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

[CBS]

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*

We clearly need more research but the recent CFI EPI project and the 2006 Jason study would suggest that at least in the groups that they studied, 200,000 people of those million would eventually die by suicide if those numbers contuied to hold up (and reasonable people could craft arguements as to why they might or might not - which is why we need the researchj).

 

[Hip]

@ 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.

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.

Have you read about transcranial magnetic stimulation, by the way, which has recently been approved for migraine treatment? Valcyte can be bought more cheaply from generic suppliers such as these; I don't know if that is of any use.

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.

Being someone who was interested in aspects of philosophy, after I went through several years of Dantian hell in terms of mental torture, and even while I was going through it, I started to think of the philosophical perspective. I know it sounds absurd to consider philosophy in the midst of such torment, but the thing that really got me was the fact that this dire torment could even exist at all.

I would have never thought that human beings, us conscious entities, could be exposed to torture like this. I just kept asking myself the question: how can the universe give rise to such states of hell? How is it that this torture of a conscious beings can be possible? How can a conscious mind be thrown into such a hell?

If I was not conscious, I would not be able to feel such mental pain; so therefore, these torturous states of being must be an occupational hazard of being conscious. But it seemed to me to be a huge design flaw of the universe, or a flaw in the nature of consciousness, that this universe can and patently does support such states of excruciating hell.

 

[Gingergrrl]

@CBS

I know we have talked a little bit but reading this thread, I realize that I share a lot of symptoms with you (minus the migraines which I luckily have never had.) I appreciate you sharing your story with all of us and the work that you did at Stanford.

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).

I cannot tell you how much I resonate with this statement. I cannot walk more than a few feet without shortness of breath and chest pressure which often escalates to severe chest pain. I am now using a wheelchair to get from our home to the car in the garage. This is the most frustrating symptom for me b/c it stops me from having any kind of real life.

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.

Exactly, it is as if my body cannot meet the metabolic and energy demands unless I am lying down flat. I had a period where eating and digesting food triggered significant shortness of breath and chest pain. At present this really varies and sometimes I can eat food with no problems and other times I can't.

I am lucky to be a strong Valcyte responder. NOTHING else touches this.

Thus far I am also appearing to be a strong Valcyte responder and with only a low dose. I wrote about my improvements with Valcyte in another thread so won't get more off track here!

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.

I relate to this as well and while I can be left alone for several hours, it often has turned out badly and in general, if my husband is away for more than just a few hours, my mother comes over to make sure I am okay. If it were not for the cardiac and autonomic issues, I would not need this level of care.

Your wife sounds like a truly amazing person, like my husband, and there is no scenario in which I would kill myself b/c I think of what it would do to him. Even at my worst moments, when I think of my husband and family, I have to keep fighting (and this is just something personal for myself- not a value that I place on others.)

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?

You asked about Priya (who posted earlier in this thread) and I do not know what I would do in that situation. When I read her story, my first thought was, "There but for the Grace of God, go I." I wish I could help her with solid concrete resources to ensure a place to live, but I do not know how. But I have been thinking about her since I read that post and wishing I could help.

 

[taniaaust1]

If you are trying to access suicide risk amongst the ME/CFS community I think the poll is worded wrong.

The answer I gave isnt really true for the question asked with that being "Have you ever considered suicide for relief from your ME or CFS symptoms".

I did answer yes I have tried but it wasnt at all due to my ME or CFS symptoms. I have attempted suicide due to how terribly others have treated me due to having ME/CFS.. not due to my symptoms.

I only "considered" it thou when I was bedbound long term where my bedroom become like a prison cell and I was in an incredible amount of physical pain. So only considered it based on the most shocking symptoms at that point of time but never tried it for that reason.

My actual suicide attempts thou have been over how badly others have treated me over having this disease and the abuse Ive got from others due to this esp others who's role should of been to help me.

Ive abused to the point of actually been physical assulted due to being sick with this illness eg one time I even had my head stood on in a forced attempt to make me get up off the ground after I collapsed.

Ive had lots of abuse around having this illness which now isnt physical abuse but other forms of abuse towards me continues to this day... all cause there are some people who do not believe Im really sick (state goverment disability service who do not believe ME/CFS is a serious disease).

So I think you will get answers which will underestimate the real situation of suicide in ME/CFS or thoughts of it by the question you ask when you ask if "symptoms" have made people try it or think about it.

Question should be something like "Due to various factors of having ME/CFS has this lead to considering suicide"

Loss of job, kicked out of family homes due to being sick or other things really contribute to those who have ME/CFS committing suicide.

 

[taniaaust1]

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?

As minkey said, suicide is a viable option for some of us in the situations we've found ourselves in. In my case I dont get the support I need to live any kind of fair kind of life, basic life needs often go unmet in my case.. unprovided due to discrimination.. so hence suicide becomes a viable option.

I too have a banned suicide book, in my case I only brought it recently. I dont want to fail in that next time. There is also suicide groups online.

There could be well ME/CFS suicides happening which others dont know about cause these books tell also how to do it secretly in ways which cant be detected after death (if one has another to help, to take away the gear which was used).

I wish those around me, family etc could understand when I do this but unfortunately only people like cancer victims often get that understanding when others support the persons right to die choice. We dont seem to get given the same right to die choice.

 

[taniaaust1]

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!

Thanks Sasha, I really appreciated that. So one can say 20% is a good representation of the ME group suicide rate .. but not the CFS group who is often more about fatigue then pain which I think is more common in a ME representive group.

If any "symptom" was to get to me to cause suicide, it would be pain. ME pain can be very intense.

 

[taniaaust1]

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.

If they fixed the disbelief and other things often directed at us by doctors and others people often go to to get help from esp when things for them are getting desperate, there would be far less suicides in the ME/CFS communities.

What they really need to put money into is the truth of ME and just how much of a serious illness it is. Focusing on a suicide aspect would just help further ground the view its mostly a psych issue.

 

[taniaaust1]

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.

Now that would be a useful psych study for a change.

I think it would too come as a slap in the face though to the medical profession as I bet one of the higher predictors would be not having an knowledable and understanding doctor supporting the ME/CFS patient.

 

[lansbergen]

Focusing on a suicide aspect would just help further ground the view its mostly a psych issue.

Och yes, it will be misused.

 

[taniaaust1]

I'm not convinced that main stream psychiatry has anything of substance to offer us.

Unfortunately many of us know that is so true. In fact main stream psychiatry can be quite bad for us.. we often react negatively to thier drugs and when they try to counsel us, they truely dont know the right things to say and can end up leaving a ME person feeling worst due to having been given a heap of unsuitable suggestions of things the person couldnt do.

Ive tried to commit suicide before right after such an appointment made me feel worst.

Some psychs have said to me (2 or 3 of them, last said to me by a hospital psychriastrist only about 3 weeks ago) "I dont understand you" ..cause they dont understand ME and hence they dont understand my thoughts about certain things or why I do things as I do.

Hearing that sure doesnt give one much confidence in them and cause they dont understand me.. then they can end up getting nasty towards me eg "You make these things up to get attention, 90% of your symptoms are in your head". That was actually said to me only weeks ago by a psych the day after I had a serious suicide attempt so ended up in hospital.

The psychs are often doing more damage to us then harm... I certainly will make sure I wont screw up suicide next time after such things have been said to me (hence why I recently brought a suicide book). I got even more motivation now to make sure it works properly as I dont want to run into another psych like that.

Its not surprising to me at all that so many of us are ending up commiting suicide when many psychs have such an attitude like that towards those who have ME/CFS so we cant even seek help.
........

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.

 

[MeSci]

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?

There is a thread here where people discuss their most-hated symptoms, and a poll here about pain.

 

[MeSci]

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.

I know what my causes were: severe early-ME symptom (unpredictable and frequent vomiting), loss of career prospects, lack of belief, support and treatment, loss of car, impending loss of house, serious poverty, all this leading to severe clinical depression including anhedonia. It wasn't just one or two things - it was the combination.

 

[MeSci]

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.

I found your analysis very helpful - thank you!

 

[MeSci]

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 think - how horrendous - I wish I could help. Then I think - I must take EXTREME care not to risk getting as bad as that. Among other things.

 

[Sasha]

Thanks Sasha, I really appreciated that. So one can say 20% is a good representation of the ME group suicide rate .. but not the CFS group who is often more about fatigue then pain which I think is more common in a ME representive group.

If any "symptom" was to get to me to cause suicide, it would be pain. ME pain can be very intense.

No, Tania - I made some later posts about the numbers but I'll leave you to read through them! The % could be very much lower, in my opinion.

 

[taniaaust1]

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. Im not currently in your same situation (have been thou 100% bedridden in past for 9mths) but was put in a situation where there was no options at all for me left with certain necessarily life stuff, in my case the answer seems to be to take the government departments to court for discrimination so I can get my needs met, health wise and otherwise.

I had the first hearing for the court case yesterday, a phone hearing cause I cant leave myself my home without a support worker to push a wheelchair (and even then I often cant go out).

Im wondering why there is no place at all for you to go. Are you being given the same options in your country as any other extremely disabled person would be in your situation?

If not.. maybe a court case for discrimination against your government could be your answer too. (my situation is more about getting the right amount of care services Im needing which I cant due to gov ME/CFS discrimination).

Taking the government to court, so far is proving to be easier then I was expecting it to be. I dont have a lawyer as this illness is to hard to explain to another and they screw it up so are representing myself with the help of the court people.. all via phone and info I send in for hearing directly to the court judge

The judge takes that in consideration too that Im self representing. Im too sick to be dealing with lawyers.

 

[MeSci]

There could be well ME/CFS suicides happening which others dont know about cause these books tell also how to do it secretly in ways which cant be detected after death (if one has another to help, to take away the gear which was used).

If my attempt had succeeded, it would not have been known by anyone to be related to ME, as I wasn't even diagnosed for another 3 years after that.

 

[MeSci]

Focusing on a suicide aspect would just help further ground the view its mostly a psych issue.

which would be highly ironic, as it is the psychoquacks themselves who are the main cause of our neglect, which can greatly increase our suicide risk.

 

[MeSci]

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

'As many as' effectively means 'at least'. If you substitute simple numbers, e.g. 'as many as five', that has to mean five or more, as three or four would not be as many as five.

I wonder whether the words with your intended meaning are 'up to', although I find that rather meaningless as it could mean anything from zero upwards.

Maybe it would be more accurate to say something like 'It is reported that one in five...' or 'It is possible that one in five...'

 

[taniaaust1]

Both suicide and attempted suicide were illegal in Great Britain until 1961. Attempted suicide was a capital crime, and the punishment was death, usually by hanging.

That's so irronic.. giving the one who commited this capital crime what they wanted.. death.