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Life Expectancy and CFS/ME

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
 

parvofighter

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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.
 

Sean

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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.
 

ixchelkali

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I'm not at all afraid of dying, but I am afraid of old age combined with being this ill.
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.
 

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
 

paddygirl

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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:
 
:victory:

she has regular meals for friends
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.
 

taniaaust1

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I'm 58 - been very ill & in extreme pain for over 20 years & have more and more symptoms, like foot drop & continually bringing up white foam from my lungs, that are just treated with derision by the medical profession here so I've no idea what they indicate.

I'm not at all afraid of dying, but I am afraid of old age combined with being this ill.
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).
 

taniaaust1

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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.
 

Sing

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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
 

Jenny

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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
 

Mithriel

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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
 

Mithriel

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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
 

Rrrr

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Rrrr, you're absolutely right that the researchers suggest that a subset of us die younger. But it's important to look at the statistics. The paper that I think you're referring to is Leonard Jason's 2006 paper entitled: Causes of Death among Patients with Chronic Fatigue Syndrome ( http://www.ncf-net.org/library/CausesOfDeath.pdf )

Who did they study?
Firstly, it's important to examine who exactly Jason's team studied. This was a retrospective study, meaning they didn't track a whack of ME/CFS patients over time, but instead looked at the stats of patients who had already died:
The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS....
Was this study representative of patients with CFS?
Jason et al rightly point out in the Discussion section that they don't know if their sample was representative:
It also was unclear how representative the memorial list is and from
what population it draws its data. Clearly, it is not possible to generalize the
data from this memorial list to the overall population of patients with CFS.
In other words, their findings may not necessarily extrapolate to the larger ME/CFS population. At a minimum however, given the stark differences in age-of-mortality for cancer, suicide, and heart disease from this retrospective review, it raises a red flag about possible early mortality in ME/CFS. And it is a natural conclusion that Jason's team recommended the following:
Longitudinal prospective studies with community-based samples are needed in order to better understand the unique health risks associated with having CFS.
What were the findings of this retrospective study?
So on to Jason et al's actual findings:
The authors examined causes of death in a sample of individuals that were listed on a memorial list from the National CFIDS Foundation. Among those listed, approximately 20% died from each of the following three causes: heart failure, suicide, and cancer. The number deaths of women reported was approximately three times the number deaths of men reported. (My note: what you would expect, given the prevalence of ME/CFS being higher in women) Further, those who died from suicide were significantly younger than those who died from heart failure. Overall, at least among this group of individuals, there were increased risks of death associated with heart failure, suicide, and cancer.
Did everyone die at 55?
The short answer is no. The gist of their findings is that among the patients dying of cancer, suicide, and heart failure in this particular ME/CFS cohort, members died significantly earlier than the ages associated in the normal population with death from cancer, suicide, and heart failure:
When examining ages of death, we found that those dying of suicide were significantly younger than those dying of heart failure. Another intriguing finding was the overall ages of death for those dying of cancer, suicide, and heart failure. If one examines national rates of death for these conditions, the ages of death for these three conditions among the patients with CFS are considerable earlier. The median age of death for cancer in the United States is 72 (Reis et al., 2003, versus an average age of 47.8 for the CFS sample), the average age of death for suicide in the United States is 48 (Centers for Disease Control, 2003, versus an average age of 39.3 for the CFS sample), and the average age of heart failure is 83.1 (CDC, 2003, versus an average age of 58.7 years for the CFS sample). What this suggests is that those from this memorial list who did die of cancer, suicide, and heart failure were considerable younger than what would have been expected from the general population, which means that CFS might have increased the risk of death for at least this sample.
The take-home message
It appears that there are risks associated with early death among patients with ME/CFS, particularly from suicide, cancer, and heart failure. This research does NOT conclude that the average age of death for ME/CFS patients is 55. Based on the sample limitations, we just don't know how bad those risks are. But it appears there is relatively more risk of dying earlier from suicide, cancer, and heart failure. And remember that only accounted for 60% of an ME/CFS sample that may or may not be representative.

Urgently needed research
I believe we can expect tremendous interest in ME/CFS "natural history" to emerge from the XMRV findings. We really need to understand just what those mortality risks are:

  • What are the key causes of death associated with ME/CFS?
  • What are the early warning signs?
  • What are the risk factors, particularly the modifiable risk factors? (things you can do to minimize risk, such as taking beta blockers - under doc's supervision of course - for high blood pressure, to reduce strain in heart failure )
Personally, I believe we desperately need to integrate the "macro" research that folks like Drs Jason, Cheney etc are doing, with the masses of immunohistochemical and viral-specific research from the last decade by particularly German cardiologists, on the differential presentation (and treatment) of cardiotropic viruses in patients with fatiguing illness - particularly ME/CFS. (Just do a keyword search of "virus and myocarditis" on PubMed: http://www.ncbi.nlm.nih.gov/sites/pubmed

In Dr Jason's introduction, he references a 2001 technical report by the Agency for Healthcare Research and Quality that highlighted the challenges in understanding recovery/improvement or relapse from ME/CFS. Their recommendation really captures what we need from our researchers:
The authors recommended that studies need to be done to determine the long-term natural history of CFS in longitudinal cohorts that included representative samples.
The Medico-Legal Route
The tragedy too is that when ME/CFS patients die, they don't always get an autopsy. So "cause of death" from heart failure for example, may be put down to "idiopathic cardiomyopathy", or heart muscle disease of unknown cause. Which just doesn't have the same clout as "viral cardiomyopathy" - a diagnosis that can be made IF the heart is biopsied, and subjected to PCR and immunohistochemistry. Of course the research on XMRV needs to expand into the cardiac arena, so that prevalence of XMRV in the heart muscle can be researched. Can XMRV be asymptomatic (as say Parvovirus B19 can be) in the heart? How does one differentiate between a latent and active infection (eg. immunohistochemistry)?

And getting to the "heart" of things... can the bereaved families of ME/CFS patients sue caregivers if they refused to provide cardiac care, while the patient was dying from virally-induced heart failure? Might risk of lawsuits be the nudge the health care system needs to start taking premature ME/CFS deaths seriously?

What you can do - "just in case"
Suffice it to say that I've given my spouse specific instructions to insist on a full autopsy, with info on competent labs to send PCR samples to, IF things go south. And I've also given my blessing that my family should go for the jugular legally, if this happens.

A post-mortem tissue bank for the ME/CFS community?
Even better however, might be if a leading institution were to begin a post-mortem tissue bank, and provide some kind of vehicle so patients can register in advance. Then, if they die prematurely, everything is set up to appropriately collect tissues for competent cause-of-death analysis.
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
 
C

Cloud

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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.
 

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
 

*GG*

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It's hard to get the right figures on CFS deaths when it doesn't appear on the death cert. Rather like classifying each AIDS death due to the opportunistic infection or unknown cause.

Here's one example of a recent and tragic young CFS death. Note that although she had CFS, she was described as "fit and well".

http://www.hertsad.co.uk/news/death_of_quite_fit_and_well_harpenden_woman_a_mystery_1_443234
It's "nice" to see they mention CFS, although I guess you would probably have ME written instead? Scary, I am 39!
 

justinreilly

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It's hard to get the right figures on CFS deaths when it doesn't appear on the death cert. Rather like classifying each AIDS death due to the opportunistic infection or unknown cause.

Here's one example of a recent and tragic young CFS death. Note that although she had CFS, she was described as "fit and well".

http://www.hertsad.co.uk/news/death_of_quite_fit_and_well_harpenden_woman_a_mystery_1_443234
It's "nice" to see they mention CFS, although I guess you would probably have ME written instead? Scary, I am 39!
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.
 

Rrrr

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

rrrr
 

justinreilly

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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

This link has been known since the beginning (the tahoe cohort outbreak) with very good people trying to work on it but of course they got no funding from NIH or CDC. Research on the connections between ME and XMRV on the one hand and NHLs and the other hallmark ME cancers on the other is absolutely essential and to my knowledge only one study (that would hardly even qualify as a pilot study just looking at incidence) has been done.

It is also very important to publicize the connection, as WPI has been doing, for PR reasons- to get people to take ME as a serious somatic disease probably caused by retrovirus(es). Also the fact that ME - NHL connection is so incredibly strong is very important for PR since a lot of the science has shown tons of abnormalities, but the correlation of the vast majority to ME is somewhat weak or moderate.

IMO, emphasizing the connection is the best and most straightforward and convincing argument to use against those who suggest psychogenesis, so that's what i tell them. Urge you guys to too!

As Osler's Web noted, Burkit's Lymphoma was so rare in the US until the mid '80s that there were only about 10 new cases per year in the entire US!! Of the tahoe cohort, I have read in different places that either 9 or 19 have NHL and I think (but not sure that) the majority of those are Burkitt's. (I have also heard talk on PR of 77 cases, but this is the number of people in the cohort with the clonal t-cell receptor rearrangement that often presages lymphoma- so i think this was just a confusion for this reason). There were others at Tahoe who contracted NHL but not ME.

Then there was the curious case of the woman from South Africa, as detailed in OW. c. 1983 I believe, she contracted a viral illness just before leaving to visit four relatives in four parts of the US. She returned home and subsequently was diagnosed with Burkit's lymphoma which is relatively common in Africa and is associated with EBV infection. Later, all four relatives in four different parts of the US died of Burkit's lymphoma. Again the chance of any one, much less four, individual getting this disease at that time in the US was about 30 million to one. One of these relatives visited Lake Tahoe just before the outbreak.

That's an open and shut case for transmission of a microbe that causes both ME and NHL if there ever was one. Does anyone agree or disagree?

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.