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Life Expectancy and CFS/ME

Discussion in 'General Symptoms' started by dean, Jun 7, 2010.

  1. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    Great ideas!
     
  2. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    Me too! ....
     
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  3. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    Mithriel, just another great post by you- precious wisdom!
     
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  4. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    This sounds like a great idea. Wouldn't yield info for a long time, but very cost-effective and something we could start now. I would be a 'subject' but I don't know much about science, so I couldn't evaluate the idea rigorously and get it started. What do the science-literate people think about this idea? Any of you willing to coordinate such a study? Maybe Prof. Jason would be interested.
     
  5. ukxmrv

    ukxmrv Senior Member

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    I don't worry about death and don't find it a hard topic to talk about.

    I'm more worried about spending the rest of my life with this disease and then at the end, having any shortening being dismissed or trivialised.

    Luckily, I am in contact with other ME patients and my husband has instructions from me on what to do if I die suddenly.

    I've lost so many ME friends and all died before statistically they should have. I owe it to their memory to make sure that their deaths are not forgotten and that the fact that they suffered from ME and died before their time ignored.

    The UK ME charities are in the process of evaluating/setting up a tissue bank. There are also other projects ongoing. What use they will be to use is another matter if not handled correctly.
     
  6. Tulip

    Tulip Guest

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    I have almost been hit by a car 3 times in the last few months, all 3 cars stopped right in front of me because I just did not see them, even though I looked several times. I now avoid crossing busy roads :rolleyes:

    I am worried about death, but that is because I have a young child to raise on my own and I need to stick around long enough to see him grow up and leave the nest. I think I will go back to sticking my head in the clouds and pretending everything is peachy keen though, as it has been playing on my mind waay too much lately, especially the heart stuff involved in ME and it doesn't help at all. I function much better in "peachy keen mode".
     
  7. ukxmrv

    ukxmrv Senior Member

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    Fair enough Tulip,

    Sending a hug to you in peachy keen mode.

    We all need to find a way to live with this disease. What works for one may not necessarily work for another.

    Good idea to bring up the accidents and busy roads!
     
  8. Tulip

    Tulip Guest

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    Ukxmrv thanks :Retro smile:

    It is good though that we can all talk about death on here if and when needed without being censored :thumbsup:
     
  9. MEG

    MEG Senior Member

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    Dying from CFS???? I think so

    Hi
    I just found this thread, and I wish I had found it sooner. I AM afraid of dying soon. My sister died at 49 from CFS, but her death certificate says, cardiomathy, multisystem failure. (Not CFS, so it will not be counted) I am 58, on oxygen, have heart, lung, kidney failure. My mother on the other hand, whom we are sure had CFS, lived to be 73. But she wasn't as ill as my sister and I until 2-3 years prior to her death.

    In the beginning (2001) of my life with CFS, I thought it didn't effect mortality. Now we know differently. And it isn't easy...I am in bed, in pain, nauseous, no appetite anymore,(45 pound weight loss) a perpetual headache, and on oxygen to breathe, and I am most afraid of dying of congestive heart failure...suffocating. I feel like it must feel to have HIV-AIDS.

    Sorry to be so depressing, but I am having a terrible night tonite. Usually I can put on a good face, but not tonite.

    I am alone and scared....
     
  10. Merry

    Merry Senior Member

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    MEG -

    I'm very sorry to hear that you are suffering from so many serious health problems.

    Thinking of you,
    Merry
     
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  11. ukxmrv

    ukxmrv Senior Member

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    Sorry to Meg, to hear of the terrible pain you are in. Not surprised that you are scared. Anyone would be in the circumstances.

    You are not alone. There is a CFS and ME community. We will listen to you.

    I know that it is not the same as someone to hold your hand and say that it is all OK. But we are here and you are important. Keep talking and keep posting please.
     
  12. maryb

    maryb iherb code TAK122

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    MEG there are so many kind generous people on here to support you, most of us have been where you are and we truly understand how you feel, some days it just feels too heavy, but I'm hoping today is a better day for you, stay strong and like ukxmrv says keep talking and posting.
     
  13. madietodd

    madietodd Senior Member

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    MEG. was anybody on chat last night? I'm sorry that you're struggling with so much, and if you feel alone it's that much harder. I get on chat almost evey day, and often we're just silly and joking. But whenever anybody needs to really talk, we're there for each other. I'm never on in the middle of the night, though....

    Hugs to you,

    Madie
     
  14. Sing

    Sing Senior Member

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    Dear MEG,

    I am so sorry that you are suffering every day like this! I didn't know it has been this hard, this bad, for you, and that your relatives also were sick with ME/CFS and went downhill the way you described. I think it is right for us to hear, because I believe the majority on this forum are younger than me or you, and may not have or want to have a sense of how ME/CFS relates to mortality.

    Our culture denies death, though we are obsessed with it too in our appetite for violence as entertainment and as a way to render "justice". People are living longer and longer, now, it seems, 85 and up, but now half of those are disintegrating with Alzheimer's. By comparison, at the beginning of the 20th century, most women at least, did not live even to the age of menopause. The long lives of today's standards may just be a temporary fluke in history.

    However long you or I or anyone here lives, I hope we can help each other improve our lives' quality, by sharing, helping and caring.

    Keep on sharing!

    Sing
     
  15. justy

    justy Senior Member

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    Hi Meg, thinking of you this morning from my side of the world. I am so sorry for your pain and the losses in your family. Sending hugs ((( )))

    Justy xx
     
  16. taniaaust1

    taniaaust1

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    Hi MEG ***sending hugs***
     
  17. mtnbibliophile

    mtnbibliophile

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    A belated reply to some of the earlier posters who did not see the point of this thread:

    It is not just reduced NK cell activity that leads to earlier deaths among people with CFS/ME. That wouldn't account for the fact that those of us who die from heart disease do so an average of about 20 years earlier than the general population. Two other risk factors that I am aware of:
    Orthostatic hypotension, which many of us have, has been shown to lead to an increased rate of mortality:
    Orthostatic Hypotension Predicts All-cause Mortality and Coronary Events in Middle-aged Individuals (The Malm Preventive Project)
    Artur Fedorowski; Lars Stavenow; Bo Hedblad; Gran Berglund; Peter M. Nilsson; Olle Melander. Posted: 03/19/2010; European Heart Journal. 2010;31(1):12-14. 2010 Oxford University Press (sorry, couldn't find the url).
    Our risk of suicide is clearly higher than that of the general population.

    Why does it matter whether we will die younger than others? Well, as I told people after I was diagnosed with terminal leukemia, I no longer have to worry about not having enough money to live on in my old age: I won't have one.

    More seriously, if we can show that people with CFS/ME have a statistically significant risk of dying younger, it might finally get the medical profession and the public and the funding agencies to start taking our disease more seriously.

    The CDC estimates that 14,300+ people with a diagnosis of AIDS died in the US during 2011 - not necessarily from AIDS, but from any cause at all. That's out of an estimated 1.2 million people who are HIV+. HIV/AIDS gets over 3 BILLION dollars a year in research funding from NIH; we get $5 million. Dr. Nancy Klimas, who has treated both HIV+ and CFS/ME patients, has said she'd rather get a diagnosis of HIV than CFS/ME because if you stick to your treatment regimen, HIV can be treated. We can't. Again, that's $3 BILLION in research funds for HIV/AIDS to a paltry $5 million for us, and we're just as sick -in fact sicker than most people who are just HIV+. I'd like to see some of that research money redirected to us, and establishing that we are in fact at greater risk of early death might help.
     
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  18. Sing

    Sing Senior Member

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    You bet!

    Hypotension part:

    I'm at the upper end of my 60's with bad hypotension and living alone. Walking is sometimes not possible. Other times it is such a strain I feel my heart and chest are under severe pressure. Then there is usually a time I can take a walk of a quarter or half a mile, which I do. The heart attack feeling is there already, and I expect it is bad for my brain to have so little oxygen then. My vision is dimming, coordination going and I can't think--while undergoing such a struggle to be on my feet. I try to avoid this, naturally, but sometimes I just have to stay up regardless.

    Low immune system:

    With IgG at 500 something out of 700 and IgM and IgA, one borderline and the other subnormal, being prone to infections, it will be no surprise when my ship goes down sooner than expected. This is excepting those who get malignant cancers, as some of my friends have and you do too, then the end comes up even sooner. I am sorry!

    With ME alone, I don't expect a life span of normal length, and with this quality of life, would not frankly even want it to be. I expect I will go of a cardiac event or an infection. Or else I will fall or have an accident. The tendency to go into shock is much raised and there is far less resilience, when one is struggling so.

    Like you, I hope that mortality and morbidity in ME/SEID is studied and documented, and that the results will bring on more funding and action.
     
    Last edited: Mar 1, 2015
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