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.
