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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Life Expectancy and CFS/ME

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

  1. glenp

    glenp "and this too shall pass"

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    I do take the extra salt -- so hard to remember. I think licorice root is not good for something (I forget now) so have not taken it.

    We fit in woth the ole fogies just a lil ahead of our time!!!
    glen
     
  2. Mark

    Mark Acting CEO

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    That's an excellent summary of what you achieved in our post parvofighter, and you did so with extraordinary sensitivity. I've faced the same dilemma myself on another thread recently and it is a very tricky one to navigate: you did a quite brilliant job.

    I don't always find time to praise and say thank you to posters like parvofighter who make such a great contribution. But this was so skilfully executed I felt I couldn't not do so - perhaps because I was wanting to make the same points myself but didn't have time, nor the depth of resources to back it up.

    So please multiply this thank you by about 100 times over parv, to apply to the rest of your posts, you have posted some really great stuff lately and I'm really glad you continue to do so.
     
  3. Sing

    Sing Senior Member

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    What Mark said.

    Thank you, parvofighter!

    Sing
     
  4. glenp

    glenp "and this too shall pass"

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    Ty 2

    I thank all of you too

    glen
     
  5. Rrrr

    Rrrr Senior Member

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    it is a big Thank You-fest!!

    and, honestly, i think this type of supportive and appreciative community is what will help keep us alive longer.

    best,
    rrrr
     
  6. Victoria

    Victoria Senior Member

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    Well, at 56 1/2, I am past 55 too.

    I don't fear aging or death, but I would hate to end up a vegetable from a stroke (or car accident).

    Besides, I can't die yet, I'm enjoying life too much at the moment.

    I'm determined to do a lot more things in my life, so while I have these plans (for now), I haven't got room in my life for death or cancer.

    (And there is so much early death from heart attack, stroke & cancer in my family, I've told myself, I'm going to be the person who DOESN'T follow the family history).

    And I think that unless they've studied thousands of ME/CFS/FM sufferers & their deaths, one can't worry too much about statistics.
     
  7. Tammie

    Tammie Senior Member

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    "But aside from a diagnosis of chronic fatigue syndrome and a prescription for antidepressants, no doctor could find anything wrong with her." Reminded me of the well known comment, "Aside from that, how was the play, Mrs. Licoln?"
     
  8. Victoria

    Victoria Senior Member

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    Tammie,

    that sounds like one of so many examples of "what they can't see, they don't believe".

    I reckon we should have slings, plaster casts & crutches for all outings (assuming you can walk & go out to the shops and are not already in a wheelchair).

    They should be a specific colour to indicate an invisible chronic illness.

    I DO remember being glad to have a sling when I fractured my collarbone, & crutches and slippers when I had ankle surgery & couldn't walk or wear normal shoes.

    (I'm a bit embarrassed to admit that I enjoyed the sympathy from work colleagues on those 2 occasions).
     
  9. Tammie

    Tammie Senior Member

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    Victoria, you are exactly rt re seeing/believing.......would love to see someone try to get away with the same statement substituting the word AIDS (or cancer, MS, etc) for CFS, though - ugh!

    I can understand enjoying the sympathy a bit, too.....after all fractures and surgery are not fun, so why not get something little out of them?....at this point I have had so many injuries, surgeries, and other things (heat stroke, etc) I can't say that I would want something visible like crutches, etc to show that I am sick, (although if I could trade those injuries for CFS, I would do it in a heartbeat)........ but the color idea I could certainly go for! (& if there were a different color for ea illness, I would be a rainbow)
     
  10. Mithriel

    Mithriel Senior Member

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    The MEA(?) are trying to set up a post mortem tissue bank in the UK.

    Mithriel
     
  11. Min

    Min Senior Member

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    Aren't AfME involved in this too? If so, it will be a 'mild psychological fatigue' tissue bank and not an M.E. one.
     
  12. Sing

    Sing Senior Member

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    It would be helpful to have a good study to assess "morbidity and mortality" with ME/CFS to attract future research funding. What I mean is this: The research money in this world goes to the things which are known to kill people not to those which "merely" make people suffer--no matter how much. So in whatever way it can be shown that ME/CFS is LIFE THREATENING, so much the better in terms of funding.

    Sing
     
  13. klutzo

    klutzo Senior Member

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    My understanding was that Dr. Byron Hyde's study did involve thousands of his patients over his entire career, but he only followed them for 25 yrs. before publishing his results, so you can't state an average age for death, since some were still alive after 25 yrs., although it was under 10%. I don't know that much about the other study mentioned here. I think he found an average age at death of 47, but as I said, how can you know, when almost 10% are still alive. They could live to be 90!

    I do remember the list of cancers we are at especially high risk for, even though I saw this list over a decade ago,so it may no longer be accurate. It differs for Fibro and CFS only in the first one on the list.
    1. Thyroid (only if you have fibro too)
    2. non-Hodgkins Lymphoma
    3. Myoglioblastoma (this is the rare brain tumor talked about in one post above)
    4. Burkett's Lymphoma
    5. Salivary gland cancer (I had one member with this in the support group I ran).

    I started developing pancreatic failure over a decade ago, and was diagnosed with severe exocrine pancreatic failure in 2007. I started developing heart failure in 2008 and now am swollen and painful below the knees by noon every day. My swollen feet hurt so much I waddle, unless I wear compression stockings all the time. It was easy in winter, but darn hot now. I am allergic to diuretics. The drug for pancreatic failure costs $900 per month, and if the company rep had not decided to give me all his free samples every month, I would not be well enough to be on this computer anymore. I take COQ10 for heart failure, the better absorbed ubiquinol form, but can't afford the recommended dose.

    It is not as scary as I once feared. The symptoms of these two conditions, when under some control, are much less of a problem than the symptoms of the CFS that got me to this point. I think Sing is right that morbidity is more troubling than mortality, at least to me. I am 59, but turn those numbers around and you have a more accurate idea of how I feel, more like 95. Who wants to live forever feeling like that? Quality is more important than quantity to me.

    I've been sick for 24 1/2 yrs. and am more than ready to go home to God. I am just hoping for a massive stroke, and with my labile blood pressure, I have a good chance. I don't want to be bedridden, because I am too much of a coward to do that, and it would bankrupt my husband.

    I think those of you who have something or someone to live for will live longer. Just my opinion. I have good cyber-friends with this who say they hang on for their kids and grandkids. I don't have that reason. We have no kids and I have no family except my husband, who cannot ever retire because of me. I am hoping he finds a woman after I'm gone whose husband died and left her a bundle so he can take it easy. He deserves it.

    I also think there is a good chance of better treatment on the horizon now, so there is much reason for hope, esp. for the younger ones.

    There is a huge range of illness levels with this as well. I know someone with CFS who can only handle 2 days of work per week, but runs for exercise! I can't work at all, but I can do an hour of mild exercise, 3 X weekly.

    Then there are genes. My mother did not have CFS, but died at age 60, and she lived longer than all of her 3 siblings, so I don't come from a long lived family, but many of you probably do. We are all different, and are not statistics, but people.

    klutzo
     
  14. ixchelkali

    ixchelkali Senior Member

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    I agree. When I realized there was a possibility that ME/CFS could be caused by a pathogen, I changed my advance directive to NOT be an organ donor; I wouldn't want to give this disease to someone else. At that time I looked for anywhere that had a tissue bank for ME/CFS studies and couldn't find one. I just wrote that I'd like my body given to ME/CFS research, if possible. There is a brain bank at Harvard, and I have said that if there isn't a place doing specific ME/CFS research, I'd like my brain donated to them. At least they're keeping tissue for brain disease research, so it might be used for ME/CFS in the future. And I have told my husband that I would like an autopsy performed. (I have to tell you that these conversations were no fun, but I believe they are important.)

    I think it would be great if there were a tissue bank where we could register in advance. I think they are very expensive to set up and maintain, though, and most ME/CFS research is done on such a shoestring. Heck, we had to pass the hat to buy Lucy Bateman a computer. We'd have to hold a lot of bake sales to set up a tissue bank. It's another Catch-22. We won't be taken seriously until the research is done, and we won't get funding for research until we're taken seriously.
     
  15. Sing

    Sing Senior Member

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    klutzo, I thank you both for your helpful information and for your moving self disclosure. I received more from your post than any in a long time. It speaks to me, at age 61, having struggled with ME/CFS for decades, and facing a future that is unknown. Continuing as I am, physically, there is no doubt that my life will end sooner than normally expected. I could die in a car crash, due to brain fog and slow reactions. My disautonomic symptoms of all kinds could amplify, would amplify, with any other stressor, illness, or accident. I have had to work to breathe enough for going on two years. Chewing and swallowing have become conscious efforts. Digestion gets increasingly limited and problematic. I could go on. Weakness, pain, sensitivities, waking up through the night. Clothing sensitivities that have increased to an absurd degree. Temperature difficulties. Being so cold. Wearing heavy clothes when others are in T shirts. A lot to deal with. Memory trouble. Incoordination. Multi-tasking inability. So many things which provide an obstacle course, largely invisible (except for my clothes!)

    A lot of the time, I "let go of" the negative reactions I feel--most of the time I am trying to and do. I focus on appreciation, doing something positive in the present, or creating something good. But sometimes I get flooded in the backwash. I cave in. That is all I can say.

    Sing
     
  16. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Do you have a good doctor that helps you with the symptoms, disautonomic problems etc. What supplements are you on? There are some great things for sleep too. You need a really good supportive regime from a good doctor. There are some great programs out there.
     
  17. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Are you on Oxygen? Do you think it would help you? you say: I have had to work to breathe enough for going on two years. Not sure if this is part of disautonomic symptoms?
     
  18. glenp

    glenp "and this too shall pass"

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    Another one of us has passed on

    I am so sad today. Many years ago my mother nodded off for the last time, the fire got her. She never even knew she had this illness but I know she did.

    After I nodded off at the wheel a few times the doctor gave me amphetamines. My mother didnt get that and neither did my friend Eddie Bauer, he was one uf us. I posted a comment but it never got posted. Here is a link to the newscast. How many of us die this way because of this illness and die after nodding off at wheel

    http://www.pnwlocalnews.com/south_king/ren/news/95815494.html
     
  19. Martlet

    Martlet Senior Member

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    I'd like to add my thanks. Parvo did a brilliant job.

    On Longevity, my friend who fell ill in the late Eighties is now seventy. She is still sick but considerably improved, although I can't work out whether that's an actual physical improvement or whether she has just learned to better manage her illness over the years.
     
  20. Martlet

    Martlet Senior Member

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    The link doesn't work, Glen, but I am so sorry to hear of the death of your friend. I wonder how many die of all manner of accidents, especially around the home.
     

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