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

[CBS]

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.

We have two small studies with reasonably close percentages of suicide amongst those who could be confirmed as dead. You are right to say that we that we don't know what the rates may be for the remaining patients (actually 960 completed follow-up surveys, a small percentage refused to participate, I think it was under 30 or so, and the remaining 300+ were lost to follow-up after extensive efforts including searches of the Federal Death Registries - based upon state medical examiner reports - and no other disposition could be achieved) who are alive.

There may be patients who have hung on waiting for something to happen and then lose hope when project X or Y fails to come through. Someday soon there may be a biomarker that points to a cure for some or all patients. At present, all we have to go on are past events and of the deaths that were confirmed, roughly 1in 5 patients from those co-horts had committed suicide. The title was deliberately worded "As many as..."

 

[CBS]

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

Not quite sure how I feel about this. I get that the topic is sensative but there are many members who skim recent posts without logging in. They would miss what I feel is an important topic. I guess I'll leave this in the hands of forum administrators. And YES, know that whatever you may post becomes public information (and that data mining is a powerful tooll).

 

[Gingergrrl]

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.

@CBS I fully agree with you and ME/CFS is not receiving HHS money for biomedical research or studies of suicide rates or anything that would help our population compared to other illnesses. My comment was not in regard to funding, just in regard to the fact that psychiatric disorders also have a very high suicide rate and I didn't want this to be downplayed.

For myself, although I have had many moments of complete despair due to this illness, what keeps me going is my husband, my family and friends who believe in me and support me. As well as my hope that some day the scientists and doctors will find better treatments and maybe even a cure. This may be naive but it keeps me going.

 

[alex3619]

I have not considered suicide in the usual sense. I do however consider that if things got bad enough suicide is an option. I am just not there yet. So I have considered it an abstract way. As a rationalist I consider everything important, but this does not mean I endorse what I consider. That is part of the analysis.

Leonard Jason's old study put suicide at around 20%. So this is consistent.

There was an old survey in Victoria, Australia, published by the state society maybe a decade and a half ago, using a CFS diagnosis. In it one in ten patients had actually attempted suicide, and this rose to one in six for long term patients. Note these were the survivors.

Major depression suicide rates are lower. If this is a bad disorder due to risk of suicide (I am not counting the anguish etc., but what the bureaucrats might consider the major problem) then ME is worse.

By these accounts the suicide risk is much higher than major depression. This no trivial matter. A large issue here is the total failure of most of psychiatry to come to grips with this, and how badly they have ostracized our community, mean that we are much less likely to seek help.

There is not enough research on this. There is a failure of care by the health bureaucrats, the medical profession in general, and psychiatrists in particular. Some do understand, and have a grip on what is going on, such as perhaps Leonard Jason (a psychologist?), but they are the exception.

Ironically I think treating us for depression, successfully, would increase our suicide risk. This is not, in my opinion, for the most part, about depression. Its about impossible circumstances and people facing a slow death or a death on their terms. Its more like euthanasia than suicide.

I do have an advanced health directive that, in dire circumstances (it does not kick in otherwise), forbids resuscitation by doctors.

 

[CBS]

@CBS I fully agree with you and ME/CFS is not receiving HHS money for biomedical research or studies of suicide rates or anything that would help our population compared to other illnesses. My comment was not in regard to funding, just in regard to the fact that psychiatric disorders also have a very high suicide rate and I didn't want this to be downplayed.

For myself, although I have had many moments of complete despair due to this illness, what keeps me going is my husband, my family and friends who believe in me and support me. As well as my hope that some day the scientists and doctors will find better treatments and maybe even a cure. This may be naive but it keeps me going.

I'd be very interested in a study on predictors of suicide risk within the ME and CFS communities. I suspect that a study designed soley for that purpose would be likely to give us more reliable data on the overall rates of suicide.

 

[PennyIA]

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.

Yes, I spent the trip to Mayo Clinic in 2006 prone in the car trying to cover my face... and getting wheeled around in a wheelchair, but having to lie down when I would arrive at any appointment (or they would have vomit to clean up as my OI -- not that I knew it at the time -- was so severe I couldn't be upright).

 

[Sherlock]

Not quite sure how I feel about this. I get that the topic is sensative but there are many members who skim recent posts without logging in. They would miss what I feel is an important topic. I guess I'll leave this in the hands of forum administrators. And YES, know that whatever you may post becomes public information (and that data mining is a powerful tooll).

I understand you, CBS. Maybe put a privacy warning at the top? How many here know that google has reportedly SOLD out its users for big money on at least one occasion so far? That google knows every single time that people here visit a page? That no one can say that only google will ever hold that info - as if that isn't bad enough in itself.

Some here might feel that they have a place to open up and find some comfort, but forget that the immediate response from authorities is to lock people up. Plus, there is a very large opportunity for critics to put the cart before the horse and come up with... uncharitable conclusions about people here.

Maybe a technical solution? Have a public post saying "go to the such-and-such forum and read the such-and-such topic". (Merely linking might just lead the bots there.)

 

[priya]

i think the Q:
'Have you ever considered suicide FOR RELIEF FROM your ME or CFS symptoms?'
only provides one piece of the puzzle. i'm bed-ridden 100% for 12.5 years, cannot be lifted, put in a wheel-chair, etc. BUT if i were to contemplate ending my life it would be because i have petitioned every gov agency + when i'm out of a residence this calendar year, there is absolutely no place for me to go.i don't have resources to pay for my own apartment and a live-in carer. i can't live on the street -- i need carers and i'm in an electric hospital bed. politicians know it, friends and family know it, but there's no solution.

it's not the symptoms of the illness, but the very practical Q of 'where am i supposed to put this living body?'

 

[CBS]

i think the Q:
'Have you ever considered suicide FOR RELIEF FROM your ME or CFS symptoms?'
only provides one piece of the puzzle. i'm bed-ridden 100% for 12.5 years, cannot be lifted, put in a wheel-chair, etc. BUT if i were to contemplate ending my life it would be because i have petitioned every gov agency + when i'm out of a residence this calendar year, there is absolutely no place for me to go.i don't have resources to pay for my own apartment and a live-in carer. i can't live on the street -- i need carers and i'm in an electric hospital bed. politicians know it, friends and family know it, but there's no solution.

it's not the symptoms of the illness, but the very practical Q of 'where am i supposed to put this living body?'

@priya - Reading your post was sobering. Thank you for the reminder that many of the least visible patients are dealing with such harsh and fundamental realities.

 

[CBS]

I have not considered suicide in the usual sense. I do however consider that if things got bad enough suicide is an option. I am just not there yet. So I have considered it an abstract way. As a rationalist I consider everything important, but this does not mean I endorse what I consider. That is part of the analysis.

<snip>

By these accounts the suicide risk is much higher than major depression. This no trivial matter. A large issue here is the total failure of most of psychiatry to come to grips with this, and how badly they have ostracized our community, mean that we are much less likely to seek help.

There is not enough research on this. There is a failure of care by the health bureaucrats, the medical profession in general, and psychiatrists in particular. Some do understand, and have a grip on what is going on, such as perhaps Leonard Jason (a psychologist?), but they are the exception.

Ironically I think treating us for depression, successfully, would increase our suicide risk. This is not, in my opinion, for the most part, about depression. Its about impossible circumstances and people facing a slow death or a death on their terms. Its more like euthanasia than suicide.

I do have an advanced health directive that, in dire circumstances (it does not kick in otherwise), forbids resuscitation by doctors.

I too think of this for myself as euthanasia. I'm not convinced that main stream psychiatry has anything of substance to offer us. Personal decisions ought to be respected and without substantial evidence to the contrary, the assumption should be that the person made a rational decision.

I hesitated to place the suicide prevention information in my signature but felt that doing so was prudent. It is fairly well documented that copycat suicides do occur (I'm not aware of evidence that the discussion of suidice as a general topic increases suicide). I'm skeptical that many long term patients would make use of this service.

I too have an advanced directive and would encourage others to consider doing the same.

 

[Gingergrrl]

I hesitated to place the suicide prevention information in my signature but felt that doing so was prudent.

@CBS I am glad that you put it there and you never know who may copy down the number or use it at a future point. What you put is a national line (in the U.S.) that patches through to the closest local line for the area dialed, but there are also local lines that can be called directly for a specific area as well.

 

[Gingergrrl]

i think the Q:
'Have you ever considered suicide FOR RELIEF FROM your ME or CFS symptoms?'
only provides one piece of the puzzle. i'm bed-ridden 100% for 12.5 years, cannot be lifted, put in a wheel-chair, etc. BUT if i were to contemplate ending my life it would be because i have petitioned every gov agency + when i'm out of a residence this calendar year, there is absolutely no place for me to go.i don't have resources to pay for my own apartment and a live-in carer. i can't live on the street -- i need carers and i'm in an electric hospital bed. politicians know it, friends and family know it, but there's no solution.

it's not the symptoms of the illness, but the very practical Q of 'where am i supposed to put this living body?'

@priya I "liked" your post because I wanted to acknowledge your incredible suffering and not b/c I liked what you said. I was trying to think of possible resources and then realized that you are in a different country so I have no idea how to proceed. I have no doubt that you are petitioning every govt agency as you said and I wish you continued strength and courage in that journey.

 

[SDSue]

i think the Q:
'Have you ever considered suicide FOR RELIEF FROM your ME or CFS symptoms?'
only provides one piece of the puzzle. i'm bed-ridden 100% for 12.5 years, cannot be lifted, put in a wheel-chair, etc. BUT if i were to contemplate ending my life it would be because i have petitioned every gov agency + when i'm out of a residence this calendar year, there is absolutely no place for me to go.i don't have resources to pay for my own apartment and a live-in carer. i can't live on the street -- i need carers and i'm in an electric hospital bed. politicians know it, friends and family know it, but there's no solution.

it's not the symptoms of the illness, but the very practical Q of 'where am i supposed to put this living body?'

I dream of the day when you and the other profoundly affected patients will no longer have to ask such a horrific question. I am sorry that you have suffered so deeply. Thanks so much for your precious input.

 

[Tammy]

One ofmy greatest fears is that I will become too illtoendmy 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.

You should never have to be in that position..............and this is just one of the many reasons I STRONGLY support physician assisted means for dying with dignity and a very big supporter of the compassion and choices organization. I have a plan if I ever get to that point.

 

[CBS]

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.

Unfortunately, you can't edit the question in a PR poll once it has been posted (everyone who has responded would need an opportunity to reconsider their response), you can only add new responses. Otherwise, I would modify the question to read "Have you ever considerd suicide for relief from your ME or CFS or consequent conditions/circumstances?"

Is this an improvement? Any suggestions? Anyone?

Thanks again for your thoughts.

 

[lansbergen]

I had a plan and the means but did not use it because the immune modulator helped enough to endure it

 

[snowathlete]

@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.

I agree with @SB_1108 : I seriously explored suicide as an option in the past, but then made a definite decision not to. I had the idea, I had the means, I had thought about how, but if I tick one of those the poll makes it look like that's current and you would wrongly conclude elevated risk from the poll, when it is actually absent. So unless you broaden the options I cant take part.

 

[Gingergrrl]

Maybe the poll can say "I have had a plan in the past" etc versus "I have a plan" which makes it sound as if there is current, active ideation and intent. Just a suggestion!

 

[SOC]

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.

Same here. When I was still bedbound, I rode in the back of our van (laying down the whole time) in order to see a top specialist. I was wheelchaired in and out of the hotel and the clinic. It was a miserable experience every time, but well worth it because I got the treatment that moved me from bedbound to housebound to working full-time (not easily, mind you).

I've seen patients brought into my ME/CFS specialists' offices on stretchers. I've seen people much more disabled than I was in my specialists' offices. From conversations in the waiting rooms, I can attest that the majority of patients were at least housebound when they first started seeing the specialist. So while I'm sure very many of the bed/housebound 25% don't get in to see a specialist, the number who do is not minuscule. Based on my experience in specialists offices, I would have thought the bed/housebound portion of the patients population was much larger than 25%... but I probably didn't see the majority group of mild patients who don't pay to see a specialist.

 

[Hip]

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.

Sasha is absolutely right. The title of this thread, stating that 1 in 5 ME/CFS patients commit suicide, is completely wrong and grossly misleading.

The title needs to be edited and corrected (which can be done using the "thread tools" at the top right of the page).