I have seen a number of references on these forums to decreased life expectancy among patients with ME/CFS. I wonder if anyone can point me in the direction of any pertinent peer reviewed published studies that have looked at this. In addition, I would like to hear of any on going studies on this subject. Thank you for your help.
Life Expectancy and CFS/ME
- Thread starter dean
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Sing
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For a thorough overview of this topic, see either www.ahummingbirdsguide.com or the easier address, www.hfme.org and scroll down on the left column to ME deaths
This whole topic is extremely important, and as you might expect, there has been little research upong it.
Sing
This whole topic is extremely important, and as you might expect, there has been little research upong it.
Sing
Only two studies that I know of http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Mortality
gracenote
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Here is one of the studies. It includes both chronic fatigue and chronic fatigue syndrome. It doesn't appear to be a particularly strong study.
And the other one by Jason.
And the other one by Jason.
I have read in several places that the average age for CFIDS death is 55 years old. Never did see a really good study on that number though. So, do NOT freak. There are lots of CFIDS people living a long life. And some of those even get better after years of illness.
There are so few studies done on CFS, let alone ME, that it is impossible to get a "scientific" answer.
Over the years, people have complained bitterly that doctors will not put ME on death certificates as a contributing factor because it is not seen as being serious enough to be a cause of death. The lack of people who have died from ME is then taken as proof that it is not an illness that causes death.
All nice and cosy for the deniers but not so good for us. Not serious, no research, only treatment CBT.
There have been cases where no other cause except ME could be found and doctors have been forced to put it on the death certificate but this massively underestimates the reality.
Take a similar disease. MS does not of itself cause many deaths though it can have a direct effect on the gut and breathing mechanisms in particular. More commonly, death in MS is usually a consequence of having the illness. Lack of mobility and inability to live properly leads to heart disease, cancer, osteoporosis and pneumonia.
ME must be similar or worse as we have even less quality of life. Our health is compromised by the disease affecting the heart and gut and possibly by directly causing cancers but we are very immobile with all the risks that entails.
We are also very oppressed, a risk factor for heart disease. We often live in poverty; we often have to settle for what we can eat rather than the healthy diet we would like; we get overweight after years of illness; we take medicines that have side effects.
Simply put, if we have a normal life span, the risk factors touted by the establishment are a myth.
Having said that we are less at risk of some of the things that kill people. Death during extreme sports, plane crashes and car crashes, oh, and alcohol related problems :Retro smile:
Worrying about what could kill us is not useful. Looking to do everything we can to keep risk to the minimum is fine but if their is nothing we can do we just have to accept it. We have a serious life long illness. Every day we manage to get something out of life is a bonus.
When ME was still respectable, before CFS was invented, the patient groups minimised the seriousness of it because people newly diagnosed didn't like to hear how bad it was. This was short sighted. If it isn't serious, why bother putting money into it.
The myth that most people get better in a few years is reassuring for some, but everyone loses in the end because it trivialises all of us and denies the reality that most people actually stay very ill for years.
Not having peer reviewed studies which confirm this means nothing as no one who can fund then wants to know that ME/CFS can kill. Its our life, no one else cares.
Mithriel
Over the years, people have complained bitterly that doctors will not put ME on death certificates as a contributing factor because it is not seen as being serious enough to be a cause of death. The lack of people who have died from ME is then taken as proof that it is not an illness that causes death.
All nice and cosy for the deniers but not so good for us. Not serious, no research, only treatment CBT.
There have been cases where no other cause except ME could be found and doctors have been forced to put it on the death certificate but this massively underestimates the reality.
Take a similar disease. MS does not of itself cause many deaths though it can have a direct effect on the gut and breathing mechanisms in particular. More commonly, death in MS is usually a consequence of having the illness. Lack of mobility and inability to live properly leads to heart disease, cancer, osteoporosis and pneumonia.
ME must be similar or worse as we have even less quality of life. Our health is compromised by the disease affecting the heart and gut and possibly by directly causing cancers but we are very immobile with all the risks that entails.
We are also very oppressed, a risk factor for heart disease. We often live in poverty; we often have to settle for what we can eat rather than the healthy diet we would like; we get overweight after years of illness; we take medicines that have side effects.
Simply put, if we have a normal life span, the risk factors touted by the establishment are a myth.
Having said that we are less at risk of some of the things that kill people. Death during extreme sports, plane crashes and car crashes, oh, and alcohol related problems :Retro smile:
Worrying about what could kill us is not useful. Looking to do everything we can to keep risk to the minimum is fine but if their is nothing we can do we just have to accept it. We have a serious life long illness. Every day we manage to get something out of life is a bonus.
When ME was still respectable, before CFS was invented, the patient groups minimised the seriousness of it because people newly diagnosed didn't like to hear how bad it was. This was short sighted. If it isn't serious, why bother putting money into it.
The myth that most people get better in a few years is reassuring for some, but everyone loses in the end because it trivialises all of us and denies the reality that most people actually stay very ill for years.
Not having peer reviewed studies which confirm this means nothing as no one who can fund then wants to know that ME/CFS can kill. Its our life, no one else cares.
Mithriel
lansbergen
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Simply put, if we have a normal life span, the risk factors touted by the establishment are a myth.
Well said. I agree.
Well said. I agree.
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
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
alex3619
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Hi
There was as small scale study in Australia some years ago that surveyed CFS patients. I do not recall the name, but I think the Victorian ME/CFS association printed it in one of their publications. They showed that one in ten CFS patients had attempted suicide, and this number jumped to one in six for long term patients. I am less than convinced this has a lot to do with depression, I think it is more about quality of life and despair at how we are treated.
We have huge risk factors for early deaths. One that often gets overlooked is elevated homocysteine, which is a major risk factor for cardiovascular disease, even worse than cholesterol.
I do know I have read many more than three reports over the years, but I think several were government agency reports including from the CDC. Maybe someone can say more about this, I have forgotten most of it.
bye
Alex
There was as small scale study in Australia some years ago that surveyed CFS patients. I do not recall the name, but I think the Victorian ME/CFS association printed it in one of their publications. They showed that one in ten CFS patients had attempted suicide, and this number jumped to one in six for long term patients. I am less than convinced this has a lot to do with depression, I think it is more about quality of life and despair at how we are treated.
We have huge risk factors for early deaths. One that often gets overlooked is elevated homocysteine, which is a major risk factor for cardiovascular disease, even worse than cholesterol.
I do know I have read many more than three reports over the years, but I think several were government agency reports including from the CDC. Maybe someone can say more about this, I have forgotten most of it.
bye
Alex
Dean said: what about doctors who have been treating patients for over 20 years.
I have asked my own doctor about numbers on his CFIDS people since he's been in the game now for over 20 years and he will not answer any of my questions on CFIDS cancer rates, age of death, etc.
He did tell me that he had two 90% recoveries in one week though. I asked him how sick they were and for how long and he didn't respond. I think the treating physicians just don't want to put their necks out there on cancer and death information that they see. The won't give progression either - really because they can't.
I have asked my own doctor about numbers on his CFIDS people since he's been in the game now for over 20 years and he will not answer any of my questions on CFIDS cancer rates, age of death, etc.
He did tell me that he had two 90% recoveries in one week though. I asked him how sick they were and for how long and he didn't respond. I think the treating physicians just don't want to put their necks out there on cancer and death information that they see. The won't give progression either - really because they can't.
A discussion on dying from cfs or cfs-related causes
hi all,
i've been reading more and more lately that people with cfs can die from cfs or cfs-related causes. and how we are more prone to get cancer. and how our life expectancy is 55.
why am i reading about this MORE now? is this new info? or am i just getting to hear it now for some reason.
i'm not that far from 55 (less than 10 yrs). are there folks on this forum who are over 55, or is it universally true (!!) that we'll all die around that age. where did that study come from?
is everyone on this forum under 55?
this is all very sad. is anyone else sad about it all?
what do you all think about this topic?
best,
rrrr
hi all,
i've been reading more and more lately that people with cfs can die from cfs or cfs-related causes. and how we are more prone to get cancer. and how our life expectancy is 55.
why am i reading about this MORE now? is this new info? or am i just getting to hear it now for some reason.
i'm not that far from 55 (less than 10 yrs). are there folks on this forum who are over 55, or is it universally true (!!) that we'll all die around that age. where did that study come from?
is everyone on this forum under 55?
this is all very sad. is anyone else sad about it all?
what do you all think about this topic?
best,
rrrr
Sunday
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I know not everyone on this forum is under 55. I'm sure no expert on this, but from what I've read I'd say that there is evidence out there that there are specific organ failures that happen with CFS: congestive heart failure, pancreatic failure, and kidney failure being the top three. My understanding is these take a long time, like decades, to play out.
I'd be interested to know what sources you were reading, can you give links? Might help the discussion. The problem I have read more about is doctors and other medical officials pooh-poohing the notion that we have any physiological problems at all.
I'd be interested to know what sources you were reading, can you give links? Might help the discussion. The problem I have read more about is doctors and other medical officials pooh-poohing the notion that we have any physiological problems at all.
ixchelkali
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I'm over 55, and still going. Not going strong, but going.
Unfortunately, we don't have any good epidemiological studies to provide us with accurate information about this. Since the CDC has never made CFS a reportable disease, we don't even really know what people with ME/CFS have died of. The information we have has largely been gleaned from patient organization lists, I believe.
I have sometimes felt sad about this, and sometimes relieved of the worry that I'll end up old and broke and sick with no one to care for me. But mostly I've decided that since we don't have good data yet, I'll make like Scarlett O'Hara and say "I'll think about that tomorrow."
Besides, even in diseases where the statistics are well known, the numbers don't tell you what will happen to you. They just give you an indication of risk.
Overall, it's just one more thing that we don't know because the research hasn't been done, and that's frustrating. It's one more big question mark because of the "official" position that this isn't a serious illness. That seems to be beginning to change. But I'm reminded of Psalm 6:3 "My soul is in anguish. How long, O Lord, how long?"
Unfortunately, we don't have any good epidemiological studies to provide us with accurate information about this. Since the CDC has never made CFS a reportable disease, we don't even really know what people with ME/CFS have died of. The information we have has largely been gleaned from patient organization lists, I believe.
I have sometimes felt sad about this, and sometimes relieved of the worry that I'll end up old and broke and sick with no one to care for me. But mostly I've decided that since we don't have good data yet, I'll make like Scarlett O'Hara and say "I'll think about that tomorrow."
Besides, even in diseases where the statistics are well known, the numbers don't tell you what will happen to you. They just give you an indication of risk.
Overall, it's just one more thing that we don't know because the research hasn't been done, and that's frustrating. It's one more big question mark because of the "official" position that this isn't a serious illness. That seems to be beginning to change. But I'm reminded of Psalm 6:3 "My soul is in anguish. How long, O Lord, how long?"
i've been sick for 20+ yrs, so if it takes decades for real problems to develop, i'm there now!
you ask about where i have seen these dying issues mentioned. the cancer issue is all over the place. lots have posted about how folks with cfs can get cancer easier, or that it runs in the families of people with cfs (likely from xmrv). especially leukemia.
the mentions of dying were also on a thread on this forum (i think) about a woman in the UK who just died, perhaps from cfs. and maybe there was also a mention of how we have a shorter life expectancy on a recent hillary johnson blog, i think, and on that other cfs journalists' blog: http://www.cfscentral.com/2010/06/are-you-smarter-than-9th-grader.html -- i don't recall her name right now. i'm too tired to go digging today, i'm sorry. but i have just seen it mentioned waaaaay more than usual these last 3 or so months.
xxoo
rrrr
you ask about where i have seen these dying issues mentioned. the cancer issue is all over the place. lots have posted about how folks with cfs can get cancer easier, or that it runs in the families of people with cfs (likely from xmrv). especially leukemia.
the mentions of dying were also on a thread on this forum (i think) about a woman in the UK who just died, perhaps from cfs. and maybe there was also a mention of how we have a shorter life expectancy on a recent hillary johnson blog, i think, and on that other cfs journalists' blog: http://www.cfscentral.com/2010/06/are-you-smarter-than-9th-grader.html -- i don't recall her name right now. i'm too tired to go digging today, i'm sorry. but i have just seen it mentioned waaaaay more than usual these last 3 or so months.
xxoo
rrrr
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.
I'm not at all afraid of dying, but I am afraid of old age combined with being this ill.
parvofighter
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We don't necessarily die @ 55
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:
Jason et al rightly point out in the Discussion section that they don't know if their sample was representative:
So on to Jason et al's actual findings:
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:
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:
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 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.
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: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.
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 )
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.