS%29

    She says that hopefully when awareness for CFS increases so will the allocation of funds towards research. Blogs like this one can make a difference. Simply re-posting this blog to your Facebook or Twitter can certainly spread the word. Word.

  6. Lazy Ass Tired Folk Disease!!! Yes! God. You’ve gotta laugh or you’ll cry, right?

    Blogs can make things change. :) I’m working on it, you’re working on it, we’ve just got to keep working.

  7. Here’s an idea, in your last blog post you indicated that you had a lot of free time. Well, maybe we can all take a cue from [several] scenes in Shawshank Redemption: (I know it’s kind of long, but relevant)
    ANDY Maybe it can do more than that. How about expanding the library?
    Get some new books in there.
    HEYWOOD How you ‘spect to do that, “Mr. Dufresne-if-you-please?”
    ANDY Ask the warden for funds.
    LAUGHTER all around. Andy blinks at them.
    BROOKS Son, I’ve had six wardens through
    here during my tenure, and I have learned one great immutable truth
    of the universe: ain’t one of ‘em been born whose asshole don’t
    pucker up tight as a snare drum when you ask for funds.
    WARDEN: Not a dime. My budget’s stretched thin as it is.
    ANDY: I see. Perhaps I could write to the State Senate and request funds
    directly from them.
    WARDEN:Far as them Republican boys in Augusta are concerned, there’s only
    three ways to spend the taxpayer’s
    hard-earned when it come to prisons.
    More walls. More bars. More guards.
    ANDY Still, I’d like to try, with your permission. I’ll send a letter a
    week. They can’t ignore me forever.
    WARDEN They sure can, but you write your letters if it makes you happy. I’ll
    even mail ‘em for you, how’s that?
    RED (V.O.) So Andy started writing a letter a week, just like he said. And just like Norton said, Andy got no answers. But still he kept on. A year went by, And still he kept sending those letters…
    Dozens of parcel boxes litter the floor. WILEY, the duty
    guard, picks through them. Hadley enters, trailed by Andy.
    ANDY What is all this?
    HADLEY You tell me, fuck-stick! They’re addressed to you, every damn one!
    Wiley thrusts an envelope at Andy. Andy just stares at it.
    WILEY Well, take it.
    Andy takes the envelope, pulls out a letter, reads:
    ANDY Dear Mr. Dufresne. In response to your repeated inquiries, the State
    Senate has allocated the enclosed funds for your library project… ”
    (stunned, examines check) This is two hundred dollars.
    Wiley grins. Hadley glares at him. The grin vanishes.
    ANDY In addition, the Library District has generously responded with a
    charitable donation of used books and sundries. We trust this will fill your needs. We now consider the matter closed. Please stop sending us letters. Yours truly, the State Comptroller’s Office.
    Andy gazes around at the boxes. The riches of the world lay at his feet. His eyes mist with emotion at the sight.
    HADLEY I want all this cleared out before the warden gets back, I shit you not.
    Hadley exits. Andy touches the boxes like a love-struck man touching a beautiful woman. Wiley grins.
    WILEY Good for you, Andy.
    ANDY Only took six years. From now on, I send two letters a week instead of one.-+

    Maybe it is time to be asking these questions that you have in a persistent, somewhat annoying, sort of way! If anyone can do this in an eloquent and straight-forward manner, it would be you. Especially important will be the amount of money that is spent on people who WANT to work, but are unable to due to the mis-allocated/applied funds! Hey, it would at least be a project that not only takes time, but also is for a good cause that would benefit all that read your blog religiously, and are inspired by you every week! You give me a lot of smiles and hope, I have faith in your abilities!

  8. I spent about fifteen years going to numerous doctors for pain in my face that you could not see. Finally, the last referral to another doctor, with me sobbing when the doctor was referring me, got me on the right path to the right doctors with the right tests. I have a diagnosis, and treatment, and have proof that it is real. Of course, I already knew it was, but I cried when I got the MRI results anyway. I understand what you say, and I am sure there is hope. Just keep plowing, there are many plowing along side of you, and you will get there. I am sure. God Bless you.

  9. Urgh, previous comment did not post~ so just wanted to say, thanks for another post that hits the nail on the head. Especially regarding people who feel free to “not believe” in someone else’s illness… I have begun reading “Figuring Out Fibromyalgia”, 2011, by Ginevra Liptan~ if you haven’t read it already, it has a very interesting description of the role of fascia in fibro muscle pain. Thanks again!

  10. Hi Mary–thanks for this. If I’ve learned anything in the last eleven years, it’s that strong people stay strong and ALIVE by showing their asses from time to time and letting other people help and love them through it. I applaud your bravery for saying, “Really? Again? What if I don’t WANT another fucking opportunity for growth? What if I just want to acknowledge, however briefly, that this blows goats? There, I said it.”

    So thanks for lighting a candle in the darkness… with your butt.

  11. While you are researching things that make you want to cry, check out the link between chronic fatigue syndrome/ gulf war syndrome and environmental toxins here http://www.doewatch.com/gws/. I have fibro, and I just have to wonder if there is something equivalent to a Roman aqueduct (Rome’s aqueducts were made of lead, causing many sicknesses) causing or that did cause my symptoms either to reverse the fibro or to educate others so that they can avoid a painful future. I would not wish this disease on my worst enemies. I hope you feel better soon, and know that you are not the only one who has not bathed in days ( I think I am going on day 4, and I am grossing myself out)! Thank you for sharing!

  12. I agree…the NIH kinda sucks in their funding. My son has Autism, and is debilitated by it physically, not just mentally. Funding for Autism research HAS greatly increased (due to the disorder GREATLY increasing, now 1 in 88 kids will get diagnosed, my son is 6 and so isn’t even counted in that stat) but the vast majority of the funding is purely genetic, after 10 years, billions of dollars and suprisingly little proof of it being a purely genetic disorder, it is still like that. Environmental and physical research is mainly funded by private orgainisations and parents (grassroots stuff).
    So while I haven’t experienced what you are going through, I do know how hard it is to be a parent of a child who’s medical needs are constantly ignored or refused treatment/investigation due to his Autism diagnosis. We live in Australia, so there is little funding for Autism at all.
    My heart goes out to you, and know that your story counts, just like my story, my son’s story, all these stories where profit and self-interests motivate research and funding that could and does change lives. Educating people, letting them know how this is for you, is so important, and it is the only way these things will change, and research dollars will go to where it’s really needed to change lives for the better.
    Those hard day/nights ARE hard, but know you are not alone. x
    I love your blog by the way :) been reading it for awhile.

  13. *hugs* I’m sorry that you are struggling at the moment and I hope it passes soon.

    I agree with you that more needs to be done to work out how we can treat conditions like CFS, and many other overlooked problems. At the very least to get to the stage where people don’t have to use up their little energy fighting for recognition and acceptance of the fact that they do infact have a medical problem

  14. Mary, your words echo in my head as if they were my own. Screaming into a dead and stagnant air…wishing that anyone, everyone, could hear, could feel as enraged, as passionate, as hurt and angry, and as hopeful as we do. I feel in my heart of hearts that our time will come, that this will finally get the notice that it deserves, but I know not when that time will be. I do hope that we see it in our lifetimes. I am 30–only two years difference between us. You remind me of times I have been pleading everything you have said and more. I have lost friends as I’m sure most of us have, due to this undeserving, misunderstood, illness and the others that tend to stack with it. All the tears we’ve cried and all the anger we’ve felt…the physical and mental anguish we work so hard to downplay, could destroy this continent, much less the doctors, family, and friends who do not believe in it. Because we are able to survive through this, proves that we are stronger people than anyone (including ourselves) would ever give us credit for. I know as well as you do how hard it is to remember that…but I am with you, and even though I don’t know you, I am you–as you are me. Keep the fight alive Mary, and keep making a difference to those of us that are fortunate enough to read your words. We empathize your words & your pain. YOU make a difference to me. Thank you.

  15. I’ve been reading your blog for a while now but have never commented. We could literally be twins. I’m 28 too, and also had to give up my awesome job because of my rare disease (trigeminal neuralgia in my case). Every time I read one of your posts, I feel like it could have been written by me! I tried to start my own blog but def didn’t have your gift. Would love to email with you directly :)

  16. I totally agree!! I’ve felt down about being ill lately. Been meeting new people and I’ve worried what they’ll think when the time comes to explain my fibro and how it has affected my life.

  17. This is just a really small point, and you’ve made some great arguments here and I agree that there should be a lot more research, but just to point out, psoriasis and allergies can also be debilitating.

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