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

[Hip]

@Hip - I apprecaite that you have strong feelings about this. I do hope that you can appreciate that my intent is not to mischaracterize ME or CFS patients but to gain insight into a very difficult and important subject that can be controversial, I've responded to other's including @Sasha via PM and I'm afraid that we may simply disagree about the "one in five" characterization. See posts by @alex3619 and my resposne to @Scarecrow above. Shane

It's great to bring such a difficult and controversial subject into the open, and into frank discussion. I am all for it. And am very interested in it.

I just feel that making a bold headline statement that "one in five CFS patients kill themselves", when really there is no reliable data that shows this, may only serve to sensationalize the subject.

Note that in the study that you cited, Jason 2006, he mentions that:

Joyce, Hotopf, and Wessely (1997) reported that among 2,075 people followed up in 19 published outcome studies of prolonged fatigue and CFS, there was one death by suicide and two unrelated deaths.

In a more recent review, Cairns and Hotopf (2005) found eight reported deaths in 12 studies.

So the suicide figures from these studies are greatly at odds with the figure of 1 in 5 ME/CFS patients committing suicide.

Also, just from our knowledge of the ME/CFS community, if 1 in 5 patients were committing suicide, then you might expect we would all hear of these suicides all the time. In the many years that I have been on this forum and communicating online with other ME/CFS patients, I have only heard of one story of ME/CFS patient suicide. So my own personal experience does not bear out this 1 in 5 figure.

I wonder if suicidal ideation is higher than in the general population, but actual death by suicide is not?

That is a very interesting distinction.

 

[CBS]

<snip>
I just feel that making a bold headline statement that "one in five CFS patients kill themselves", when really there is no reliable data that shows this, may only serve to sensationalize the subject.
<snip>

You repeatedly omit the entire title
"As many as onein five CFS patients kill themselves"

And for what it is worth, I am far more confident in the efforts of Jason and those of the CFI project than those of Wessley. The one in five is an alarming number and while MORE RESEARCH NEEDS TO BE DONE, there is well executed support for it.

As for what is posted on PR, it seems to me that you may be making the same mistake that doctors make when CFS patients don't come back and the doc assumes they were right about the condition just being stress when in fact the patient went in search of someone who could help. The absence of severely ill bedbound patinets posting on PR in no way suggests they don't exist. They are often just too sick to have the luxury of spending dwindling resourse here.

Thousands of patients no longer post here. Why? I suspect that we only learn of a fraction who have actually died.

 

[Hip]

Regarding the incidence of suicidal ideation among ME/CFS patients, which this poll is trying to uncover, one issue is whether that suicidal ideation derives from the physical and mental symptoms of ME/CFS, or from the physical and mental symptoms of any comorbid conditions a ME/CFS patient may have.

Psychiatric comorbidities such as anxiety and depression are common in ME/CFS (this recent poll of PR members found depression was present in around 29%), so then this raises the question: of those ME/CFS patients who have suicidal ideation to some degree, does that arise from the ME/CFS symptoms, or from their other psychiatric comorbidities?

In my own case, I went through many years of intense, constant suicidal ideation, but I am fairly sure this arose from the severe anhedonia and blunted affect psychiatric comorbidities I had alongside my ME/CFS. Suicidal ideation frequently appears in anhedonia. Now that the anhedonia is much improved, my suicidal ideation is significantly less (but still appears now and then).

Of course, it may not be easy for an individual to work out the source of their suicidal ideation.

 

[CBS]

Regarding the incidence of suicidal ideation among ME/CFS, which this poll is trying to uncover, one issue is whether that suicidal ideation derives from the physical and mental symptoms of ME/CFS, or from the physical and mental symptoms of any comorbid conditions a ME/CFS patient may have.

Psychiatric comorbidities such as anxiety and depression are common in ME/CFS (this recent poll of PR members found depression was present in around 29%), so then this raises the question: of those ME/CFS patients who have suicidal ideation to some degree, does that arise from the ME/CFS symptoms, or from their other psychiatric comorbidities?

In my own case, I went through many years of intense, constant suicidal ideation, but I am fairly sure this arose from the severe anhedonia and blunted affect psychiatric comorbidities I had alongside my ME/CFS. Suicidal ideation frequently appears in anhedonia. Now that the anhedonia is much improved, my suicidal ideation is significantly less (but still appears now and then).

Of course, it may not be easy for an individual to work out the source of their suicidal ideation.

I stongly disagree with the suggestion that having an "exit plan" is associated with any psychiatric comorbidities. I'd put my dog down if she was in significant and intractable pain. And I demand the same right for myself.

In no way did I suggest that thoughts of suicide were in anyway associated with psychiatric issues.

 

[Hip]

You repeatedly omit the entire title
"As many as one in five CFS patients kill themselves"

Well, anyway, let's agree to disagree. It's not a major issue.

I stongly disagree with the suggestion that having an "exit plan" is associated with any psychiatric comorbidities. I

Well my exit plans (I researched the best methods, just for the comfort of being prepared) were made because of the hellishly torturous mental symptoms I was experiencing, mainly severe anhedonia, but also extreme anxiety, which was accompanied by anxiety psychosis. These mental conditions were kicked off by the same virus that triggered my ME/CFS, but nevertheless anhedonia is not considered a part of ME/CFS.

Unfortunately cannot imagine what it would be like to be in the position of considering suicide as a result of extreme physical pain, as I don't experience physical pain as one of my ME/CFS symptoms. I only know what it is like to want to kill yourself as a result of mental torment.

I guess that suicide in order to escape such severe physical pain would definitely be as a direct result of ME/CFS.

 

[Sasha]

What I am getting at is that this study met very rigourous stnadards for population follow-yp studies, adopted from the current HHS and CDC standards. The people that were lost to follow-up were very lost to follow. As for your calculation of 11 in 1430, we contacted 1020 patients. There for, an absolute lowest possible figure would be 11 of 410. If everyone of the 410 patietns we were unable to reach had died (a frightening prospect in itself) and not one of them had committed suicide (again, highlyunlikey) the most optimitic percentage for deaths from suicide in this group of patients would be still be 11 in 469 (2.3%).

Hi again - I'm afraid we're at cross-purposes once more.

I take your point that this study was rigorous in its follow-up and appreciate the amount of work and thoroughness that went into that.

My point is about what is the appropriate denominator for those 11 suicides, if we want to talk about what % of PWME kill themselves.

Is it:
(a) the number of ME deaths in the sample (59):
(b) the number of patients who could be followed up (1020);
(c) the number in the original total sample (1430).

The one thing we know is that it isn't (a).

I hope we can agree it's at most (c) and at least (b).

The minimum % is therefore 11/1430 = 0.8% (smallest possible number of deaths divided by the whole sample).

The number of patients lost to follow-up is 1430 - 1020 = 410.

The maximum % is therefore (11 + 410)/1430 = 29% (largest possible number of deaths divided by the whole sample).

I think that what this shows is the difficulty of doing this kind of research but without doubt, it's worth it. There are methods to do age-adjusted calculations of this kind but my poor brain's not up to that now.

Thanks for raising such an interesting topic, @CBS - it's clearly an important one, my number-quibbling notwithstanding, and I'm glad you brought it up.

 

[CBS]

Hi again - I'm afraid we're at cross-purposes once more.

I take your point that this study was rigorous in its follow-up and appreciate the amount of work and thoroughness that went into that.

My point is about what is the appropriate denominator for those 11 suicides, if we want to talk about what % of PWME kill themselves.

Is it:
(a) the number of ME deaths in the sample (59):
(b) the number of patients who could be followed up (1020);
(c) the number in the original total sample (1430).

The one thing we know is that it isn't (a).

I hope we can agree it's at most (c) and at least (b).

The minimum % is therefore 11/1430 = 0.8% (smallest possible number of deaths divided by the whole sample).

The number of patients lost to follow-up is 1430 - 1020 = 410.

The maximum % is therefore (11 + 410)/1430 = 29% (largest possible number of deaths divided by the whole sample).

I think that what this shows is the difficulty of doing this kind of research but without doubt, it's worth it. There are methods to do age-adjusted calculations of this kind but my poor brain's not up to that now.

Thanks for raising such an interesting topic, @CBS - it's clearly an important one, my number-quibbling notwithstanding, and I'm glad you brought it up.

I disagree that for lifetime risk the most appropriate denominator is not (a). To me, (a) is clearly the closest known estimate. The number is defintely not (b) or (c). The odds that none of the 1020 people still alive nor any of the people lost to follow-up committed suicide is so infinitely small as to be unfathomable.

 

[Sasha]

Thanks for reading my post, @CBS - I think I'll stop there. I don't think I'm helping!

Thanks again for raising the issue.

 

[CBS]

Thanks for reading my post, @CBS - I think I'll stop there. I don't think I'm helping!

Thanks again for raising the issue.

Yeah, not really sure what it is in each other's arguements that we're missing but I agree that this is a good place to at least take a break.

I will keep your thoughts in mind.

Thanks to you as well back at ya!

 

[CBS]

Well, anyway, let's agree to disagree. It's not a major issue.


Well my exit plans (I researched the best methods, just for the comfort of being prepared) were made because of the hellishly torturous mental symptoms I was experiencing, mainly severe anhedonia, but also extreme anxiety, which was accompanied by anxiety psychosis. These mental conditions were kicked off by the same virus that triggered my ME/CFS, but nevertheless anhedonia is not considered a part of ME/CFS.

Unfortunately cannot imagine what it would be like to be in the position of considering suicide as a result of extreme physical pain, as I don't experience physical pain as one of my ME/CFS symptoms. I only know what it is like to want to kill yourself as a result of mental torment.

I guess that suicide in order to escape such severe physical pain would definitely be as a direct result of ME/CFS.

I won't argue that depresion isn't a significant issue in some situations. Within a couple years of getting sick I really struggled with the pain as well as the loss of how I defined much of who I was ("up and coming social scientist at Stanford"). The loss of careeer along with the pain was tough.

After 21 years of dealing with the disease, I practically never give a moments thought to loss of career. Yeah, there is a lot that could have been but I have a wonderful marriage, supportive family, and the best doctors on the planet (I fired anyone who wasn't). I have no needs that go unmet. Housing, food, and medical care are never an issue. Even so, I have severe pain overwhich we have tenuous control. For the last two years the pain has been ver managable. However, there have been periods where the physical discomfort has been at a level of 8+ (1 to 10 scale) for 16+ hours a day. Years ago I was caught in a small house fire. I suffered 2nd and 3rd degree burns on my hand/wrist. This is the reference I use for my 1-10 scale. The burns and the twice daily debrieding (to the bone) for a month I would rate as an 8-9.

I would not judge anyone for wanting to escape that kind of pain if there was no end in sight. My access to good medical care gives me hope. Hope (and options) that have likely kept me from ending my life.

 

[alex3619]

The absence of severely ill bedbound patinets posting on PR in no way suggests they don't exist. They are often just too sick to have the luxury of spending dwindling resourse here.

There are quite a number who simply disappeared from the forum. Nobody knows what happened to them. It could be completely benign in most cases. We simply do not know, and that is the issue.

 

[Hip]

Well it certainly has been an eye opener for me to learn how bad the pain in ME/CFS can get. I am I correct in thinking that this is muscular pain that you have, @CBS? I never realized this "myalgia" of "myalgic encephalomyelitis" could be so horrendous.


It might be interesting to conduct a poll regarding which of the ME/CFS symptoms, and which of its common comorbidities, make patients get suicidal thoughts the most.

I can't imagine that the ME/CFS symptoms such as brain fog, fatigue, unrefreshing sleep, sore throat and blurred vision would lead to significant suicidal ideation. These symptoms I find don't cause any immediate suffering (although there is a vague indirect suffering due to the limitations placed on your life because of brain fog and fatigue).

Perhaps higher up on the scale of misery might be the ME/CFS symptoms of sound sensitivity, light sensitivity, stress and conflict sensitivity, emotional sensitivity, emotional lability (exaggerated or unstable emotions), irritability, headaches, chest pain and gut pain. These might add to the overall suffering that makes people begin to contemplate suicide.

And perhaps highest of all ME/CFS symptoms, in terms of precipitating the contemplation of suicide, might be severe muscular or joint pain.

Then for the common comorbidities of ME/CFS, perhaps strong provokers of suicidal ideation might be severe levels of depression, bipolar, anhedonia, generalized anxiety disorder and panic attacks. Around half of ME/CFS have at least one such psychiatric comorbidity.

And out of the physical comorbidities of ME/CFS, multiple chemical sensitivity is one that involves significant suffering, and so may provoke suicidal ideation.



Do people agree with this approximate ordering of the suicidal ideation potential of ME/CFS and comorbidity symptoms? Or for you own list of most miserable symptoms, would you order it differently?

 

[Sushi]

And perhaps highest of all ME/CFS symptoms, in terms of precipitating the contemplation of suicide, might be severe muscular or joint pain.

And severe, unrelenting migraines--which also often includes severe sensory sensitivity.
Sushi

 

[Hip]

And severe, unrelenting migraines--which also often includes severe sensory sensitivity.

Good point, I forgot about migraines. And they certainly are linked to suicides, a quick Google check reveals.

 

[Hip]

There are quite a number who simply disappeared from the forum. Nobody knows what happened to them. It could be completely benign in most cases. We simply do not know, and that is the issue.

Yes I often wonder about that. The suicide possibility certainly crossed my mind regarding these; though they may also have stopped posting because they got much better, or got much worse (and so do not have the energy or focus to post), or they no longer found the forums useful, or they found some other means of support or social company.

 

[CBS]

@ hip - Thanks for asking. Myalgic pain in was an issue for four years. It was miserable but not severe enough to consider killing myself. The hardest part for me has been severe "complex atypical migraines." I am lucky to be a strong Valcyte responder. NOTHING else touches this. I've tried coming off of Valcyte twice and within a few weeks I am back to being bedbound. I likely cannot keep taking Valcyte indefinitely ($45K a year!) and we are constantly trying to find something else that works. So far nothing. Without it I'd be dead. As for light and sound intolerance, again, these are profound. Off of Valcyte and when my symptoms were at their worst, in a severe sound sensativity (even the softest music - think Nora Jones - at the lowest possible volume was painful and would precipitate a severe decline) and light sensativity required constantly pulled blinds. Walking any distnace (10 feet to the bathroom) was a major challenge. Fifty feet from the car to the house required crawling (dizziness/disorientation, significant chest pain and SOB) and several stops laying down to rest (with my wife encouraging me to "pace myself" so that I would make it to my bed - our house is not wheelchair friendly but I needed a wheelchair in other situations, if I went out at all which was seldom).

Not sure I'd put these sorts of light and sound issues in the same category as emotional sensativity. More like body struggling to siply meet metabolic demands in a state of complete bed rest. Had a period when I couldn't digest food without triggering significant shortness of breath and chest pain. Lived mostly on pediasure.

 

[CBS]

I forgot, I needed someone in the house with me 24/7. If it weren't for my relatives (my wife resigned from the board of her law firm and abandonded her postion as a partner - going of council - to care for me) I would have needed to be in a rest-home (although I doubt I could have received the needed care there). Other relatives were enlisted to give her a break or to be there when she couldn't work from home. Luckily the longest in any one strech that I've been this sick was 7 months but the breaks felt very tenuous at times.

 

[CBS]

Getting back to the topic of this thread, at my very worst in the last 5 years, I cannot imagine how I could have mustered the resources to commit suicide.

 

[CBS]

I'd like to put this out to the group. When you see stories or video of people who are profoundly ill (such as @priya who posted earlier), what are you thinking? Do you ever imagine that you could find yourself in a similar situation? I never dreamed things could get that bad. It was simply beyond my ability to comprehend what it would feel like to be so light sensative that looking at a computer screen for any length of time was completely out of the question. And in 6-7 months I went from moderately ill to profoundly ill and bedbound.

 

[Roseblossom]

Re: the title of this thread "...as many as one in five CFS patients kill themselves."

I'm no math whiz, but one in five = 20%, right?

So for every million of us, 200,000 of us are going to commit suicide?

*blink*

Edit: Well this is a good lesson not to post before I read the whole thread; I was just so shocked by the headline that I blurted.