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

[taniaaust1]

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.

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.

Hip.. any Wessely studies tend to do the studies on those who have chronic fatigue thou they like to call it CFS. So I dont think that at all can be compared with something like Dr Petersons ME patients. ..

and as those other two researchers did that study with Wessely and no doubt used a chronic fatigue defintion, I would be surprised if they used a better definition in their other study.

IMO Wessely studies dont count to do with most of us here.

 

[taniaaust1]

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).

For some it may not be coming from either of those things. It may simply be they feel like they are invoking thier right to die as they no longer like the quality life they have.

They may not even have depression but just be in unsubstainable life situations eg just like the bedbound one who posted earlier who simply has no where to go but needs to leave her home soon.

For another it may be cause she needs full time care but cant get it and just cant live a life without that .. or someone who doesnt want to be a burden on their family and be ruining their lives.

 

[taniaaust1]

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.

ME pain can be quite horrendous, Ive had so many different kinds of pain with it through out the years some severe. Imagine someone drilling into your bones and within them (one of my pains felt like that.. I had that pain for maybe a few years).

I also had all over all, I used to be almost freezing at night as the weight of the sheets on my bed hurt me too much so I couldnt sleep covered. My young children couldnt hug me as it hurt me far too much. I dont think there was a part of my body in which didnt feel some kind of pain, even my eye balls hurt.

All my FM points (thank God I no longer get that) used to be in flare.. I couldnt have body parts laying on other body parts as it hurt too much so used to have to protect parts of my body from other body parts via a pillow eg stop a leg from resting or hitting another leg as it would make me yelp or cry in pain.

To all the join, muscle, inside bone, skin and everywhere else pain.. I used to also get a pain which was sudden and could happen in any body part like I was being bitten..that used to make me yelp when it happened.. sudden and sharp.

Top that off with horrendous period pain which had me faint or I would be squirming around in agony as it hurt to much till I was so exhausted I'd pass out in exhaution.

I forgot to mention ME headaches too and bowel spasms which can floor me. I had one of those last year which collapsed on toilet floor and I was near screaming (I made ton of noise that the one I was visiting came running) and I near fainted on that occassion.

My constant pain was torturous when I had ME more severe. I had pain worst then childbirth pain (and Ive gave birth to both my children when I was a teen without an anethestic and ripped and needed stitches.. ME pain is a lot worst.

It can become unbearable.

"I can't imagine that the ME/CFS symptoms such as brain fog " could lead to suicidal idealation.

I can imagine it can if its severe enough. I get it quite severe so my brain issues do make my life quite a nightmare at times and end up getting me into a lot of trouble with others.

Brain fog hasnt made me suicidal yet but I do think it would be possible due to the troubles I get with it.

eg I have people get angry at me a lot due to my brain fog eg I forget peoples birthdays even my daughters.

I got into trouble years ago with local council as I couldnt remember to put my bin out and the rubbish build up and up.. in the end I had about 17 bags or more fill of rubbish which animals then got into. The council ended up sending a dump truck to my house out of normal council hours.

Due to my brain issues, car park security were going to call police on me. I had to ring my friend to get me out of trouble. (I'd broke a boom gate to get out of car park as I couldnt remember how to work the ticket machines and I needed to urgently get home before I collapsed).

I cant even safely go to the shops myself even if I could do it without a collapse due to my brain issues become so severe when Im out and upright.

So I can imagine brain issues making someone maybe not want to live. I cant even safely cook due to my brain issues. Im making constant screw ups if Im on my feet due to my brain. I end up having to do things over and over as my brain screws them up.

(You cant see anywhere how bad my brain is when Im at this website as Im sitting with my legs up). Think of having to put up with spontanous events as if one had Alzeihemers..that's what my brain is doing to me.

Ive been taken out forgetting to dress properly twice in the past month and hence then had to be brought back home as soon as I realised my situation.

(and then that causes an issue as Ive used up my limited support time as I had to be brought home to put the knickers on I forgot or put a clean top on as I'd been taken out with my other one covered in food).

With my brain.. I need help organising things at home or I go out without things... I put things down without even knowing when I go to walk out of the door.

Last time (a week ago) I got taken out without a support worker was a disaster and put me into hospital as my housekeys and phone got shut inside.. so I was locked out unable to get straight to bed when very sick so collapsed and an ambulance had then to be called.

This all happened due to my brain and the fact I'd been locked out of my home due to forgetting my keys. Brain issues cause LOTS of trouble if they are kicking in severe at times and cause one to feel completely unsafe.

People may commit suicide due to feeling like they can no longer take care of themselves due to the brain issues.

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?

Nope I dont agree with order you put them. I also have fairly bad MCS and you put it as something very bad. Yes it is bad in many ways as its highly restrictive on what one then can and cant do .. I cant even have a visitor wearing perfume or deodourant enter my house. ..but having severe brain issues is far more disabling.

At least with MCS it is controllable some by avoidance or just staying home... brain problems (thou MCS can cause those too) arent as avoidable and one gets in trouble with forgeting to pay bills (so get fined, the locking myself out costed me a lot of money for a locksmith when one is on a disability pension). Its highly stressful having brain issues kicking in very severe at times.

I can get to the shops and suddenly not remember my pin number or where I live or forget why I asked my support worker to take me to a certain place. There has been many a time when Ive had to ask one of them "Why did we come here?".

Brain issues can make one completely nonfunctional at times and may cause the situation in which another has to watch you to keep you safe. (My workers have had to drag me off of roads back before I had to use wheelchair while out..as I'd daze out in the middle of crossing a road, forgetting I was crossing one).

The severity of ME brain misfunctions shouldnt be underestimated.

 

[lansbergen]

used to also get a pain which was sudden and could happen in any body part like I was being bitten..

Like stabbed by an insect or with a sharp object?

 

[taniaaust1]

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.

I have had the unfortunate experience of getting as ill as it sounds as priya is in the second year I had this illness. So I dont have to imagine it.

I crashed terribly bad, Im lucky I survived it. 100% bedbound, incredible level of pain everywhere, couldnt handle light (completely dark room), couldnt handle sound.. lost my ability for speach (had to use basic sign language), couldnt sit most of the time, had trouble holding my head up.

Shaking so much I couldnt feed myself with a fork so had to use my hands, comatose up to 3 days at a time without food/water etc etc.

Knowing how bad I could get if I worsen.. I believe increases my suicide risk as Im determined never to go throu that again. Anyone that has experienced has the fear hanging over them it could happen again.

Next time it does I will die in my current situation even if I didnt commit suicide as there is no one to take care of me (my 10 year old in that year used to be my caregiver and bring me water and food on the rare occassions I was aware and awake).

 

[taniaaust1]

Like stabbed by an insect or with a sharp object?

yeah pain like being bitten or stabbed with a knitting needle.. which was highly embarrassing if I was at the shops when it occurred as I would loudly yelp.

I also had Morgellon's at that point too.. so all over squirming, itchy, like also ants running all over my body feeling (imagine sitting on an ant nest..that is how my body felt). I used to have to sleep in salt and bicarb bath all night just so I could sleep with it as it would help a bit with the severe itchiness.

That severe all over itchiness made me want to kill myself at one point (it made me feel like i was going to go crazy).. it was as bad as having pain as I it was constant and I couldnt sleep with it (except in bathtub as I explained above).

At least with pain if it gets bad enough you just pass out, with severe unbearable itchiness, you just want to rip your body apart or start cutting your skin off with a knife.

People dont think of itchiness as a possible severe symptom..but if you sit yourself down on an ant nest you would soon change your mind. It can send you near insane.

 

[lansbergen]

That severe all over itchiness made me want to kill myself at one point..

It can drive me crazy sometimes but it passes. I think the stabbed feeling is cell lysis and the itching a furieus local immune response to that.

 

[taniaaust1]

That really sounds like a horrendous assault. And your post makes me realize that light and sound intolerance can become very painful. I now remember a story I read of a ME/CFS patient who found even the faint sound of a lead pencil writing on paper excruciatingly painful. I found amisulpride pretty helpful for my sound sensitivity, but my sound sensitivity is nowhere near the level you are describing.

My sound sensitivity (fortunately its nowdays minor thou still there a little) used to cause me like seizures. It would mess up my whole neurological system so I'd start jerking and shaking sometimes quite violently. So not just cause pain like going throu throu ones head.

I used to say that I could hear a pin drop. One time I swear I heard a bird poop on my roof.

 

[taniaaust1]

It can drive me crazy sometimes but it passes. I think the stabbed feeling is cell lysis and the itching a furieus local immune response to that.

Does yours seem to have a time cycle to it? Mine always got even worst at night .. re about 11pm . So I wonder if there was some relationship to hormones (or maybe I did have some kind of parasite in my skin and body???)

 

[lansbergen]

Does yours seem to have a time cycle to it? Mine always got even worst at night .. re about 11pm . So I wonder if there was some relationship to hormones (or maybe I did have some kind of parasite in my skin and body???)

Mine is related to flares.

It can feel as if parasites crawl under the skin but I did not and still dont believe that is the case. I think it is more likely cell lysis.

 

[taniaaust1]

It can drive me crazy sometimes but it passes. I think the stabbed feeling is cell lysis and the itching a furieus local immune response to that.

I had about 1-2 years of that itchiness CONSTANT to some degree or another. Not one part of my skin was unaffected by it.

 

[Hip]

The severity of ME brain misfunctions shouldnt be underestimated.

I was not considering the severity or disabling effect of each ME/CFS symptom as such, but rather which ME/CFS symptoms might give rise to suicidal ideation, which is a different thing.

The ME/CFS symptom that I find disables me the most is brain fog; but I don't find that there is any intrinsic direct suffering with brain fog. Sure, if I had to struggle with a job in order to make a living, possibly brain fog could make things unpleasant. And the loss of my ability to perform my previous professional job in computer software a consequence of brain fog. But just on its own, there is no direct pain or suffering involved with brain fog, I find.

Whereas when I had severe anhedonia, that was not directly disabling at all, yet it induced intense suicidal ideation in me almost every minute of the day.

 

[Hip]

People may commit suicide due to feeling like they can no longer take care of themselves due to the brain issues.

This is certainly possible, but in these situations it's not the brain issues per se that cause the suicide, but the brain issues in the context of the difficulties in dealing with life. And that's harder to quantify. Healthy people also commit suicide because of the perceived or actual difficulties in dealing with life.

 

[Undisclosed]

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

Sorry for not responding sooner @Sherlock as I haven't been able to get to this thread until now. I don't think this thread needs to be members only. I don't want to send the thread off-topic with a discussion like this but I doubt a thread about suicide is going to result in anything negative. There are quite a few public websites dedicated to suicide and nobody is reporting anything untoward

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.)

I don't think that the 'authorities' would or could use any of the comments here to lock people up as it is just a discussion about suicide. The 'authorities' (whoever that may be) aren't trolling through billions of internet posts related to looking to lock people up because they are discussing suicide. They are much too busy with terrorists, drug traffickers, human sex trade, pedophiles and other illegal activities to be bothered with this kind of thing. People will draw uncharitable conclusions about us whether or not the discussion is about suicide or something else because that's their mindset.

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.

@CBS and anybody else using the poll function -- moderators can edit poll questions, all you need to do is ask.

The present poll should not be interpreted as scientifically valid and comparisons should not be made to surveys of other populations. My goal was to raise awareness and to start a conversation while trying to get a "first pass" feel for some of the issues that might arise if a larger project were to be undertaken in this population.

I think the issue is really important. There is a memorial website for people with ME (sorry can't remember the name) and there are many many suicides listed. Why are people with ME committing suicide? Un-met medical needs? Social isolation? Being treated poorly by family, friends, medical profession? Loss of mostly everything? There is a huge list of reasons that need to be investigated, they do it for other diseases.

........

Im currently in the situation thou in which I do have a decent psychologist I like who does understand ME but cant even get to her due to my health (last time I tried I ended up having to be ambulanced to hospital as I collapsed right after the appointment, didnt even make it back to bed) and my government doesnt pay medicare for phone appointments to psychologists.

So Im left without a suitable psychologist even thou Im suicidal and planning.

The sicker one is with ME, the less services become assessable to one. One really does end up in a hopeless kind of situation.

I don't think you can expect a psychologist to know about specific illnesses. They aren't treating your illness, they are trying to help people cope with their illness, life circumstances etc. It is a terrible situation for people bedbound or unable to get around because the system isn't geared towards home visits except for things like palliative care.

We need research into ME and suicide. I don't believe for one second that people with ME who have killed themselves have done so due to depression. I think it's more likely neglect, having untreated unimagineable pain and other untreated symptoms, losing our careers, living in poverty, being refused disability and proper medical care etc, etc. People have the right to choose how their lives progress and it's not shocking that some just choose death over life due to the terrible circumstances in which they live.

 

[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.

Hi @MeSci - Sorry I missed this yesterday. I'm not sure if I've responded in other comments on this thread but please let me know if you still have any questions.

Shane

 

[MeSci]

Hi @MeSci - Sorry I missed this yesterday. I'm not sure if I've responded in other comments on this thread but please let me know if you still have any questions.

Shane

I don't think you have explained clearly the time period over which the study took place - how long the patients were monitored for. This is crucial, as are their ages, including age at suicide. The latter is important as suicide risk varies with age. The former is important as it would tell us how many people died over how many years.

 

[Gingergrrl]

I was not considering the severity or disabling effect of each ME/CFS symptom as such, but rather which ME/CFS symptoms might give rise to suicidal ideation, which is a different thing.

@Hip, I don't think it would ever be possible to make a hierarchy of which symptoms correlate to the most suicidal ideation. I think there is tremendous variety in what symptom is causing each individual the most distress. It usually correlates to their level of suffering (from whatever symptom is the worst for that individual), lack of help/support system, and a series of losses (health, career, mobility, independence, and for many housing, poverty and not getting basic needs met.)

So for one it may be brain/cognitive losses, for another severe intractable pain, for me it is the cardiac and autonomic stuff, for someone else it may be having family and doctors not believe them, or for another it may be losing their career/income or relationship. The commonality IMO is the overwhelming sense of loss of the life you planned to have that is now gone.

 

[Hip]

I think there is tremendous variety in what symptom is causing each individual the most distress.It usually correlates to their level of suffering (from whatever symptom is the worst for that individual), lack of help/support system, and a series of losses (health, career, mobility, independence, and for many housing, poverty and not getting basic needs met.)

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

You have good list of categories of what might lead to suicidal thoughts, and reading this has spurred me to propose three major categories of things that may give rise to suicidal thoughts.

(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.



In my case, I get suicidal thoughts from category (1) causes, mainly from anhedonia, and to a lesser degree, from blunted affect (emotional flatness), which has repercussions in my social life (as a result of blunted affect, it's hard for me to feel the normal human response to friendship, even when I am with my good friends that I have known for years; nor do I feel any of the strong romantic thoughts I once had).

I don't get any suicidal thoughts from category (2) causes because my present circumstances are reasonable; though I do worry about what might happen to me in the future, and as a result, I do sometimes find comfort in the idea of suicide as a means to avoid all the unpleasant things that might happen to me if my circumstances come tumbling down, which is category (3).



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.

The commonality IMO is the overwhelming sense of loss of the life you planned to have that is now gone.

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?

 

[Sushi]

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 agree that, for many of us, we have "gotten used to it" and found other things that make life worth while.
To quote Ken Wilber (2002--roughly 16 years into his illness):

fortunately, i had cultivated a lifestyle that never required a body -), so i had a pretty good middle ten years (roughly, all of the 1990s).

 

[CantThink]

I think the issue is really important. There is a memorial website for people with ME (sorry can't remember the name) and there are many many suicides listed.

There's this one...

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