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

[CBS]

* Before posting, please apprecaite that this is a public forum and you should assume that your comments are public and will be accessed by non-PR members for uses other than the constuctive discussion of this topic. And sorry about the red but I felt it important to get your attention.

I realize that I am treading into very sensative territory with this poll. In doing so, I would ask that everyone, inspite of any differences of opinion, treat each other with the care and respect you would hope to receive in your most vulnerable moments.

I am starting this poll because the P2P and IOM efforts are moving forward and there is scant acknowledgement of the overwhelming suggestion by two small projects (one published, Jason, 2006 and the other unpublished - CFI EPI project, Dana March, 2014 IACFSME conference) that suggest suicide could account for as many as one in five deaths in patiets diagnosed with ME/CFS. To put that into perspective, the suicide rates in various population subgroups range from 1-2%. The estimated rate of suicide amongst cancer patients is roughly 4%.

On a different thread, I pointed out that all the memebers of the IOM panel were doctors. My point was simply to suggest that while having many parellel goals, patients and doctors view ME/CFS/SEID from inherently different vantage points. Suicide is a topic that triggers intense emotion in everyone. However, the emotional response of a doctor is likely to derive from a sense of helplessness or even failure. For patients, I suspect that helplessness may also play a significant role but it is a different type of helplessness and failure may not be as prominent acomponent as anger over neglect and perceived indifference.

What I trying to explain is that I don't think that we can count on doctors to "go there" when it comes to suicide. For me this is also about seeking real help. The HHS provided $61 millions dollars for suicide and suicide prevevntion efforts in 2014. That is 12 times the $5 million dollars provided for ME and CFS. When I approached Dr.Beth Unger at the Stanford Symposium and asked if the CDC could simply count the deaths from CFS, she was clearly uncomfortable and said something about how difficult it would be (I think there was something in there about going to Mars) and then she made an abrupt and hasty exit. Later in the IACFS/ME, Dr. March presented the CFI Epi project data on causes of death with CDC officials in attendance. I have long felt that "we count what we care about."

If HHS won't fund ME or CFS research then maybe seeking help from the the larger pool of funding available for suicide/suicide prevention would be a more effective tactic.

These are my early thoughts on this topic. I'm probably ging to get some things wrong. Feel free to make suggestions (I prefer to get epecially nasty comments via PM).

Lastly, please do not focus on this thread if you are feeling suicidal. I would suggest seeking help. At the very least, seek comfort from a sensative and understanding friend or family member and know that you are not alone.

Thank you,

Shane

 

[SB_1108]

May I suggest another option... How about: "I've highly considered it in the past but was able to overcome the feeling." Or something along those lines.

 

[PennyIA]

I'll be honest, right now I'm raising a son... and when I have vague thoughts about it right now, it's all framed up in a "in the future it's something I might consider" kind of thing.

In the meantime, I'm managing when I can manage, and collapsing when that's not possible and just trying to survive long enough to figure out what my options really are.

 

[Sasha]

two small projects (one published, Jason, 2006 and the other unpublished - CFI EPI project, Dana March, 2014 IACFSME conference) that suggest suicide could account for as many as one in five deaths in patiets diagnosed with ME/CFS.

Hi Shane - interesting topic but there's a huge difference between the title of your thread (stating that as many as one in five ME/CFS patients kill themselves) and a finding that one in five ME/CFS patients who die, kill themselves.

Not a criticism - I just think it would be useful to clarify about the numbers before the discussion gets fully underway.

I think it's possible that many PWME don't get ME/CFS on their death certificate and that it's likely to be the severer cases that do - so there may be a huge underestimation of ME deaths and hence overestimation of the proportion of ME deaths that are suicides (because the denominator is artificially low).

 

[Dreambirdie]

Thanks for doing the poll @CBS

Vanessa Li's suicide has certainly brought this issue to the forefront.

 

[CBS]

May I suggest another option... How about: "I've highly considered it in the past but was able to overcome the feeling." Or something along those lines.

@SB_1108 - Thanks for the suggestion. I'd be interested to hear other's thoughts on this. I worded it the way I did because each element (ideation, plan, means) are all distinct indicators of escalating risk. My goal was not to assess present risk but to get a sense of the degree of risk at its highest level (very few people in the general population, even amongst those with depression actually develop a plan or obtain the means to carry out that plan).

Also, full disclosure, I was a collaborator on the CFI Epi project and co-author on the "co-mobid and consequent conditions" paper based upon the same study.

 

[minkeygirl]

About 2 years ago I bought a 700 page book (what was I thinking since I can't read?) about this.

I think for some people, myself included it is a viable option. I have no family or friends near by. Although I can manage in my home right now, if I ever get to the point where I can't and the only option is some state facility, then I would hope I have the courage to do this.

I have already spoken to the few people who would be affected by this and they totally understand.

I don't think anyone has the right to tell anyone what to do or not to do. At some point, when does it become too much? Who is to judge that?

@CBS I have thought about it, know some options and have my book so another option?

 

[CBS]

Hi Shane - interesting topic but there's a huge difference between the title of your thread (stating that as many as one in five ME/CFS patients kill themselves) and a finding that one in five ME/CFS patients who die, kill themselves.

Not a criticism - I just think it would be useful to clarify about the numbers before the discussion gets fully underway.

I think it's possible that many PWME don't get ME/CFS on their death certificate and that it's likely to be the severer cases that do - so there may be a huge underestimation of ME deaths and hence overestimation of the proportion of ME deaths that are suicides (because the denominator is artificially low).

Hi @Sasha - I'm not sure that I see what you're trying to point out. ME or CFS is, for all pracrical purposes,never listed as a cause of death on a death certificate. The CFI Epi project followed up with patients that had been seen in one of several CFS specialty clinics. Of the patients for whom we could verify as deceased, 19% had died by suicide according to a detailed follow-up interview by the specialist with a family member. While it may be difficult to know exactly how this translates to the larger population (not seen by a CFS specialist), this is probably as good an estimate of lifetime risk as we presently have (and it is consistent with the suicide rate reported by Dr. Jason).

Perhaps you could suggest an alternative title?

 

[MeSci]

I find it hard to answer this as it is worded. As with some other illnesses, relief of symptoms is not the only reason for considering or attempting suicide when one has ME. There are the knock-on effects - loss of career prospects, car, home, relationships, independence, dire poverty, etc., in addition to the symptoms. It was a combination of things like these that led to my suicide attempt.

EDIT - and of course the disbelief and rejection we get, as cited in the first message. It's not just the symptoms. It's commonly the abandonment we suffer on top.

 

[Gingergrrl]

(very few people in the general population, even amongst those with depression actually develop a plan or obtain the means to carry out that plan).

@CBS This is actually not true and the lifetime statistics for individuals with Major Depressive Disorder, Bipolar Disorder, and schizophrenia who both attempt and successfully commit suicide is very high.

I do not have the stats in front of me (and do not want to sidetrack your thread) but having worked on a suicide hotline for ten years, we gave presentations on these topics year round with solid statistics.

ETA: Shane, I want to clarify b/c don't think I worded this well. I didn't mean that what you wrote was not solid, I meant that the stats we worked with on the hotline were solid, and not just an assumption that I am making without evidence.

 

[CBS]

On a more personal note, I have had two periods of profound disability and pain. During the first period (1996), I became intensely suicidal as I watched my career disintegrate and could find no symtpomatic relief. At that point in time, the idea of never being free of from the pain was overwhelming and I developeda plan and obtianed the means. I also met several times with a medical psychologist to help me deal with the pain and feelings of helplessness. She insisted that I promise her that I would not kill myself while I was seeing her. That was unacceptible to me but I appreciated that many counselors will not see a patient who does not make this commitment. We finally agreed that I would contact her before killing myself but that I would retain the means to do so.

I was fortunate in that the intensity of some of my most distressing symptoms abated after several years. Not killing myself during that period was one of the hardest things I've ever done. A few years later during a period when my symptoms were far less intense, a very wonderful but foolish woman agreed to marry me. I had erroneously presumed that the worst of my ME was behind me. Together we have managed to get through some very difficult periods. One of the tools I've used to cope is knowing that by retaining the means to end my suffering, living with ME is a choice.

At the present time, a very agressive treatment plan is keeping my symtpoms at bay but I will always retain the right to end my suffering when it becomes more than I can bear.

 

[Sasha]

Hi @Sasha - I'm not sure that I see what you're trying to point out. ME or CFS is, for all pracrical purposes,never listed as a cause of death on a death certificate. The CFI Epi project followed up with patients that had been seen in one of several CFS specialty clinics. Of the patients for whom we could verify as deceased, 19% had died by suicide according to a detailed follow-up interview by the specialist with a family member. While it may be difficult to know exactly how this translates to the larger population (not seen by a CFS specialist), this is probably as good an estimate of life time risk as we presntly have (and it is consistent with the roughly suicide rate reported by Dr. Jason).

Perhaps you could suggest an alternative title?

Sorry, Shane, I don't think I was very clear!

Here are details of the CFI study (written by @searcher as an article on PR):

CFI Clinical Epidemiology Study
[...] This study looked at 1430 patients. Patients had to be 18+ years old and had to have been diagnosed more than five years earlier, with an emphasis on patients who had been seen for more than 10 years.

They received 960 completed surveys. Fifty-nine people in the sample were deceased.

As mentioned in our earlier reporting, a majority of the deceased patients were from Dr. Peterson’s clinic. The reason for this is likely because those patients go back the furthest, so it’s likely due to the fact that Dr. Peterson has been seeing patients since the Incline Village outbreak. Of these patients 37.8% died of cancer, which is 4 times the background rate of cancer. Another 19% died of heart disease and 19% more died of suicide.​

So the 19% figure is from a survey of 1430 patients, 930 of whom were followed up; most of the deceased patients were recruited from Dr Perterson's clinic (and I think, but I'm not sure, that others were from other speciality ME clinics). So this is likely to be patients at the more severe, chronic end. But that doesn't represent all ME patients: those who are less ill, and those who make a pretty good recovery aren't counted, and may have a far lower death rate than these patients. They need to be added into the denominator but we don't know their numbers.

I don't want to bog your thread down in this issue but maybe it would be better to insert 'severe' in front of 'CFS'. I think that would be more accurate. Your call, though!

 

[Nielk]

If these are from clinicians statistics, I would not call them "severe".

Severe patients are mostly bed bound and can't travel to doctors office. They are the "silent" 25%. They do not appear in studies not in any of the clinician statistics.

 

[CBS]

I'll be honest, right now I'm raising a son... and when I have vague thoughts about it right now, it's all framed up in a "in the future it's something I might consider" kind of thing.

In the meantime, I'm managing when I can manage, and collapsing when that's not possible and just trying to survive long enough to figure out what my options really are.

I don't have any kids (but I would make a great five year-old). I think for many of us, surviving is done by defining descrete chunks of time and aiming to get through them. Then reassessing and perhaps setting new goals. One of my greatest fears is that I will become too ill to end my suffering myself and that I would need to enlist someone else's help. I would never want to place someone else in that very legally vulerable position.

 

[Sherlock]

I'd suggest moving this to the Members Only forum. I'd also remind everyone that google probably knows who most of you are - and will store everything for a very, very long time. They build dossiers and use many underhanded means to do so.

@Kina @Sushi

 

[luludji]

I think about it, but not in a vague way. But I do not have a plan.
I don't like the sound of "vague", it is used (in my language, that is) to descripe out multiple symptoms, which are, as we know, not vague at all.
Can it not be altered in "I think/I have thought about it but do not have a concrete plan"?

 

[Scarecrow]

So the 19% figure is from a survey of 1430 patients, 930 of whom were followed up; most of the deceased patients were recruited from Dr Perterson's clinic (and I think, but I'm not sure, that others were from other speciality ME clinics). So this is likely to be patients at the more severe, chronic end. But that doesn't represent all ME patients: those who are less ill, and those who make a pretty good recovery aren't counted, and may have a far lower death rate than these patients. They need to be added into the denominator but we don't know their numbers.

So, it's true to say that out of the follow up group of 930 patients, 59 were deceased and 19% of those (i.e. 11 patients) had killed themselves.

@CBS We cannot know what the lifetime mortality from suicide is going to be from the group because 871 of them are still alive. It isn't legitimate to assume the rate is going to remain the same at all stages of life. Therefore it cannot be claimed that one in five patients kill themselves.

 

[CBS]

@CBS This is actually not true and the lifetime statistics for individuals with Major Depressive Disorder, Bipolar Disorder, and schizophrenia who both attempt and successfully commit suicide is very high.

I do not have the stats in front of me (and do not want to sidetrack your thread) but having worked on a suicide hotline for ten years, we gave presentations on these topics year round with solid statistics.

ETA: Shane, I want to clarify b/c don't think I worded this well. I didn't mean that what you wrote was not solid, I meant that the stats we worked with on the hotline were solid, and not just an assumption that I am making without evidence.

@Gingergrrl - Thanks for pointing out that patients with Major Depressive Disorder, Bipolar Disorder and Schizophrenia are at significantly elevated rsk. I too do not have stats for those conditions in front of me at present. I referred to "those with depression" intending to include a range of depressed patients but deliberately did not include those with MDD, a very high risk group

What I do know is that as I looked through HHS expenditures in 2014 on suicide and suicide prevention, all three of the disorders you mention were recipients of numerous grants while there was not a single grant to look at any aspect of suicide and ME or CFS.

 

[LaurelW]

I remember recently seeing a webcast, I think it was the P2P, where a researcher said that she was doing a study on ME suicides. She said she knows it's an uncomfortable subject, but it needs to be done. I wholeheartedly agree. Does anyone remember who she is and where she's doing the study?

 

[Sasha]

If these are from clinicians statistics, I would not call them "severe".

Severe patients are mostly bed bound and can't travel to doctors office. They are the "silent" 25%. They do not appear in studies not in any of the clinician statistics.

I agree the most severe will probably never see a specialist but many pretty severe patients may yet still be in that bed/housebound 25% and yet still making it to a clinic. I was confined to bed during my first illness and couldn't even cut up my own food and yet my parents loaded me into the back seat of their car where I lay down while they drove me out of town to a specialist clinic, where I lay on a couch throughout the appointment.