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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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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'm not at all afraid of dying, but I am afraid of old age combined with being this ill.[/QUOTE]

    I feel similar to Min

    I believe that many are dieing of illnesses caused by this disease and not knowing it.

    When some disappear from the forums its sad to say but some have gone home and none of us internet friends know.

    I know of one gal who was 38 and had a heart attack and lived but I've never seen her post shortly there after. Another friend was in his early 50's and passed away of a heart attack.

    It would take someone with lots of energy to keep track of everyone and find out what happens with those of us that disappear, I don't think any of us have the energy to take that on. I started getting the heart symptoms about 5 years ago and am taking omega oil and coq 10 to try and prevent damage. I am pretty sure if I pass on from a heart attack it will be cause of death - heart attack and no mention of cfs. Its going to take a long time.

    glen
  2. parvofighter

    parvofighter Senior Member

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    Don't panic... but also don't feel invalidated

    I just realized after posting that I really wanted to accomplish two things, and most importantly didn't want to invalidate anyone's concerns:

    • On the one hand: I have seen a number of discussions on this theme, where members are really concerned that the average age of death is 55. My purpose in the post was to reassure members that that is NOT what the research says. All we can conclude so far is that many of us seem to be dying earlier than the norm, from cancer, heart failure, or suicide. But there is no hard and fast result that there is something magical about 55.
    • On the other hand: I think it's absolutely vital to emphasize how seriously ill many patients are, and that there are serious risks associated with this disease, including mortality. Bottom line, my instinct is that concerns about early mortality are very real for some ME/CFS patients.
    In short, yes, you have every right to be concerned. We just don't know yet from the research just how concerned we should be. But there is no hard-and-fast rule that once you hit 55, your days are numbered.
  3. Sean

    Sean Senior Member

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    Simply put, if we have a normal life span, the risk factors touted by the establishment are a myth.

    Damn good point.
  4. ixchelkali

    ixchelkali Senior Member

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    I feel that way, too. But it has occurred to me that old age itself doesn't hold the fear for me that it does for a lot of people: I've had lots of practice. The things that most people are afraid of, the loss of mental acuity, loss of memory, aches and pains, loss of independence, loss of vitality? Well, I've been there, done that. So I don't have to be afraid of it. I've already developed coping mechanisms. In a way, I just got a head start on old age.
  5. glenp

    glenp "and this too shall pass"

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    60 today

    I am 60 today and made it so far. I joined the seniors centre and for the past month have been able to go once a week :Retro smile: All of the people there are older then me. I do notice that most of their brains work better then mine. Some are in their 90's, I feel as one of them. So yes a head start on old age sounds appropiate.

    glen
  6. paddygirl

    paddygirl Senior Member

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    Happy Birthday Glen!

    :victory:

    Happy Birthday to you!

    I have a neighbour who became a friend, she has regular meals for friends and I feel like the oldest one there every time even though I'm the youngest.

    The last time I was there one of her friends - just turned 70 - regaled us with tales of her new boyfriend, and ended the night by dancing to Viva Espana on a chair! She had back problems and had a heart bypass operation a few years ago.

    I'm definately the party pooper, not drinking and trying to hide the fact, and leaving early. I know it's boring of me. I'm trying to walk the line between staying in touch with friends and keeping enough energy to work .

    After many years of being a single mum and quite isolated I could now be out many nights of the week but don't have the energy or the money!

    I have put my name on a list at WPI for treatment or even just assessment when they open, my concern is my heart but my doctor isn't listening. I'm not sure if my workplace insurance will cover it but I'll bump up my mortgage if I have to.

    It's a beautiful world out there and I want to hang around.:Retro smile:
  7. caledonia

    caledonia

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    I have to admit, I had to read that one a few times to get the actual meaning - lol. Like her friends are meals, not you all get together for dinner.

    Anyhoo, my mom died of cancer at age 80. She had CFS for 37 years. If she didn't have cancer, based on her siblings' longevity, she would have made it to 92 or so. So her life was probably shorter, but it blows away the 55 theory.

    But the part that scares me is that she had cancer 5 times over 20 years.
  8. taniaaust1

    taniaaust1 Senior Member

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    Min.. if it's the CFS causing the foot drop, try not to worry too much as it may get better. When my CFS was worst, i had foot drop along with a leg drag (i kept tripping up cause that leg didnt walk properly and the foot drag would trip me up), but it went away once my CFS improved. (i havent got MS).
  9. taniaaust1

    taniaaust1 Senior Member

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    Several years back when some CFS experts were brought together to give a talk in my country.. one of them talked about a rare form of brain cancer he'd come across in some of his patients, which is far more common in us. Other forms of rare cancers are more common too.

    We will never know the true extent of the CFS suicides until this illness is better diagnosed, many kill themselves due to the stress of not being believed and not being able to get help, before they have managed to get a diagnoses.
  10. Sing

    Sing Senior Member

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    Dr. Byron Hyde of www.nightingale.ca (from Ottawa, Canada) has been diagnosing and studying people with ME since the mid 1980's. I read last year that he finds a much higher incidence of thyroid cancer with us. He is one doctor/researcher who I think tries to look reality in the face. However, when he speculates, he can come up with some unpopular opinions--for instance, he didn't immediately think that XMRV is causative. The scientific answer is still unknown, so I can't criticize him too much for this. But I wish he had taken a firm, "We don't know" position rather than a "Probably not" position. Still, he has quite a wealth of knowledge about ME, and where the science is taking us---the jury is still out.

    Sing
  11. Jenny

    Jenny Senior Member

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    I'm just 60, and have had this since I was 32. I've had long periods of good health, but have been going downhill in the last few years. I keep reminding myself though that I'm doing better than a lot of the non-ME friends I had in my 30s, about a third of them died in their 50s and 60s, mostly from cancer.

    Perhaps we should remember that cancer (and heart disease - my father died of this at 58) are sadly very common in previously healthy people.

    Jenny
  12. Mithriel

    Mithriel Senior Member

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    I have been ill since I was fourteen and am now fifty six.

    I now have diabetes and high blood pressure, but I have bad family genes. I am remarkably well in other ways.

    As I said in another post, having been ill all my adult life has protected me from some of the things my contemporaries are going down with.

    I have never had a permanent job so I do not have any of the consequences of noxious chemicals and repetitive strains.

    I have never travelled to picked up strange parasites or skin cancers from too much sun.

    I have never smoked or taken much alcohol.

    No sports, obviously.

    I have always had a fairly healthy diet.

    Some of the things cancel out.

    Mithriel
  13. Mithriel

    Mithriel Senior Member

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    I am fifty six and have been ill since I was fourteen, wheelchair user since I was thirty seven.

    Since getting diabetes, I am constantly monitored for complications. ME/CFS should be monitored in the same way. Strangely the diabetes may be a good thing for me as I am getting the medical attention I need.

    ME/CFS has heart problems and all the other things as a direct part of the illness but we also have the other general risk factors associated with an inactive life and the weight gain many of us have had.

    We also avoid some causes of death like industrial chemicals and dangerous sports. (Like those celebrities who die in their private planes, we don't have to worry about that!)

    Worrying is useless (if inevitable). We have a serious illness, why would we expect to have a very long life. We do what we can to maximise our health anyway so that is in our favour.

    I don't believe it is in anyone's interests to minimise the risks we have just to feel better. ME/CFS is trivialised enough we should not add to that. The sooner it is taken seriously and our health is monitored as it should be the better.

    I have had a lot of good things in my life. I do not want to go yet as there are still things I want to do, but I consider myself lucky to have had what I have. Many of my friends with MS are gone.

    Mithriel
  14. Rrrr

    Rrrr Senior Member

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    Parvo, this was an amazing post! thank you. i will contact Judy M at WPI and ask if they want to consider setting up a post-mortem tissue bank, providing some kind of vehicle so patients can register in advance.

    Can someone else ask Drs. Klimas, Cheney and Lapp, and Montoyo and others??????? I don't know them so can't ask them as easily.

    Parvo: can I have a copy of your "just in case" instructions to give to my family for me, when I die? I'd really appreciate that.

    THANK YOU TO EVERYONE WHO HAS POSTED ON THIS THREAD!!!! i really love you all. and i need you all, too.

    warmly,
    rrrr
  15. Cloud

    Cloud Guest

    Thank you Parvofighter.....most excellent info for dispelling anxiety on this issue. I think your right that the NCF memorial list and Jasons subsequent study is the source of much of the "early demise" talk. There is also the "talk" of the high rate of cancer with the original Incline Village group.....but I haven't seen any reliable stats on that...only chatter.
    Most of us would gladly sign up for participation with a post mortem tissue bank and....I think we should pursue this idea. I'll try and ask Dr Peterson with my next visit. I too have written up a "post mortem" script for my family to disseminate publicly with the intent of overriding the inevitable bogus report from an uniformed coroner. They have downplayed my condition in life....I will not tolerate it for my demise. I want the last word on my life. I'm 55 and have had ME/CFS for 17 years, yet I don't feel that I will check out all that much earlier than the norm for a guy like me. Besides, I've already lived through the worst this disease can dish out and now climbing back from the abyss.
  16. glenp

    glenp "and this too shall pass"

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    I asked my doctor to please see that my body goes to help those with CFS when I die.

    Sometimes we have to push the heart issue with our doctors, many dont know. I think mine realized it when he sent me to a cardiologist and my bp was high he wanted me on meds right then ( I refused ) the next time he thought his monitor was faulty as my bp was 77/44 I am glad that I did not follow the cardiologists advise and take meds to lower it. ( I did stop taking effexor ) When I passed out and got a concussion the rehabilitation doctor thought that it was from low pb. We really have to watch ourselves. The other cardilologist sent me to an internist (took 6 months) who apparently treats hundreds of CFS patients --I told him I have dysautonomia and he said he hasn't heard of it. It boggles my mind. My rehab physician says no physicians here know much about it but did give me a referral to a cardiologist at UBC. I am learning everything from all of you. Originally I saw Dr Bruce Carruthers - he does lots of testing right then and there- has you for as much time as needed and can tell by the poor mans test. I had originally been told I had panic attacks -- my symptoms were worse when shopping because of the standing so that fits with panic attacks and malls.

    glen
  17. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    It's "nice" to see they mention CFS, although I guess you would probably have ME written instead? Scary, I am 39!
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    ukxmrv: I agree. They really need to study this and it's hard bc of reluctance to cite ME as a cause of death.

    I wonder whether she had ME/CFIDS or just Oxford/ British "CFS". I would guess ME since she died as ME sounds more likely as a cause of death than 'SADS' which stands for "it's some SAD Sh!t that we doctors are so incompetent." :Retro mad: It's pretty outrageous to see observation that she had "CFS" and was supposedly totally "fit and healthy".

    If one believes Dr. Lerner and Dr. Cheney, and I certainly do, that many/most/all of us have myocarditis/ ventricular failure then that should be a major cause as Dr. Jason noted. I just checked my merck manual today and 70% of people with cardiomyopathy die within 5 years of symptom onset- usually suddenly.
  19. Rrrr

    Rrrr Senior Member

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    glen, for low blood pressure, consider taking salt and water and licorice root extract.

    rrrr
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The extremely strong association between non- hodgkin's lymphomas and ME is by itself incontrovertible proof that ME is a serious somatic disease. Below is a repost of a post I made on a lymphoma thread about this crucial issue:

    http://www.forums.aboutmecfs.org/sh...nd-LYMPHOMA/page2&highlight=studying lymphoma


    Seymour Grufferman, probably the world's foremost cancer epidemiologist and holder of three doctorates in epidemiology, made several grant proposals to NIH in the early years to study the extraordinary rates of cancer in ME and was turned down every time like everyone else who applied to study ME for years.


    Chillingly, in response to my above post, forum member camas posted that her husband died of Burkitt's and she hadn't known of the association.

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