ME/CFS Mortality

Does ME/CFS kill? This critical question has received very little attention from researchers, but there is a way for you to help change that.

The first paper on causes of death in ME/CFS was published in 2006 by Dr. Leonard Jason, et. al. They looked at a registry from the National CFIDS Foundation, and compared the causes of death and ages of patients with general population data. They found that CFS patients who died of cancer, suicide and heart failure were significantly younger than people in the general population dying of the same causes. There are a number of limitations to the study, including selection bias of the cohort, but it was a very important signal that should have been investigated.

Despite calls from people like Dr. Lily Chu (read her CFSAC testimony on this subject from 2012), I’m not aware of any longitudinal or natural history studies collecting this sort of data. In 2012, Chang, et al. crunched numbers from the Medicare database and found an increased association with lymphoma, but again, there are serious limitations to that analysis.

Despite the dearth of good data, the IACFS/ME recently made the following statement in the 2014 revised Primer:

Even if patients get progressively worse, ME/CFS itself is not known to be fatal. (p. 26)

Dr. Chu offered a dissent at the recent IACFS/ME meeting, for a number of reasons. She said, in part:

We do not have evidence to say that ME is not fatal.  As far as I know, and please correct me if I am wrong, there are no longitudinal studies involving large ME/CFS populations that address this question. . . .

On the other hand, there have been cases, although rare, where death was attributed to ME. . .

The IACFS/ME is the only international scientific organization dedicated to ME/CFS. Anything we state should be evidence-based as much as possible. Statements surrounding mortality should be qualified to acknowledge the lack of and the need for more investigation.

So how do we resolve this? Two separate efforts are trying to determine just that.

At the recent IACFS/ME conference, Dr. Dana March presented data from the Chronic Fatigue Initiative’s epidemiology study. As reported on Phoenix Rising, of 960 survey respondents, 59 were determined to have died. The three highest causes of death were cancer (37.8%), heart disease (19%), and suicide (19%). That last number is pretty extraordinary, since in 2010 suicide deaths were 1.9% of deaths from all causes in the general population. Among cancer patients, suicide accounts for approximately twice that – 4% of all deaths. Granted, this is a very small sample size and the patients are drawn from ME/CFS specialty clinics. If the CFI data is confirmed in larger studies, suicide representing 19% of all deaths would be extraordinary.

One would think this would be a big enough signal to get the attention of CDC. We desperately need data on a large sample size to truly establish if people with ME/CFS have a higher risk of death from complications, from the disease process itself, or “secondary” causes like suicide (which is a primary cause to the person’s family and friends).

Natural history and longitudinal studies are expensive, in part because they need a lot of subjects and need to examine a long period of time. We will need CDC to do this work, or NIH to fund it, or NIH to fund the data platform recommended by CFSAC so that multiple researchers can do it. But we cannot and should not wait for government to get around to recognizing the need.

Enter Abby Brown (DePaul University) and Billie Moore (NJ CFS Association). Billie’s son committed suicide at age 46 after a 20 year battle with ME/CFS. Billie’s testimony on the subject is probably the most moving CFSAC public comment I’ve ever heard.

Now Billie and Abby have collaborated to create a comprehensive and detailed survey, with the goal of collecting more data in a more systematic way. The ME and CFS Mortality Study is IRB-approved and collecting responses now. If you know someone who passed away after having ME or CFS, then please consider participating in the study. The survey is very detailed, in order to collect complete details about the severity of illness and cause(s) of death. The estimated time required to complete the survey is one hour.

If you know someone who died after having ME or CFS, please participate. Feel free to share information about the study with other people you know, too. If you have any questions, you can contact Abby Brown at DePaulMECFSReseach AT gmail.com. Maybe this data will be enough to finally get the research we need.

 

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23 Responses to ME/CFS Mortality

  1. Tanya Marlow says:

    Fantastic project.
    It is probably worth saying that patients such as Sophia Mirza have ‘CFS’ recorded as their official cause of death. Although it is rare, it definitely happens that ME itself can kill. I suspect it is less rare than we might think, and if doctors were more aware of the fact that ME can kill, the autopsies would begin to tell their own story.

  2. Ess says:

    Most humbly I read from the link to Billie Moore’s Public Comment–exemplification to the very core of how ME/CFS steals your life away.

    This moves NO one of TPTB into legitimate swift action for real treatments for ME/CFS? SINFUL.

    Billie Moore, I am so sorry for the loss of your dear son.

    We have ME/CFS Experts and Researchers speaking up for us re BIO medical facts and findings with ME/CFS. Let’s keep up the fight!

  3. In the spring of 2013 I was, along with another CFS/ME patient and our doctor, on a major Finnish TV program talking about CFS/ME. My doctor made the claim that it doesn’t kill. I have no idea why he’d say that, as he has some very sick patients with significant heart problems etc. I of course responded explaining that sadly that isn’t true. But they cut out my rebuttal from the version that was aired! So frustrating.

    There are lots of peculiar ideas about “illness X doesn’t kill” in general. For example recently I talked with several doctors on Twitter who claimed that hypothyroidism can’t kill you! And just a few days ago I read an otherwise good article about EDS claiming EDS is never fatal. Eh. I guess the author never heard of e.g. that cohort of VEDS patients where the average age at death was 28… Non-vascular EDS isn’t so deadly but still kills people all the time.

    Almost any illness can kill. Someone I know lost his teenaged friend to a cold. Celiac disease can have fatal complications. Migraines can cause strokes. It’s important to acknowledge this, and of course try to figure out a) how often they kill b) how to best prevent it.

  4. kathy d. says:

    What happens when people get sicker and sicker, when they lose a lot of weight, lie in darkness, not moving, barely eating? When people go from being somewhat mobile to totally housebound, then one-room bound, then can’t walk around at all, even to a bathroom? Do they just stay in this state or deteriorate further? And if so, wouldn’t it be logical to assume some die?
    Where does a downward spiral end?
    There are so many unanswered questions and no one can make claims that this
    disease isn’t ever fatal if they don’t examine the facts.

  5. soof says:

    but how many had (apparently severe) depression and not ME or even CFS?

    • Jennie Spotila says:

      That’s an important point, but I’m not sure how it can be established short of ME/CFS experts reviewing patient records and trying to diagnose posthumously.

  6. Billie Moore says:

    Thank you, Ess, for your kind thoughts for me.

    I have been particularly incensed that the IACFS/ME would offer their 2014 version of their otherwise splendid Primer with the statement that “Even if patients get progressively worse, ME/CFS is not known to be fatal.” First and foremost, it is illogical to state that. Yes, I can see that they would not want to say it IS fatal without some studies proving that on a larger-than- anecdotal scale. However, the opposite is equally true: without studies proving that it is NOT fatal, the statement simply isn’t accurate. Lily seemed to be a lone voice arguing this point with the IACFS/ME board. It is shameful of this organization, which is based on providing scientific information about ME/CFS to the world, to include this statement in their Primer. It is simply not based on scientific evidence.

    In the NJME/CFSA we have an Eric Moore Physicians’ Education Fund. I have in the past sent out Primers to all of our NJ medical professionals who have been referred to us for our “Doctors’ List” to help educate them about ME/CFS. I will NOT distribute this latest version of the Primer with this statement in it. We have quite enough wrong information in the world about this disease from those who are decidedly not our friends without having more of it be published by the IACFS/ME.

    Billie

  7. Carrie says:

    My condolences to you, Billie. I am particularly struck by your son’s death because we were the same age, and I got sick at a young age, too. I am so sad for what he went through and for what you have been through as a mother of a patient. I got sick 11 years before your son. If only the government and medical profession had started taking this illness seriously back then. This is why we will keep fighting. What’s happened can’t be swept under the rug. We won’t let it be.

  8. Sasha says:

    This project is a great idea. Is it for US people only?

  9. N.A.Wright says:

    “Does ME/CFS kill? This critical question has received very little attention from researchers, but there is a way for you to help change that.”

    I’m not sure the De Paul research is actually going to be able to answer that question – or even if such a question has much meaning in the current state of knowledge of ME. What clinical test of ‘mortality’ could be ascribable to ME, given that there is currently no agreed clinical test of having the illness (or indeed illnesses) ? The De Paul research looks worthwhile because it should add to the overall picture of the (ill) health of those who are being diagnosed with ME/CFS, but unless there are consistent measures of organic failures that lead to death.

    One of the biggest confounders is the almost complete lack of data on what happens to ME/CFS patients in old age, in fact from the age of 60 ME/CFS patients largely disappear from the literature. If ME/CFS is contributory to mortality, it is in the rates of death in the early to mid post retirement age that the effect should be most notable, rather than in younger age groups who are clearly not dying in large numbers. Misdiagnosis is of course another major confounder – it only takes relatively small numbers of patients with lethal diseases which are occulted by the pre-existence of ME/CFS or where ME/CFS is a wrong diagnosis to have a dramatic impact upon the early mortality rates of those listed as ME/CFS patients.

    Suicide in chronic ill health is a problematic issue, it may be unpalatable when discussing an illness like ME/CFS for which patients need for pragmatic reasons to separate from any ‘mental health’ connection, but the coincidence of serious mental ill health and chronic illness is very high: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070773/ In those illnesses where major organic damage is involved and use of potentially lethal medications are routine, there may not always be a neat separation of the organic effects of the disease and the organic effects of self administered treatments – http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6101a3.htm There’s also a question of just how thorough or competent the investigation of non violent deaths are. Actual suicide rates in all chronic conditions may be far higher than the headline figures suggest.

  10. Ren says:

    Is there a science or ethics committee to whom the Primer misinformation can be reported?

    ——-

    Thank you, Billie (and to all who share the stories of their lives). I too am very humbled and sorry for your loss, for the world’s loss.

  11. byron says:

    i was diagnosed 2 years ago with celiac after doing my own research first. it never occured to the doctors to check for it. i have a hard time dealing with it because of the damage it has done already. teeth enamel eroding, eyesight fading, muscle cramps, irritable bowels, tired all the time, and the list goes on. the worst thing about it is how it robs you of so much everyday. i cant smile because my teeth are eroding away, i cant read without glasses, i cant work more than a few hrs or my body starts cramping, and the deppression is horrible at times. it affects so many things on a daily basis, its horrible.

  12. Jennie says:

    @Ren
    The IACFS/ME Board appointed the Primer committee, and has final approval over the content. Lily is a member of the Board and raised her objections at the IACFS/ME meeting in March. I’m not sure who else she can appeal to.

  13. Jennie says:

    @Sasha
    Good question, Sasha. I’m not sure. I suggest emailing Abby Brown to ask: DePaulMECFSResearch AT gmail.com

  14. Ren says:

    Could the Primer statement be classified as “fraud”?

    • Jennie Spotila says:

      Not by any legal definition. Differences of scientific opinion, even if one opinion is horribly wrong, do not constitute fraud.

  15. Billie Moore says:

    Sasha and others – The Mortality Study is open to all worldwide, and we have had a number of responses from Europe. We have two questions asking where the respondents live and where the deceased persons lived.

    N. A. Wright makes a good point, of course. Hard to document, in some cases, that the person died of ME/CFS causes. Nevertheless, the questionnaire has a question that will get close to it:
    without looking up the exact wording, something to the effect of – would the person with ME/CFS have died of whatever he or she did die of if the deceased had not had ME/CFS. I know of two cases – Eric being one – that the answers would definitely be NO. And I suspect that many others who show up in studies as the one by Dr. Dana March, cited above by Jenny, would not have died at the particular time they did die, and from the same causes, if they did not have ME/CFS. Eric was a true ME/CFS sufferer, by the most strict definition of ME – the ICC definition, and his suicide was driven by his total loss of life as others live life. Also of the lack of seeing any treatment coming along from any source. Depression had never been part of his life.

    Regarding the IACFS/ME, I sent a letter to the board and Primer committee the same day I made my comment above. Some of them are looking for support to not include the “it is not known to be fatal” comment in the new Primer. It was removed once and then reinserted by the board. If others write to them, it would certainly help.

    Billie

  16. Ron Graves says:

    For me there is no doubt that ME kills (directly, rather than as a corollary or through suicide). Here, in Britain, the evidence exists. The death rate is low, but it’s very real.

    As for suicide, ME has stripped me of everything that ever made life worth living, and the only reason I haven’t pulled the plug is that I keep hoping things will, somehow, improve.

    They never do.

    In my 29th year with ME.

    The thought of a 30th year fills me with horror. I really do not want to be here.

    • Jennie Spotila says:

      I understand, Ron. It’s so hard to hang on when we don’t know how long it will be before things improve. I hope you have supportive people in your life to help you keep going.

  17. Ren says:

    I confused IACFS/ME with CFSAC, and so while I still believe the primer statement is a problem, I have to admit that context does affect how I perceive possible implications/intent associated with the statement. And as suggested, I will write and (kindly of course) share my concerns though.

    Ron, I’m sorry for your suffering, and wish you continued strength.

  18. N.A.Wright says:

    Billie Moore N. A. Wright makes a good point, of course. Hard to document, in some cases, that the person died of ME/CFS causes. Nevertheless, the questionnaire has a question that will get close to it:without looking up the exact wording, something to the effect of – would the person with ME/CFS have died of whatever he or she did die of if the deceased had not had ME/CFS. I know of two cases – Eric being one – that the answers would definitely be NO. And I suspect that many others who show up in studies as the one by Dr. Dana March, cited above by Jenny, would not have died at the particular time they did die, and from the same causes, if they did not have ME/CFS. Eric was a true ME/CFS sufferer, by the most strict definition of ME – the ICC definition, and his suicide was driven by his total loss of life as others live life. Also of the lack of seeing any treatment coming along from any source. Depression had never been part of his life.

    Billie

    I want to avoid commenting on specific circumstances so this is a general observation only. What a person ‘dies of’ is not a simple conception, the CDC has a useful approach to the problems involved – http://www.cdc.gov/nchs/data/dvs/blue_form.pdf where ‘immediate cause’ and ‘underlying cause’ are presented separately along with further separation of contributory conditions. Without a definitive aetiology, which of course currently we don’t have for ME, it is really not possible to relate immediate cause to underlying cause other than by an observation of ‘correlation’ –and where the axiom “correlation does not imply causation” has to apply. I’m afraid it gives us a substantial negative in terms of understanding mortality in ME.

    Even with a strict diagnostic criteria for an underlying organic disease, the occurrence of a depressive state can’t be excluded in the immediate run up to someone ending their own life. In the UK a recent estimate suggested that 1 in 10 suicides were by people with serious chronic health conditions, it seems improbable that of those (statistical) 600 cases per year none would be suffering a co-morbid depressive condition, including acute onset immediately prior to their deaths. In the UK on merely statistical grounds we might expect a minimum of 25+ suicides per year amongst MECFS sufferers, and a 100+ in the US. This is of course a horrible way of looking at the issue but it helps place MECFS in the wider context. As I wrote previously, the key to understanding mortality in ME is to gain data about what happens to MECFS sufferers in later life, which is where shortened life expectancy is most likely to be evident. It is the absence of that data, that should cause organisations to be very conservative when making statements regarding death in ME.

  19. Sarah says:

    @Billie Moore
    I think people also lose sight of the fact that many of the roadblocks they put around saying such and such a person died from ME could just as easily apply to other illnesses which are routinely credited with having a part in someone’s death.

    My dad had MS. When he died it was from pneumonia, but MS also appeared on his death certificate, and no one questioned it. There’s no doubt that without the MS, he would have had a far smaller chance of contracting pneumonia in the first place, and a far greater chance of recovering from it. No one in a million years would question the inclusion of the disease on his death certificate: the myriad symptoms of MS (not least his lack of mobility, which hugely restricted the physios’ efforts to clear his lungs) were a huge contributory factor.

    In the same situation, with the same lack of mobility and an immune system and body run ragged and running out of resources to fight, I wonder if doctors would so readily admit CFS as a contributory factor or name it on a death certificate? And if not, why not?

  20. Sarah says:

    @Ron Graves
    I can offer nothing but empathy, but you have that a thousand fold.

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