DePaul/Jason, McManimen et al: Mortality in patients with ME and CFS

[mango]

Mortality in patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

McManimen, S. L., Devendorf, A. R., Brown, A. A., Moore, B. C., Moore, J. H., & Jason, L. A.

Fatigue: Biomedicine, Health & Behavior. Published online Oct. 12, 2016
doi: 10.1080/21641846.2016.1236588

ABSTRACT

Background:
There is a dearth of research examining mortality in individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Some studies suggest there is an elevated risk of suicide and earlier mortality compared to national norms. However, findings are inconsistent.

Objective:
This study sought to determine if patients are reportedly dying earlier than the overall population from the same cause.

Methods:
Family, friends, and caregivers of deceased patients were recruited. This study analyzed data including cause and age of death for 56 individuals. Results: The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower age of death for suicide (M = 41.3 years) and cancer (M = 66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age].

Conclusions:
Results suggest there is an increase in risk for earlier mortality in patients. Due to sample size and over-representation of severely ill patients, the findings should be replicated to determine if the directional differences for suicide and cancer mortality are significantly different from the overall population.

https://www.facebook.com/leonard.jason.12/posts/10208864975474673

ETA: Available online now:
http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1236588

 

[taniaaust1]

Nearly all the ones with ME/CFS Ive known over the years to die, I can say that only one of those was old, everyone else died far too young so I can easily believe studies like this.

 

[Marky90]

Makes sense. If we`re exhausted, the body probably is worse off.

 

[Cheesus]

This is painfully belieavable. Even if the ME doesn't do anything directly to cause early death - which seems unlikely - we're dealing with the indirect yet highly significant effects of chronic inactivity.

 

[Marky90]

This is painfully belieavable. Even if the ME doesn't do anything directly to cause early death - which seems unlikely - we're dealing with the indirect yet highly significant effects of chronic inactivity.

I would presume the effects of long exposure to the disease mechanism itself, is what might wear and tear though.

 

[AndyPR]

Can't speak for anybody else but my heart is working harder for longer than an average person so the chances of it giving out earlier than normal must be pretty high.

 

[RogerBlack]

I agree it sounds plausible, I just wish it was possible to have a better selected sample than this.
'selected using postings on social media, caregivers websites, ...'.

Several problems occur with this - older caregivers are less likely to be online, people with CFS who die at the expected age are going to be underreported because the caregivers are not going post 'my dad died at exactly the same age as his brother without CFS'.
Older caregivers are - perhaps - more likely to not remain part of the online community and be uncontactable later.

I guess you'd need ideally to find somewhere with online patient records available after death, a reasonable diagnosis rate for CFS (even in the elderly), for decent results.
You'd then need to investigate a sample of the 'CFS' patients in this database who are not dead and see how likely the diagnosis was to be good.

 

[Marky90]

Important points Roger, I don`t think the real mortality is as grim as this one indicates at all.

 

[Dolphin]

From Twitter, for what it is worth:

https://twitter.com/i/web/status/786243665244987392

https://twitter.com/i/web/status/786244048986120193

https://twitter.com/i/web/status/786246200970260480

https://twitter.com/i/web/status/786248656173211648

 

[Richard7]

I think it is expected.

As I understand it being disabled means you have a shorter life expectancy and being poor means that you have a shorter life expectancy. Each conditoion makes it easier for things to go wrong and harder for things to go right, and the former makes the latter more likely, of course.

 

[leela]

Lenny just never stops pulling for us. He is a prince. What an important topic.

 

[alex3619]

This is very much the same result as his earlier study. Its important to realize this probably cannot be generalized to a broader ME or CFS population, as the risk it has a sample bias toward the more severely ill is a valid one. However this would also imply that severe ME is more likely to result in increased mortality. So for mild ME or more general CFS this is probably not valid, but its good justification for a proper epidemiological study into more severe ME. Komaroff has been trying to get funding for that, dating back to the 80s.

 

[RogerBlack]

I question if for severely ill people years are the appropriate metric.

I am likely to exist for another three to five decades, depending on assumptions.

If I was cured of ME/CFS and given 5 years to live, it would arguably in many ways equate.

The commonly used metric is 'quality adjusted life years' - I am unsure how this formal approach (if indeed there is but one) would rate someone who can do desired tasks on average of 1/30th or so of normal speed, and struggles with self-care would assess lifespan.

 

[Cinders66]

The narrative in U.K. Is there is no increased mortality. I never thought that realistic and felt that buried within the CFS umbrella was likely a moderate /severe ME group who surely would have. This research adds to that weight although it's probably not the ideal study. With the inactivity of the average healthy couch potato supposed to be as dangerous as smoking, I couldn't see how the severe who are not only mor e inactive but dealing with having a very sick body, couldn't be at higher risk of getting other disease. Plus of course there's increased suicide risk, you should hear some of the struggles voiced on severe ME forums.

Severe ME and entrenched moderate ME needs to stop being marginalised or buried in the "most improve over time" narrative. We have a group as deserving as people with severe MS, and there's millions of bucks going into severe MS, being told that they're too unrepresentative, too difficult to reach, too expensive to study, not worthy of effort, or must wait at the back of The queue because they are the minority. It's disgraceful when the burden of illness is so high and quality of life so low. Is there anywhere in the world now that can claim to have good severe ME inpatient care( I don't mean rehabilitation centres) ? , that's just a basic and there's no capaigns for it because it doesn't benefit the mild & moderate. Maybe Australia. Anyway I thank Jason for shining a light on this Important area.

 

[Effi]

Full paper now available:

This version of the paper can be circulated.
Lenny
https://docs.google.com/document/d/1mVYQG_PHTaKTC9W0vLvM99zTrHCWo-QSVuIvGIq_yRc/edit

 

[Sing]

A good mortality study would be very useful in showing how serious this illness is, as well as show more about the kinds of harm it does, specifically.

The mean age for death from cardiovascular causes is19 years earlier than in the general population. For suicide it is 6 years younger and for cancer it is 4--also in terms of averages. To me there is no more excuse for the absence of research into the cardiovascular complications of ME or CFS, in particular. Dr. Richardson from Newcastle-upon-Tyne, decades back, and Dr. Cheney in more recent years, have tried to draw attention to the serious heart problems that are apt to develop.

It is worthwhile to read the entire paper--much more to it than just the abstract summary.

 

[alex3619]

The commonly used metric is 'quality adjusted life years'

The problem with this is that there is an adjustment factor that is basically a hunch, or at least that is what used to happen. CFS had a low impact factor when I looked into this some years ago, even though its rated in the top several most disabling diseases by independent rankings. This is made even worse if you consider that ME, which is not tracked, gives even worse disability than CFS. Something like the QALY is needed, but it needs to be more rigorous ... unless of course in the last few years this issue has been addressed, I have not kept up with this.

 

[alex3619]

Severe ME and entrenched moderate ME needs to stop being marginalised or buried in the "most improve over time" narrative.

Most do improve over time I think, but it has the caveats that a large percentage also relapse, fluctuations mean improvement can be followed by decline, and improvement is not recovery. Indeed I think the David Bell estimate that only 5% of patients fully recover, when you take relapses into account, is probably about the right figure. The problem is that CFS and ME are dismissed, and often denied, and that this allows a very permissive use of "improve" in which the caveats are rarely discussed. I am sensing a pattern here, this is how psychobabble operates as well, as exemplified by CBT/GET research for CFS and ME.

 

[Cinders66]

Most do improve over time I think, but it has the caveats that a large percentage also relapse, fluctuations mean improvement can be followed by decline, and improvement is not recovery. Indeed I think the David Bell estimate that only 5% of patients fully recover, when you take relapses into account, is probably about the right figure. The problem is that CFS and ME are dismissed, and often denied, and that this allows a very permissive use of "improve" in which the caveats are rarely discussed. I am sensing a pattern here, this is how psychobabble operates as well, as exemplified by CBT/GET research for CFS and ME.

As you say the response across the spectrum is very varied , improved could suggest to many healthy people a big step up towards normality whereas it's often not and many longer term severe are lucky to go from the very severe to severe or the severe to moderate, 1grade up and that can take many many years. As you say for many who do improve it's not a steady trajectory and they can rise then fall. If CFS is understimated in effect, as it usually is By the public, hearing most improve sounds almost an all swell that ends well illness story.
The improve over time sound bite that gets crammed into a two minute summary and the interviews we see reported and the websites sumnarys doesn't convey how long that "time" might be, how smally they might improve and still stay very disabled, how they can be very up and down in progress and that the severe (unless rapid onset severe who can do quite well) have much worse prognosis and horrific life circumstances sometimes. .

Edit I'd just like to hold my hands up to the appalling misuse of the English language with the word smally, instead of the word little etc. Very tired brain .

 

[Little Bluestem]

Due to sample size and over-representation of severely ill patients

Doesn't severe illness usually precede death?

What does "directionally lower age of death" mean?