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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Need Info on CFS Definitions and History

Discussion in 'Action Alerts and Advocacy' started by charityfundraiser, Jan 4, 2010.

  1. charityfundraiser

    charityfundraiser Senior Member

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  2. shrewsbury

    shrewsbury member

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  3. George

    George Guest

    charityfundraiser

    Sorry it took so long to find this but I think it may be what you are looking for.

    Here is the link http://orwh.od.nih.gov/cfs/aboutcfs.html

    and a few excerpts from the page

    Hope this is what you need.
  4. juniemarie

    juniemarie Senior Member

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    Albuquerque
    Those links were great. Its very difficult to explain to people what this illness is about. I even have family members who do not think I am sick. At times, especially with casual relationships someone I may run into occasionally but dont know well, people who may have heard through the grapevine I am ill, that I have M.S. because I dont want to see them roll their eyes..........kind of like when I was living in Italy and I would get tired of the reaction, or the long political conversations, when I said I was American, that I was Canadian! lol
    Also good point about layman's terms. I am still looking for a simplified but convincing explanation or description also, as I may find myself in a legal situation(not social security related) later this year,where the outcome will completely depend on my having something explaining my poor health. Something that will not be too long and technical that may make the court glaze over fast. Something that would explain the enormous debilitating aspect and the legitimacy of this illness.
  5. George

    George Guest

    Huh

    Have you been diagnosed long?

    If you find anything anywhere that actually makes this a legitimate illness please be sure to let the rest of us in on it. :sofa:
  6. shrewsbury

    shrewsbury member

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    I like the Klimas quote in the nytimes

  7. juniemarie

    juniemarie Senior Member

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    George I have had this for about 14 yrs. I dont know if Ican actually say I was ever diagnosed. Most doc's I have seen either have not believed it is real or they dont want to talk about it cause they cant offer much help. So by default you might say and the list of symptoms. I am not sure how an illness becomes legitimate.........by number of deaths?
  8. juniemarie

    juniemarie Senior Member

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    Islandfinn That is very good and to the point. Now if I can figure out how to print it out I will use it as part of my explanation. Thankyou for posting and if you find others I would enormously appreciate it if you would post them.
  9. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    You could try to describe your "poor health" in terms of functionality. I can only walk so far before getting tired. If I do x, then y happens. I spend x amount of hours in bed each day and can only use my brain for x amount of time before it shuts down. My temperature rises to x following any activity. I cannot sleep through the night even with medication. I cannot get my own groceries or cook for myself as I cannot stand for more than 5 minutes at a time. I feel fluish and run a low grade temperature most of the time. When I engage in any activity outside basic self-care I end up in bed for three days. I have only one hour a day that I can concentrate.

    I'm just making stuff up, but maybe you get the idea? I'm sure we could all help you fine-tune an explanation for you to use.

    You might even find some help looking at the type of questions that Social Security asks. They are less concerned with cause and more about what you actually can do. Can you stand? Can you walk? Can you lift things?
  10. shrewsbury

    shrewsbury member

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    Hi juniemarie. Welcome to the forums.

    here's lots of good info all over the site. Maybe you could start with the Canadian Consensus Documents, the link I've attached is to the overview which is very easy to read.

    Also, my last post had a link (click on the words with the blue print) to the NYTimes. They've had a # of good articles - the Oct 12 I think it was one by Denise OGrady is excellent.
  11. MEG

    MEG Senior Member

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    Asheville, NC
    Juniemarie,

    Try printing out Laura Hillenbrand's New Yorker article. It is very easily understood for layman and just technical enough that it might be helpful. Best of Luck.
  12. juniemarie

    juniemarie Senior Member

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    Good points gracepoint. All of these suggestions are helping me to get my thoughts organized and focused. I always seems like a bucket of worms when I sit down to write up something. There is A LOT riding on this as far as my future well being and safty is concerned. Sometimes it terrifies me, as I have been alone with it,so appreciate all the input. Plus I think I want to also write something for those family members and "friends" that dont quite believe me when I tell them I am sick.

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