Poll: Suicide - as many as one in five CFS patients kill themselves

[Undisclosed]

There's this one...

http://www.ncf-net.org/memorial.htm

Thanks @CantThink That's the site I was trying to remember.

 

[MeSci]

Sorry to be so dryly analytical in a delicate subject like this. Sometimes I think that logic is the only remaining part of my brain working.

As @CBS alluded to in this post, after many years with ME/CFS, patients may not think so much about the loss of career and other aspects of their life. When I first developed ME/CFS, I was furiously angry at the loss of many aspects of my life. But now after 10 years, and in the haze of ME/CFS, I've kind of forgotten what it is that I am missing.

Do other people who have had ME/CFS a while concur, or is anger about the things you are missing still prominent?

I like logical discussions, and I think you made a good analysis in your post.

I don't think I am less angry than before on the whole, but I keep it under control. If I allowed myself to, I would be like a volcano erupting at the injustice suffered by ME patients around the world, especially those who are suffering the most.

At first I wasn't so much angry as bewildered, lost and despairing. I didn't know what was wrong so didn't blame anyone else for not knowing. I was angry with friends and family for not being supportive, believing or understanding my desperate situation.

For years I just thought that the ignorance around this illness - which I had by then demanded and got a diagnosis for - was no one's fault - just widespread ignorance and incompetence.

It was relatively recently that I found about Wessely and co and the way that powerful people had colluded in keeping us in this dire situation. Then I became REALLY angry.

But anger can eat you up and cause damage to others too, and I have to keep it suppressed, not in a way that allows it to fester, but just file it away while I use my limited energy for essential and important things. I know that the anger is there if I ever need it...

 

[MeSci]

There's this one...

http://www.ncf-net.org/memorial.htm

So many...

 

[CBS]

and I'm not really clear on the duration of the study period. Was it the same for all subjects? Can we say x number/percentage of subjects suicided over the course of y number of years? Obviously, the longer the duration of the study, the more deaths there will be and therefore more suicides.

There really isn’t a study period, there was a one time follow-up contact. Data was collected from patients who had been diagnosed with CFS no more recently than 8 years ago (ideally no less than 10 years ago). Some patients had been diagnosed at the study clinic as long as 25+ years before we attempted to contact them. Patients were selected in a stratified (by years since first Dx with CFS) random sampling, designed to pull equally from the pool of patients seen 10 years ago or longer (see the paper linked to below for details - there were a few minor exceptions)

Some patients were only seen once by the site PI (at the time of diagnosis) and some have been seen several times a year for decades (many had not had contact with the clinic for several years at the time the follow-up was conducted).

I would suspect that patients at these clinics are likely to have been moderately ill and worse at the time of diagnosis. More than anything, I suspect that what these patients have in common is resources (money, family, spouses with good paying jobs, good insurance plans, etc.)

I think that the appropriate way to frame the results is to say that "of the patients who had been diagnosed with CFS at these clinics (patients with resources) during the period described above (between 10 and 25+ years ago) and who had died since being diagnosed with CFS, 20% had committed suicide."

So what do these patients look like? For a general idea of the demographics, education, etc., I would refer you to the CFI EPI study paper Chronic fatigue syndrome and co-morbid and consequent conditions: evidence from a multi-site clinical epidemiology study. Lucinda Bateman, et al., 2014 - http://www.tandfonline.com/doi/abs/10.1080/21641846.2014.978109#.VISPUeF87CK

And lastly, are the patients who died (and more specifically, those who committed suicide) different than those who were alive and who completed the survey? The clear answer to this question is that yes, there are likely some difference (after all, they are dead). Were they different when they were alive. I don’t know and I’d like to provide you with additional information about the sub-sample of deceased patients but 1) the sample is small and inferring too much is at best difficult and at worst, fraught with peril and 2) the CFI Epi project has not been published and I’m not at liberty to share any further details. I know this is unsatisfactory but the larger point that needs to be made is that we need more information about suicide in ME and CFS.

We deserve the time and attention of the CDC and if they aren’t going to give it to us to study immunology or infectious disease then they damn well better be prepared to investigate what is killing us and whether or not it is accurate to generalize across the entire population the results of Jason et al, 2006 and the CFI Epi project, both of which found a suicide rate amongst deceased patients of roughly One in Five!

 

[MeSci]

So what do these patients look like? For a general idea of the demographics, education, etc., I would refer you to the CFI EPI study paper Chronic fatigue syndrome and co-morbid and consequent conditions: evidence from a multi-site clinical epidemiology study. Lucinda Bateman, et al., 2014 - http://www.tandfonline.com/doi/abs/10.1080/21641846.2014.978109#.VISPUeF87CK

Thanks for the additional info, @CBS. I agree that more research would be useful re this issue. I note from the study cited above that they say:

Nearly 60% of the sample reported a mental illness.

I think that this indicates two confounding issues:

1. The diagnostic criteria may be too broad, thus picking up a disproportionate number of people with primary depression rather than ME/SEID.
2. The anxiety found in ME/SEID seems to be notably amenable to treatment via diet and supplements, and thus may in fact be due to biochemical imbalances due to dietary issues rather than life events, emotional susceptibility, etc., although I'm not sure that we can really draw a clear line between mental and physical illness, as @alex3619 has suggested, e.g. in this post.

 

[alex3619]

Certainly it likely does vary a great deal from person to person.

(1) The first category would be directly painful or torturous symptoms. This would include the severe migraines that @CBS mentions, severe depression, severe physical pain, or any other mental or physical symptom that causes intense, direct and immediate suffering.

(2) A second category might the lack of the normal things that a human being requires in their life, such as friends, a help/support system, housing, money, a satifying job (or similar role that helps maintain self esteem), etc.

(3) And a third category might be impending or future stressful circumstances, which cause a lot of worry when you mentally try to deal with them. For example, if you have to face the impending loss of your home, and have to do this in the context of having ME/CFS and thus a limited ability to cope, the very thought of this impending event might make you think of suicide as a way out.


Sometimes I think that logic is the only remaining part of my brain working.

As @CBS alluded to in this post, after many years with ME/CFS, patients may not think so much about the loss of career and other aspects of their life. When I first developed ME/CFS, I was furiously angry at the loss of many aspects of my life. But now after 10 years, and in the haze of ME/CFS, I've kind of forgotten what it is that I am missing.

Do other people who have had ME/CFS a while concur, or is anger about the things you are missing still prominent?

Logic is sometimes the only thing working for me too. Even language can go, but I can still reason, though not as well.

So far I have not had huge issues from category 1. Sure things were bad, even severe continuous untreatable pain for more than a decade, but I persevered. Its possible that things like this might become more than I can handle, but only in conjunction with categories 2 and 3. No hope, unmet needs, severe distress and pain .. these could be problems in combination.

Category 2 is the big one for me. Some few things in this category are the only things that can get me depressed. I might discuss what but dwelling on it might get me depressed (reactive depression), so I wont.

Category 3 is a potential concern. Its a distant maybe. Its not about the worry though, for me its about lack of options, or capacity to use options, much more than worry. So its not about possible stressful events, but rather events that are very difficult to cope with for more reasons than just stress.

I do forgot most of what my life was like or could have been. These issues do not, generally, get to me, with the exception I didn't quite mention previously.

 

[alex3619]

The diagnostic criteria may be too broad, thus picking up a disproportionate number of people with primary depression rather than ME/SEID.

I bet if you ruled out including ME or SEID symptoms nearly all "mental illness" would vanish. Some of us would remain.

However if I extend this to psych diagnoses, if they could figure out all that is physically wrong with people then the same thing would happen ... most of their diagnoses would vanish.

 

[xks201]

So many enzymes can fail to properly function in the body to cause mental illness. How someone differentiates a psychosomatic illness from a somatic illness in this age of ignorance of genetics is beyond me. People are diagnosed as insane without their thyroid levels even being checked. If they are lucky maybe they get a TSH test. The asinine medicine that goes on in private and public facilities is like a contagious disease in itself contaminating the entire population with false diagnosis and ignorance. They don't teach medicine like they used to apparently.

 

[Misfit Toy]

Category 1....that's what I am in. Severe pain and symptoms. I think about how it would be to not have pain and suffering every day. This last migraine was too much. Unreal. It's still hanging on.

I've never had a plan but I think about it. I am too scared I would fail.

I believe in Dying with Dignity and Compassionate Choices and that people should be able to follow through with Euthanasia. I don't think people should have to be dying (as in with cancer either.) If people are suffering with horrible never ending pain, depression, etc...I think they should be able to die and choose it on their terms and not to have to do it in a way that is horrible.

Dogs are given more compassion than humans. Dogs are put down for some of the smallest things when they are suffering. If a horse has been hurt and is in horrible pain, you see movies where the horse is shot and killed. It's not fair to keep the horse suffering.

People..people go through horrible mind boggling things. Chemical explosions, car accidents where they will never recover and then they are tortured because they are addicted to pain meds...watch the movie, "CAKE." Intolerable pain. All kinds of things and yet we are supposed to live under the worst conditions. It's not right. Whenever I go to my pain doctor, I am blown away by the patients I see in there. They are in excruciating pain. I can see it. It's horrible. And yet people are expected by society to have a stiff upper lip and put a smile on their face. But..a dog...a dog in horrible pain, we feel sorry for and many can't stand to see it and they have it put down.

And this disease and what it does...need I say more?

 

[Kati]

Category 1....that's what I am in. Severe pain and symptoms. I think about how it would be to not have pain and suffering every day. This last migraine was too much. Unreal. It's still hanging on.

Sorry about that @Misfit Toy, I hope you can sleep some of the migraine out.
Best wishes.