Chronic Fatigue Syndrome is “Real,” Institute Of Medicine Declares

The Institute of Medicine has proclaimed that Chronic Fatigue Syndrome is real.

Oh. My. God.

Does this mean that those of us who suffer from it will no longer be branded as malingerers, neurotics, and cranks?

Maybe.

But only if our PCP reads the article.

But wait!  We now have proof.  We have a weapon!

Print out the article and bring it with you to your next visit.  Your PCP either will or will not get defensive.  You may or may not have the ability to change PCPs if they get their back up about it.

But the main thing is not so much about our doctors.  It’s about US.  It’s about the medical arm of the National Institutes of Health, founded in the 1800s by none other than Abraham Lincoln, issuing a position statement declaring that CFS is a real disease, and providing an ICD10 code for it, which not only legitimizes it as a proper diagnosis, but gives providers a billing code and a way to justify medication choices.  If any effective medications are found, that is.

There is one, and only one, diagnostic criterion for CFS: post-exertional exhaustion out of proportion to the exertion.

For instance, if I do ten minutes of gentle yoga, I have to crash out in my recliner for an hour.  Clean the snow off the front steps for fifteen minutes: two hours and counting, in the recliner.

A few years ago, when I started having trouble climbing three flights of stairs after having done so effortlessly for years, my PCP was concerned about my heart and sent me for an ultrasound.  The doctor who read the study sneered: “You’re out of shape, that’s all!  All your ultrasound shows is exercise intolerance.”

I tried to explain that I dragged myself from one end of hilly Jerusalem to the other every day, but instead of getting stronger I was getting more and more exhausted.  He snorted and pointed at the door.  I slunk out, feeling foolish and invalidated.

So rejoice, O Chronically Fatigued!  We are Recognized, we are Real, we are….tired.

 

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30 Comments

  1. Terri

     /  February 18, 2015

    This is SO timely for me. Had it for 21 years now and in bed all day after yoga yesterday…..I’d take plain ole ptsd and the emotional crap rather than have this never ending life ending fatigue. And its so isolating! I lost my life 21 years ago as far as I’m concerned…seems nothing I do, no matter how much rest, right food, no stress….seems like nothing I do can make it better.

    Reply
    • 21 years! Terri, that’s awful! I wish there were some magic formula…ANY formula at all would do…to deliver us from this life-destroying illness. It’s not a new thing, for sure. It was once called Neuresthenia, basically saying “sensitive nervous system.” I would go along with that, if it didn’t have negative connotations of weakness of character. My personal sense is that it has something to do with mitochondrial dysfunction. I think that will be borne out, now that there will be research funding, being a Real Disease and all.

      Reply
  2. so good to know no one has been tired for no good reason!

    Reply
  3. In general, I like to use my doctor as an encyclopedia. I have been misdiagnosed or not diagnosed for many things until I started to figure things out for myself. I have to go in and say, I think I have this. And the Dr. says, yup. probably.

    Reply
    • Ah good, you have a doctor whose ego does not overwhelm her/his judgement, and who knows that you are one smart cookie. I’m having to fire one now whose attitude is “oh YEAH? No, you don’t need that test regardless of the clear photo of a bull’s eye rash on your arm last summer.

      Reply
      • Doh! That’s baaad. Next doctor, please!

        Reply
        • Yah, and you know JUST what that rash is, don’t you? I wonder what percentage of doctors has removed a tick, from a dog even, let alone know that the deer tick that transmits Lyme Disease is practically invisible to the naked eye, so their connection to the outdoors is rather dim…ticks, bacteria, rashes, arthritis…bah humbug.

          Reply
          • I spend lots of time out hiking around. I’ve also spent lots of time removing things that shouldn’t be attached to me! I would know exactly what the rash was if I saw it. On anther note, I’m working on that edible wild food list post for you. I’d better put a disclaimer in it!! Ha!

            Reply
          • PS – It makes me think of this song… http://youtu.be/G–JyVxZmGQ

            Reply
            • HAHAHAHAHAHAHAHA!!!!! The mutual tick-check is certainly one of the most pleasurable post-hiking activities….preferably done in the shower….and you know, it’s hard to wash off all that Rhus Radicans/Toxicodendron oil by one’s self. Just watch out with that Dr. Bronner’s peppermint soap LOL!!!

              Reply
              • I have a Petersen’s Guide to Medicinal Plants (Eastern US) that has lots of good photos and cautions as to possible toxicities and other nuisances such as getting black hands from gathering walnuts. Highly recommended.

                Reply
  4. I most certainly have the post exertion exhaustion that is waaayyyy out of proportion. Have for years. Sweep the kitchen floor….rest for 2 hrs; take a shower…1-3 hours in bed; go grocery shopping…that’s it for the rest of day, I’m in my adjustable bed with medical mattress, surrounded my careful arrangement of various pillow including three body pillows. It’s so exhausting, to say the least (pun intended). Thank you for sharing that we have been recognized officially. It’s a good step. We still must continue to advocate for ourselves…and we will. Blessings, Laura

    Reply
    • Wow, I’m envious of your bed! (Irony font). I bet you pack yourself in pillows to keep yourself from moving in your sleep, which would cause you to wake up in pain. That’s how I sleep, anyway…But the bent knee part of your bed must be helpful in keeping still also. Oh dear. I never could have imagined ending up this way.

      Reply
      • Laura, It’s likely that you could get a bed like mine if you decide to settle someplace after your journey. I got it through our health care supply store with a prescription from my doc. Medicare paid for most of it, if not all (memory, you know). For me, pillows not only keep me from moving too much while sleeping, but they also provide a very gentle pressure all around my body that I have found I cannot sleep without. I do awaken several times in the night due to pain and the need to change positions. That’s part of why the bed is great…I can change positions with the press of a button. And, you’re right…the ability to raise my legs enables me to be able to ‘lay on my back’ (along with raising the head a bit too). My bed is my comfort place…as long as it has the pillows. It’s so ridiculous if we have to be somewhere overnight….I have to pile all my pillows in to take with me 😛 I’m so grateful for them, though. It’s about time to buy some new ones because many of mine are getting too flat and hard. Oh, what I wouldn’t do for a gel adjustable Temperpedic! Hope you are coping with the cold, etc okay. I really feel for you. We have cold and some snow left…a bunch melted today though. I hate winter! Off to create some art! Peace to your heart, Sara

        Reply
        • Hmmm, you know I never thought about it much, but the sensation of compression really makes a difference how I sleep. I am completely surrounded with pillows and heavy blankets (I turn the heat way down at night), and I feel vulnerable without my bundle of wraps. I have a compression duffle bag JUST for pillows 🙂

          Reply
          • I like to sleep in a cool room, too, because of all the pillows and yes, blankets, too. Unfortunately my hubby doesn’t like to sleep in the cold. He’s so good to me, though, and will pile on clothes and blankets so I can have it cool much of the time. Have you found any particularly good pillows? I’ve seen some I’d like to try, but they are way too expensive. I do like a feather pillow for my head. Blessings

            Reply
            • What a good hubby to value your sleep, because he knows how important sleep is and how hard it is to get, sometimes, or all the time…pillows. I would rather have good pillows than almost anything else. Good down pillows are expensive, but they are worth every dime for the comfort they bring, and they last nearly forever. Early Winters is my favorite place to get down, and I think The Down Company might still be around, I don’t know. One thing is, I got seriously bilked on Amazon from some company called “Hotel Pillows” or something similar. I ordered Soft, which I always get because they are moldable, and the ones they sent were labeled Soft but are hard as rocks so I use them for reading bolsters! The Sierra Trading Company deals in seconds and discontinued styles of basically everything, so it’s a good place to hunt for bargains, and I do mean BARGAINS! They are very ethical and I have literally never had a problem with them after at least 20 years of trading with them. You can also put something on a Wish List and they will email you if they get one of those.

              Reply
  5. The last few weeks have been hell, with major bowling balls bein thrown at my head. I’ve had a large share of major walloping emotional issues to deal. But that is about me. It’s my daughter who I’ve always thought I had a good (honest) relationship with that is the biggest bowling ball of all.. In the middle of a major shit storm with my thoughtless family I was raised with I get this call from my daughter that her brother sexually molested her when she was 6. He was 8, and it was so horrible and nasty beyond words she couldn’t tell what he did, although she said she told me over and over as a child and I refused to help her. Naturally I flipped out.

    Now, I find she has a therapist. I googled repressed memories. At first she was trying to get disability because of her arm going numb, that somehow changed to being bipolar and needed to verify it by seeing a therapist. We don’t live in the same state. Before this past year there had been no discussion of this. I believe this resurgance of thess deeply repressed memories are being therapist induced. She said her last 2 husbands supposedly knew everything and since she wouldn’t tell me anything I called them. They were clueless. It made her furious that I called them. Now she’s accusing my husband of molesting her daughter. I also found out that everything she’s ever told me has been a lie. Very big elaborate stories about things you wouldn’t need to lie about except that it got her attention. In the last 2 years (she’s 34) she has announced she has a tumor in her pancreas (that drs now only want to watch), is having seizures, has as swollen painful stomach and has a hernia, and needs surgery but when I say I fly there to help take care of kids it now just needs watching, too. The list goes on. The only difference is that now I told her I don’t believe her. She got vicious. The yelling phone calls calling me every name she could think of. I blocked her number on my phone. I couldn’t take it any more. So she started calling other people who are believing my son and husband are child molesters. You can guess what this had done to them

    I’m just dumping on you. My daughter has problems I never knew she had. I don’t know how to deal with this.The fantastic lies were lifetime and told so well. I don’t know what to do. I don’t know if there is anything I CAN do. This has blown my universe out of the window. I think, how could I have not heard all her cries for help?

    Reply
    • Wow, you are really getting hit hard. Maybe a looooooonnng vacation from your daughter’s dramas would do you a lot of good. I know the guilt that goes with taking a break, and if you speak to her I’m sure she’ll let you know what a bad person you are, etc. But you have to take care of yourself first. Do you have your own therapist?

      Reply
      • Yes, I need a break. I blocked my phone but I didn’t block my email address. i had hoped we could a place to communicate. Boy was I wrong! I’m determine to not read her emails. She twists everything I say, no matter what it is. i have to leave it alone and hope that somehow it will work out. It’s too raw to do anything now.

        Reply
        • Read my latest post. There are some really good resources and links for those of us who need to go No Contact, and inspiration to take care of YOU!

          Reply
          • Thank you – I will. I know that for right now i have to stop all contact with her because it’s just making matters worse. My daughter has disappeared inside herself for now and I can’t find her. I don’t even recognize her.

            Reply
            • I’m so sorry. I hope your daughter feels safe enough to come out, and soon.

              Reply
              • Come out?

                Reply
                • Maybe I didn’t understand. Did you say she had disappeared inside herself? That’s what I meant by “come out.” Of her disappearance.

                  Reply
                  • My daughter has become someone I don’t know. I think she has had problems that I failed to recognize. Once her stories became something I stopped believeing she turned on me, rather viciously, when I tried to get her to tell me the truth about things she said has happened to her in her life that I now see as cries for attention. But now she is hurting other people as well with accusations. I believe it is a therapist she has recently started seeing who now has her “remembering repressed memories” things she says she stuffed down all her life. Things so horrible that happened 30 years ago (my daughter is not quite 35) and to even talk about it will cause her to have a break down. She named names of people who knew about these allegations and no one knows what I’m talking about. i started questioning many things she has told me for years to find out that none of these things ever happened. She now won’t talk to me – or allow me to speak to my grand children – for the rest of my life. Very emotional – because I confronted her with these things. I need to give her and myself some much needed space – and it breaks my heart. Her one year boyfriend I also have good reason to believe is also promoting this and is quite the pathological liar himself. He’s very manipulative.

                    Reply
  6. Praise be, it’s taken them long enough.

    Reply
  7. Yeah, for real. Now to tackle fibromyalgia.

    Reply

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