My Diseased Brain

Chronic Fatigue Syndrome has been renamed Systemic Exertion Intolerance Disease and proclaimed real by the Institute of Medicine.

And in other news the Ents have decided that Hobbits are not Orcs. All joking aside I think its fantastic that Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease is now being taken seriously. Someone also pointed out that SEID is DIES backwards which will never not be hilarious.

I know many people didn’t like the name Chronic Fatigue Syndrome as it never properly reflected all the symptoms. I have never really minded that much. I’ve found that tiredness is the root cause of most of my symptoms in one way or another. And I’m really not going to tell anyone about some of the stranger symptoms (like throwing up because of the heat). I don’t want to get all Shakespearean but its just a name. It doesn’t change what I have.

I think the most exciting thing about all this is doctors are doing more research into CFS/ME and changing the way it is diagnosed. I know many doctors use CFS as a “we don’t know whats wrong with you so we’re just going to call it CFS” thing. I think I was really lucky in that sense as I only had two blood tests both to check my iron levels before my doctor suggested that I might have CFS.

Though it is still annoying as while there are many clinics in England specialising in CFS/ME there are only three in Scotland. The only person I can talk to about CFS is my GP and even he admits that he doesn’t know everything and in some situations there isn’t anything he can do to help.

For now I’m just going to continue the way I always have and find some way of making a joke about my diseased brain. Actually I feel that all these diseased brains and sleeping problems could be a fantastic premise for a zombie story. Does someone want to get on that?

Thanks for reading.
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48 thoughts on “My Diseased Brain

  1. M.E always made sense, But CFS and M.E do have slight differences. I am so glad they’re finally taking cfs and M.E more seriously, and i suppose changing the name helps remove the stigma from CFS a bit.

    • I’ve spoken to some people who seemed to think ME and CFS were the same thing. From the way my doctor explained it they have slight differences. Kinda like fibromyalgia.

      I suppose I haven’t really noticed any stigma around CFS because I’ve been too busy at home being unwell. But it is great to see that scientists are working on learning more.

      • From what i know M.E has more to do with inflammation in the brain. or somthing like that, my aunt explained it to me once but it all feels awful in the end right?

        I’ve found the worst Stigma for me has come from consultants. i’m just glad my family is supportive i read about so many who are just getting told to get over it. If only it was that easy.

        but yes, it’s great to see the illness get some proper research, hopefully they’ll find something that really helps soon.

        • They way my doctor explained it was it had something to do with a brain infection. It sort of makes sense. I know some people who got M.E. from an infection have a really weak immune system.

          I have to say most of the doctors I’ve seen have been really fantastic. Its my family that don’t really understand what CFS is. Most of them seem to think CFS is the sort of thing you get over in a few months.

    • I know that some people are ill but can’t be diagnosed because CFS isn’t real. They can’t work because they are unwell but can’t get disability benefits because the thing they have isn’t real.

      Very annoying. Though I understand how its difficult to diagnose something when there are no ways to test for it. Apparently that has changed now, scientists have found something on brain scans of people with CFS.

  2. Although I’m so happy they finally acknowledge that it’s real and now some in depth research will be done, it’s irritating that a group that aren’t even specialists in it decided on the name. Now people keep commenting to me about the exertional part and I’m having to explain that I’m exhausted without even doing anything, so now they argue about that. *sigh* There’s no winning in any sense with CFS or FMS.

  3. i’m a physical therapy student and we study different medical conditions such as CFS. it really frustrates me that most of the diseases we study have an unknown etiology 😦
    i’m happy to hear that more research is done about this condition. keep up the positive vibes! 🙂

  4. You mentioned blood-tests to check your iron-levels. May I ask what your iron level was before you were diagnosed? I’m interested as I’m often sleepy as hell, tumbling around in a rather drowsy state (no drugs, no alcohol) and considering they refuse my blood at the donor’s due to low iron (last time the lady literally told me: there are other ways to help people). As I understood mine was not so very low (as in not anaemic), but not high enough to donate blood. So I’m wondering what your iron level were/are? And if there’s connection between low iron and tiredness.
    Although, in one of your other recent posts you also mentioned that you get tired physically, whereas I’m feeling best (like alive) when I walk about 10km in fresh air.. so that’s different.

    Also, kudos for the ents deciding hobbits are not orcs 😀 This made me giggle.
    And I would hope you yourself would maybe develop the zombie-story, you’ve got great writing skills, nice sense of humour, so I think a story written by you would be enjoyable to read (just don’t make it YA-lovetriangle! 😉 )

    • The two blood tests that I got came back normal. Or at least normal enough that I didn’t need to take iron supplements. It was possible that I had needed a blood transfusion during surgery and didn’t get one. I think the same thing happened to my aunt.

      The blood tests from before the surgery all came back normal. I’m not sure exactly what the results were. The not cancer bit was the thing I was most interested in.

      But yeah low iron levels can cause tiredness. You can buy iron supplements in most shops. I have a guy friend that takes special “lady” iron supplements because he is a vegetarian.

      I would love to be able to do a 10k walk. But I can’t do it 😦 I used to be able to.

      I am going to write a zombie story that has the best damm love triangle that all YA authors will be jealous. Thanks 🙂

  5. I am glad that to have a sign that CFS is being taken more seriously, but I have to admit it the new name causes me another problem: remembering it through my brain fog!

  6. Someone I love has M.E on top of a pain disorder caused by genetics and it’s a bloody uphill struggle to convince anyone that is not a medical professional that he isn’t living an incapacitated life for the sake of it, or because he lost his ambition. The trouble we get is from the non medical professionals who need endless certificates, reports, forms, and who don’t have the training to assess those things from a medical point of view. It makes life difficult and stressful. I have a mental health problem, which is invisible and nebulous but for his M.E and my crazy, both manifest in very obvious ways. The angering thing is having to ‘prove’ it over and over. Gah.

    You write about it very well. The zombie plot is begging to be written.I think a Choose Your Own Brain Fog adventure might be intriguing but then on a day that is lacking in spoons, most of our adventures end quickly in migraines and mood stabilisers. Eh, such is life. am sorry that you have had such an uphill to get what you need to.

  7. Love this post! It’s so true.. Nothing more frustrating than people saying “CFS isn’t even real”!!! X

  8. Tripped over this from the “related posts” area, so forgive the inadvertent resurrection of an old post, but the naming discussion is just… ugh.

    As someone who’s had problems for most of his life, I’ve watched them name, rename, go back to the first name, tweak the name, extend the name, change it again and keep fiddling with what to call some of the things that’re wrong with me. And I can’t help but think “Guys; if you spent half as much time actually trying to fix it as you do deciding what to call it this year, do you think we’d actually get something done? I know, crazy, right?”

    Of course, I’m one of those silly people who thinks acronyms and making sure they spell things (even backwards, and yes, I chuckled at the DIES/SEID) are typically a waste of time and resources when compared to results.

    • Yeah, I’ve got to the point where I just ignore all the different names. It gets a bit ridiculous to be honest. People can call it whatever they want but I know what I have and what I call it.

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