Learning how to die

I was intending to write a post with more tips for sleep today, as I’m aware I haven’t really written any actual Tips for ME recently. However, on hearing of the death of Justin Noble (@Justin30 over on Phoenix Rising), and finding that my mind flits it’s attention too frequently to the recent paper about age of death in people with ME, I think it is more authentic to write about what I’m genuinely thinking about. I will try to frame this in the sense of exploring how we process fear of death though (so in a sense this is ‘possible tips for processing possibly dying a ME related death one day’). I should probably make it clear that I have no expectation that I will die in the near future – except for in the sense that anything can happen at any time.

I don’t advise reading this if you are currently feeling happy and carefree (just enjoy your life!) or if you are feeling very desperate. If you are feeling very desperate please, please, please reach out to someone you know or a helpline (such as the Samaritans). I should make it clear from the outset that personally I am too ill myself to give appropriate support at that level.

This is one of those posts where touchtyping has been a lot easier than editing down. I’ll add hyperlinks to the contents though and you can treat each section as separate posts, or skip to What can help? if you have trouble reading.

Contents:
 Expected age of death
Responding to the loss of specific people
Fear of our own death
Fear of not dying
What can help?
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Expected age of death

There usually appears to be an under reporting of ME related deaths in the few peer reviewed papers addressing the question. This maybe related to the widespread issues with ME research and highly contested agendas. I don’t want to get into all that here, but for example this study relies on CFS/ME centres in England and Wales diagnosing CFS in a way that we would recognise as also being ME (probably in reality it includes a proportion of people with ongoing, vague fatigue, which doesn’t map well onto the specific nature of ME). Also we know all too well the agenda of the ‘et al’ authors of this paper:

Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register. Roberts, Emmert et al. [and note al here is Wessely, Chalder, Chang and Hotopf!]. The Lancet , Volume 387 , Issue 10028 , 1638 – 1643

Background

Mortality associated with chronic fatigue syndrome is uncertain. We investigated mortality in individuals diagnosed with chronic fatigue syndrome in secondary and tertiary care using data from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) register.

Methods

We calculated standardised mortality ratios (SMRs) for all-cause, suicide-specific, and cancer-specific mortality for a 7-year observation period using the number of deaths observed in SLaM records compared with age-specific and sex-specific mortality statistics for England and Wales. Study participants were included if they had had contact with the chronic fatigue service (referral, discharge, or case note entry) and received a diagnosis of chronic fatigue syndrome.

Findings

We identified 2147 cases of chronic fatigue syndrome from CRIS and 17 deaths from Jan 1, 2007, to Dec 31, 2013. 1533 patients were women of whom 11 died, and 614 were men of whom six died. There was no significant difference in age-standardised and sex-standardised mortality ratios (SMRs) for all-cause mortality (SMR 1·14, 95% CI 0·65–1·85; p=0·67) or cancer-specific mortality (1·39, 0·60–2·73; p=0·45) in patients with chronic fatigue syndrome when compared with the general population in England and Wales. This remained the case when deaths from suicide were removed from the analysis. There was a significant increase in suicide-specific mortality (SMR 6·85, 95% CI 2·22–15·98; p=0·002).

Interpretation

We did not note increased all-cause mortality in people with chronic fatigue syndrome, but our findings show a substantial increase in mortality from suicide. This highlights the need for clinicians to be aware of the increased risk of completed suicide and to assess suicidality adequately in patients with chronic fatigue syndrome.

It was quite a shock then to read this abstract earlier this month which is in dramatic contrast (I don’t have access to the full paper with more in-depth discussion):

Stephanie L. McManimen, Andrew R. Devendorf, Abigail A. Brown, Billie C. Moore, James H. Moore & Leonard A. Jason
Fatigue: Biomedicine, Health & Behavior. Published Online: 12 Oct 2016

Background: There is a dearth of research examining mortality in individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Some studies suggest there is an elevated risk of suicide and earlier mortality compared to national norms. However, findings are inconsistent.

Objective: This study sought to determine if patients are reportedly dying earlier than the overall population from the same cause.

Methods: Family, friends, and caregivers of deceased patients were recruited. This study analyzed data including cause and age of death for 56 individuals.

Results: The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower age of death for suicide (M = 41.3 years) and cancer (M = 66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age].

Conclusions: Results suggest there is an increase in risk for earlier mortality in patients. Due to sample size and over-representation of severely ill patients, the findings should be replicated to determine if the directional differences for suicide and cancer mortality are significantly different from the overall population.

My reaction to this has involved tension between a cool, calm intellectual reading of this abstract, keeping the details in perspective, and an emotionally panicky reaction. In this study people with ME died nearly twenty years early! You don’t need to do any stats calculations to know that is going to be significant. Bizarrely in my emotional reaction I find myself thinking about this in terms of dogs – if I lived this average I would outlive my current dog but probably not another one (ME has taken opportunity to have children from me, so my dog is a blatant child substitute). I occasionally worry about having no pension, but perhaps that could be worry for no reason?

However, something I feel quite strongly about is that we should examine all ME research with the same scrutiny as we would studies coming out of the Oxford school. Our experience is so often undermined that it can be tempting to latch onto anything that demonstrates what we are experiencing is serious after all.

Sadly, I have no doubt that there are people with ME who die younger than they would have if they had avoided ME (including causes other than suicide).

But if we read this abstract as if it has no emotional relevance to us, what does it actually say?

  1. Findings are inconsistent – the literature review is conflicting, so this paper fits into that wider context of conflicting results
  2. The study is looking at if pwme die earlier from the same cause – so not asking if they are direct ME deaths (although I think this is a great angle for various reasons)
  3. Family, friends, and caregivers of deceased patients were recruited: this is the big methodological sticking point for me. I think this was worth doing but it means
    1. They acknowledge that severely ill patients were overrepresented – generally I think only relatives of severely ill patients engage as carers in this sense. It is unlikely that many relatives of people with mild ME could have been reached. Presumably people with mild ME won’t die as early, if the early deaths are related to ME.
    2. All of us still alive aren’t included. Some pwme may be 99 and exceeding average life expectancy but wouldn’t be included.
    3. Is it harder to get a ME/CFS diagnosis when you’re older? Just a suspicion, but I think older people are expected to endure more symptoms as part of old age. If I’m right, this means that older people with CFS/ME diagnosis will likely have been ill a long time (in contrast to some people missing an appropriate diagnosis).
    4. When people who are really old die they are unlikely to have caregivers who would have contributed to the study for various reasons (eg people who know about their ME have also died, they don’t see the death as related to ME etc)
    5. There is no comparison with other conditions and similar lifestyle. This is OK, but it means we can’t tease out the repercussions of a sedentary lifestyle and socioeconomic deprivation. Life expectancy varies quite a bit by neighbourhood and we can’t earn much so I presume we usually live in poorer conditions (not exact equivalent but “Healthy life expectancy (years of life in good health) can be as low as 54.4 years old for women in Manchester, compared to 72.2 years in Richmond upon Thames“). If this is the main cause it requires very different types of intervention.
  4. Sample size was 56. This isn’t crazy low but very different from the 2147 (likely ill defined) in the other study. It does mean that to find such a significant difference in this small sample really does mean that cardiovascular causes of death happened earlier for these people. With a larger replication the cancer and suicide differences may also be significant (feeling foggy – have I written that the right way around?). However, for this particular sample the only specific significant difference is cardiovascular (which wasn’t looked at in the larger study), in other words the cancer and suicide difference could just be chance.

I feel from this all you can say with confidence is that this small group of more severe patients, who have already died, died significantly earlier than the general US population, and those of them who died cardiovascular deaths did so significantly earlier than those in the general population who die cardiovascular related deaths.

By saying this I’m not dissing the researchers, they do include the relevant caveats, but our fears may lead us to overclaim in our minds what this research is saying. Replication may make these results more generalisable, but for the time being I don’t think we can know much about the age at which we will die from this one paper.
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Responding to the loss of specific people

It can be tricky to navigate grief for people with the same condition as us who we have got to know online. Sometimes I feel guilty for feeling grief even, as if that is only for off-line friends and family. I examine my motives and suspect that a large part of my emotional response is selfish, towards fear of my own mortality. I then acknowledge to myself that this is a natural response. It is a different type of process to losing an aunt to a different condition, for example.

pablo-61

Our relationships as pwme and spoonies are hard to pinpoint in a conventional way. Some people we get to know well as friends – we can predict their reactions to things and worry when they aren’t online. They can be our most frequent contacts, yet we wouldn’t recognise them in the street.

Other people are more like acquaintances. For me Justin30 was an acquaintance who had contributed to some of the same threads as me on Phoenix Rising, but when I heard last night that he had died, I did cry briefly with a swift shift to anger at the neglect that is contributing to these deaths. Justin’s was not an expected death. I don’t know the details of what happened, but he actually logged into Phoenix Rising on the day of his death, and had written a post a couple of days before (and seemed to be able to read and write more consistently than me – I’ve been finding PR threads very hard to keep up with). He was very keen to find answers. His family are asking for donations to the Open Medicine Foundation in his memory.

justin

Justin’s parents made these signs for #MillionsMissing in May

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Fear of our own death

Some of us are getting the impression that more of us are dying. Is this true, or are we better connected and now know about ME deaths when they happen? I’m not sure. If there are 17-20 million people with ME worldwide then the number of deaths we hear about are too small to talk about in terms of percentage. But it is not just the case that we are only hearing of people once they have died, it tends to be people who are active online who we hear about. They are people we interact with and then they are gone. This is scary. It is hard for me to completely avoid thoughts such as “could that be me one day?”. If it ever is I trust you will make a noise about it.

Apart from occasionally feeling like I’m going to drown in snot during sick on Sick flu, the only time I’ve come abruptly against an immediate fear of dying was during my temporary paralysis in May. I had no idea what was coming next. I noticed on Holby City (UK medical drama) when one of the nurses had a similar thing happen the medics were scared he was going to die and did lots of tests, so perhaps this wasn’t an irrational fear. For me, I was sent home still unable to move most of my body after only simple blood tests (no lumbar puncture or scans), because I had ME. One of my fears is that some of these deaths are avoidable if ME patients were listened to properly and treated like other patients.
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Fear of not dying

The flipside, which I’m reluctant to even address, is that it is much more common for ME to just go on and on at a level of severity where you would die with other conditions. There are quotes from doctors (Nancy Klimas?) about how ME patients are as sick as end stage AIDS patients but they just carry on living. There is also a bleakness to the politics of ME which strips away many people’s hope and also support from other people. These are the reasons why the suicide rate is higher.

I don’t judge people for resorting to taking their own life, but I am deeply troubled in a different way when I hear of ME related suicides. ME advocacy is moving forward. Biomedical research is moving forward. My feeling is that the pinpointing what is happening in ME is the complex bit – effective treatments likely already exist once we know what to use. Rituximab seems very promising, but there may be other ways to get similar results. The latest metabolic and gut studies are very encouraging. It would be terrible to commit suicide just before a major breakthrough.
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What can help?

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(a bit of ancient comedy for a dark topic!)

For a couple of years I’ve been interested in the idea of philosophy for health: using wisdom from philosophy to deal with the outrageous fortunes of chronic illness. However, people more often say

“that to study philosophy is nothing but to prepare one’s self to die.” Cicero [Tusc., i. 31.]

Even the healthiest person should come to terms with EDS (that’s Everyone Dies Someday, not Ehlers Danlos Syndrome!). Hopefully it is unlikely that anyone reading this will die from ME in the near future, but you will die of something sometime.

  1. We are currently not dead

“Death, therefore, the most awful of evils, is nothing to us, seeing that, when we are, death is not come, and, when death is come, we are not.” Epicurus

An increased awareness of death can also lead to an increased awareness of life. When I faced my (probably unfounded) panic of dying early it also shifted my mental outlook a little. I tend to see my current 4 year relapse as a phase before returning to better health (my ME has been very fluctuating). With ME management there is a constant deferment – we restrict our life now to not feel terrible in two days and to be doing better in two years. We can ace the marshmallow delayed gratification test no trouble (many of us would turn down the marshmallow altogether as the refined sugar could make us feel worse!).

“No man can have a peaceful life who thinks too much about lengthening it … Most men ebb and flow in wretchedness between the fear of death and the hardships of life; they are unwilling to live, and yet they do not know how to die.” Seneca (IV.4 & IV.5)

Something that can help is finding ways to improve quality of life now. Don’t just exist now for a better future. Depending on your current tolerances: look at beautiful things, buy clothes that feel soft or luxurious, watch or listen to comedy, try a new food, listen to amazing music, get a new pillow, find a way to have a massage, get a pet. I’m currently wearing a new, amazingly soft fleece top and my dog is looking at me very calmly. These are simple pleasures happening now. They do not depend on being well or wealthy.

2) Fearing death is futile

“Reflect that the dead suffer no evils, that all those stories which make us dread the nether world are mere fables, that he who dies need fear no darkness, no prison, no blazing streams of fire, no river of Lethe, no judgment seat before which he must appear, and that Death is such utter freedom that he need fear no more despots.” Seneca, Letter to Marcia (XIX)

I don’t know what you put your faith in but it is unusual now to come across anyone with a fear of hell. We tend to think of being dead as either a pleasant, spiritual experience or nothingness. It doesn’t seem rational to fear this (although the nature of fear is often irrational I know).

3) Contemplate other endings

“All things are changing: and you yourself are in continuous mutation and in a manner in continuous destruction, and the whole universe, too” Marcus Aurelius (Meditations IX.19)

I’m not entirely convinced this helps, it probably pablo-67depends on your personality, but try out gaining a wider perspective on death and balance it with a sense of purpose for your small role in the unfolding universe. Everything changes. Famous people die too. Eventually the world itself will end, but in the meantime we have been a part of this amazing world.

 

 

 

 


Please sign the #stopGET petitions this is important to me (pwme report harm from graded exercise therapy, yet trials continue including on children):

UK parliamentary petition: aiming for 10,000 to get government response, currently on 3,306 signatures

Global support petition: currently on 3913 signatures, can you help get this over 4000?

Australian medics education research petition (everyone can sign): this is new and currently on 287 signatures

Why #stopGET? further info on www.stopGET.org

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If you liked this you might like:

My first post about wisdom for adversity (there are others too see Stoicism category)

The one with Christian meditations for the chronically ill (and struggling)

The one with 10 insights on life from living with ME

The one discussing a crisis of knowing in ME


Further reading:

Dying (everyday) with dignity: lessons from Stoicism

Epicurus Menoeceus

THAT TO STUDY PHILOSOPY IS TO LEARN TO DIE
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19 thoughts on “Learning how to die

  1. I love to read your thoughts. I liked the reference to the marshmallow test. I am now going to your “home hacking blood glucose” 😉 _ I want to ace the marshmallow test 😎 Yay !! I love that vision. Thx Jenny. I really appreciate your blog. Cheers.

    Liked by 1 person

  2. Thank you for addressing this topic.
    One of my closest online friends with ME died very recently at the age of 48. I cannot help but feel that without ME she stood a good chance of living far longer than that. Yes, her ME was severe, but that severity had been increasing over the twenty or so years she’d had the illness, which is a risk for any of us.
    Like so many people with ME, her new, additional and very disabling condition was diagnosed far too late and she struggled to cope with the treatments which have good outcomes for people who are otherwise healthy. There can be no question that ME contributed to her premature death, even if it was not the immediate cause.
    I endorse your suggestion that now is a time of increasing hope.
    I wish my friend had been able to hang in there for a few more years.
    Yet for her, every day had become a desperate challenge and it is a relief in a way to know she is now at peace.

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    • Penelope, I’m sorry for your loss. Do you find people recognise your grief from losing an online friend?

      There should be a recognised term such as ‘ME related death’. Additional problems being diagnosed too late is a danger for us too. Every new symptom seems to be dismissed as ME in my experience.

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      • I refer to her simply as “my friend” and have experienced no discrimination on the grounds of it being ‘only’ an online relationship.
        Having mutual online friends has helped, as has the fact that one of my childhood friends is also a mutual online friend, so we cry together.
        Fortunately her son recognised the value of her online friendships and kept us informed, including us in the funeral information, which allowed for a shared international candlelight period of silence.

        Liked by 1 person

    • So sorry to hear about your friend Penelope. So sad that she suffered so much. I imagine this type of ME related -death is not included in the stats but one I fear is a likely scenario.

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  3. Great post on a delicate topic. Love to Justin, his family and friends, and others with ME who have died. My feeling is that these studies and Jason et al’s 2006 “Causes of Death Among Patients With Chronic Fatigue Syndrome” are just the very first forays into exploring mortality in ME, and further research is needed before we really understand the numbers we’re dealing with.

    I think that the comparable numbers between the two studies are the numbers of deaths, i.e. 56 in McManimen et al and 17 in Roberts, Wessely, Chalder, Chang & Hotopf. Roberts, Wessely, Chalder et al acknowledge that their numbers are low and there are many other problems with it, not least the usual definition problem where only half of their population had Fukuda-defined CFS. Here’s a critique https://jcoynester.wordpress.com/2016/02/16/bad-stats-non-sequitur-conclusions-in-lancet-chronic-fatigue-syndromesuicide-study/. It’s the sample of dead people that needs a high number in order to make meaningful comparisons with population norms, not the sample of people with CFS. I think. So some gigantic studies in different geographic areas will be needed, and there will still be issues with ME/CFS just not being considered a factor relevant to death for many years.

    I do think it’s worth bearing in mind that we may be at risk for an earlier death from some non-ME causes, because there may be things some of us can do to reduce our risk factors for death from heart disease, cancer etc in terms of diet, stress management, improving quality of life*. (NOT exercise!) I happened to be reading the book “How Not to Die” by Dr Michael Greger when the latest study came through, which seemed like a clanger from the universe.

    *I’m well aware that the most severe, who I imagine are most at risk, are operating in survival mode and that these things will not be feasible or appropriate. I’m severe, housebound but not bedbound, although lying down most of day, and I try to keep tweaking the things I can tweak that are relevant to heart disease, cancer and happiness. Am relying on research to work out ME. Effective treatments and basic respect would go a long way towards reducing mortality from suicide, at the very least.

    I think some of the shock comes from having a serious disease that just hasn’t been acknowledged as such outside of the relatively small pool of ME biomedical researchers. In a way, I think some of us have been sucked in by the rhetoric and are shocked to hear we might die earlier. But most diseases affect mortality in some way, either by putting you at greater risk for other co-morbidities or killing you directly. When we have gigantic studies we’ll start being able to tease this out more meaningfully for ME.

    More research into pathophysiology and medical treatments, please.

    Liked by 1 person

    • Thanks K.

      I think you’re right about looking out for simple things to reduce the risk of cardiovascular problems and cancer. For example, from my genetic results I spotted that one of my cardiovascular risks can be completely reversed by eating some raw fruit and veg regularly. Over the summer I had salad everyday in response, although I’m slipping with this now I want hot food.

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  4. There was that other ME and death study done via the ME/CFS memorium list which if Im remembering correctly came up with the results that we are dying 17 years earlier (unless I got that 17years from yet another study on this).

    Unfortunately none of those 3 studies have been what I’d call good studies which would given more of an accurate representation of just how many “ME” patients are dying as an outcome of this.

    I’d really like to see two death studies done, one looking at a a large group of at least CCC defined or Internationally ME defined patients over say a 10 year period compared with age, sex, locational matched control group. And I’d also like to see a group of severe ME people also looked at over that time period to get a better view of things as this is the group which Id think would be more at risk of death esp of ME complications.

    An issue we also have is some of us are suiciding not out of depression but out of “fear of continuing to live” and having to struggle like we are now every single day and what we will keep experiencing. Many of our community are experiencing ongoing abuse.. abuse of families, abuse of drs etc just cause they have a little understood medical condition. It is hard to improve quality of life a lot when a person is homebound and abused.

    Suicide hotlines in these cases are little help to us as they are used to those wanting to suicide being actually depressed and the counselors on other end have no understanding of ME so end up often saying things which make the person feel even worst about their life eg I’ve rang one only to be told to go and visit friends or go out for a walk.. of cause a severe ME housebound patient can do none of these things

    The things I do to actually improve my life quality are actually often attacked by others eg being housebound and not able to get out and visit people etc, I got into fostering a cat or two for rescue agency. Ive since given up on fostering due to my state of health but did adopt one cat who would of been hard to ever rehome. Im now getting critisized for having a cat, the cat which keeps me from crying at night from loniless.

    The fact I get asthma every day and during the night from the dust due to me unable to clean my house, my public advocate (who is supposed to be helping me) though has choosen to blame my cat and told me I should get rid of it. And when Ive got out of bed to do things to try to put more joy in my life or to improve something in my home, once again Im critisized as Im told I should of used that time to try to clean the house etc.

    Ive got an old lounge I really dont like much so have been trying to recover it so I can enjoy it, being homebound, what’s in ones home becomes more important (recovering it, that’s a sitting job) but its quite likely Im going to be critisized for doing this and not spending the time I’ve used to do this on trying to clean house..

    I hate to say this but others who are supposed to be helping us and who we need in our lifes for things can be making our lives a nightmare and we cant do nothing about it as hardly anyone out there except others with this illness understand. (my latest advocate even has told me to get rid of my piano though its not in the way of anything and in a reclined recess in the wall!!. (and I need this advocate to try to help me get more support services)

    I cant currently play it but its like a symbol of hope for me, something to hold in mind that one day I may be able to play it well again, I loved my music. Ive got rid of things like my horse and riding gear and of cause my car but there is hope i may be able to tinker on a piano at times.

    My life is scary, I feel like Im being left with less and less and at risk of crashing again like I have done in the past which made me completely bedridden unable most of time to walk to a loo for 9mths. I dont fear death.. I fear life, my life is very hard and scary (like you Ive experienced paralyses at times.. paralyses while all alone. Ive also been left collapsed on the floor several times all night unable to get up again or crawl). How many of us are suiciding due to fear of living?

    Unfortuantely I dont have a hope that there is a drug already out there for us either unless its ampligen or that other which kills the B cells which I do hold some hope in as my logic tells me that if there was something which was going to cure a great number of us, that we’d already probably would of heard about it eg someone with ME/CFS gets something else and is put on a drug for that something else which cures them, most involved in our communities would come back to tell us they are now cured of the ME/CFS which they attribute to a drug.

    sorry my post is dismal, its how Im feeling right now. Im full of concern.

    I havent been able to even get shopping now in over 3 weeks and are out of food such as all my vegetables, milk etc for a while now and its upsetting going hungry… but have such limited help today Im tossing up between a choice of using someone who’s coming for a short time today to take me shopping and the food I desperately need or to help me find and photocopy medical notes the advocate needs to try to apply for more support for me which I desperately need.

    What a choice to have to choose between these two things, my whole life is like this, having to choose between something which is essential I have to do with another thing which is essential which has to be done while also trying to get my life quality also up and add more joy into it.

    anyway I can quite understand why some of our community is choosing death when many of us are having lives which arent conductive to life and we have to keep watching ourselves slowly decline as we are being forced to do more then our bodies should be doing. In my case I believe Im going to be just left to die due to family not able to support me due to their own health issues and our government here in Australia not even including ME/CFS into our new disability scheme they are currently laying out.

    guess I’d best go and ring that advocate im having to deal with now and let him know that if Im to do what he wants, I’ll be without usual food essentials (no milk, or veg) for yet another week as I wont have anyone else here to help me again till next week.

    I feel so sorry for all those having to end their lives prematurely due to how our illness is getting treated. Wanting to live but life is making it impossible to keep living.

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    • Tanya I’m sorry that you’re in such dire circumstances and that you’re not the only one. On the more practical side, I’m guessing that you don’t have access to supermarket delivery yet? That’s a mini revolution for spoonies here. Recently I struggled to answer the door though and just said to the delivery guy “I’m about to faint” he let me lie down and unpacked all the food onto the counter before letting himself out 🙂 There’s no way I’d have been well enough to go and get the shopping.

      I remember there being another study and people talking about life expectancy being late 60s, can’t remember specifics though. You’re right there needs to be a longitudinal, prospective study on a well defined group of patients before we can make much sense of it.

      I also get the sense that ME suicides aren’t due to severe depression but severe neglect (of care, health provision, research). It is more like euthanasia, a calculated choice, but more tragic because for most (we think) ME isn’t terminal and a breakthrough could be around the corner. What keeps me going in the here and now is trying to improve my quality of life however I can and campaigning for a different future; for the medium term I have this optimistic expectation that I will improve, and in the longer term I believe there will be treatment that puts me into remission. The factual accuracy of this isn’t so important here, the important thing is that it gives me enough hope to keep going.

      Keep your cat and your piano!

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    • Definiitely Keep your cat and your piano! It makes me very angry that you can’t access the services you need to live in a rch counry like ours.
      You’re too sick to manage this alone and yet here you are with the courage of 100 people writing this. Hugs are all.I can offer until things improve for you. Hopefully the NDIS will cater for ME better soon. There are people working on it so don’t give up.

      Liked by 1 person

  5. Thanks for writing on a very important topic. I was at risk of suicide a few years ago – I was so ill and so restricted in what I could do, and I didn’t see any way for my life to change. Fortunately I have been in recovery and I’ve learnt to focus on the small and satisfying things – my dog’s soft snores, a nice warm wheatbag on my feet, really lovely food cooked by my finace.

    It’s interesting about the finding of earlier death in ME – and I think you have raised an excellent point – so often doctors assume that new symptoms are part of the ME, and don’t investigate properly. Just one more reason to be a relentless advocate for your own welfare when visiting doctors – and a tragic irony that doing that is so exhausting.

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    • Claire I’m glad that you’re still with us and doing better.

      Another issue I think in terms of doctors missing other things is that they assume people will keep coming back if still ill. At least with the NhS there seems to be a wait and see approach, without explicitly saying when we should go back. When dealing with ME patients they really need to factor in that we’ll have a low expectation of what they can do, each appointment might take a week’s energy and we may be nervous of picking up infections. I’ve had a chesty cough for several weeks but in my experience going to the doctor at this time of year will mean I just get a new virus to take home! On twitter yesterday someone joked that it isn’t a coincidence that the word disappointment contains the word appointment.

      Liked by 1 person

  6. Here’s another study on the topic:
    Mortality in a cohort of chronically fatigued patients.

    Psychol Med. 2006 Sep;36(9):1301-6.

    Smith WR1, Noonan C, Buchwald D.

    Abstract

    BACKGROUND:
    Comprehensive studies of mortality among patients with chronic fatigue (CF) and chronic fatigue syndrome (CFS) have not been published, but several sources suggest that CFS is associated with an elevated risk for suicide.

    METHOD:
    Data on 1201 chronically fatigued patients followed in a university-affiliated tertiary-care clinic for up to 14 years were submitted to the Center for Disease Control and Prevention (CDC) National Death Index (NDI) to evaluate all-cause and suicide-caused death rates against standardized mortality rates (SMRs). We used Life Table Analysis to examine the influence of sex and diagnoses of CFS and depression.

    RESULTS:
    All-cause mortality in chronically fatigued patients was no higher than expected, but suicide-caused death rates were more than eight times higher than in the US general population. The significant elevation in the SMR of suicide was restricted to those who did not meet criteria for CFS [SMR(CF)=14.2, 95% confidence interval (CI) 5.7-29.3 versus SMR(CFS)=3.6, 95% CI 0.4-12.9]. Among chronically fatigued patients who did not meet CFS criteria, those with a lifetime history of major depression (MD) had higher suicide-caused death rates than among their non-depressed counterparts (SMR(MD)=19.1, 95% CI 7.0-41.5 versus SMR(NMD)=5.6, 95% CI 0.1-31.4), although the difference was not significant.

    CONCLUSIONS:
    CFS does not appear to be associated with increased all-cause mortality or suicide rates. Clinicians, however, should carefully evaluate patients with CF for depression and suicidality.

    PMID: 16893495 DOI: 10.1017/S0033291706007975
    [PubMed – indexed for MEDLINE]

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  7. Good thoughts but you missed one that may give a bit more information. The National CFIDS Foundation has had an ongoing Memorial List for decades and lists ages of each of the deceassed. Take a look at http://www.ncf-net.org and then click onto the Memorial List. Their newsletter has the newest additions with each issue.
    Victoria

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  8. This quote was on the Lewis episode I’m watching and seems relevant to ME though I doubt any of us can maintain this attitude consistently:

    “In any case, what is suffering? I am not afraid of it, even though it be numberless. Now I am not afraid, though before I was… And it seems to me that there is so much of this strength in me now that I shall vanquish everything, all of the suffering, only so that I may keep saying to myself constantly: ‘I am!’ I may endure a thousand torments – yet I am, I may writhe under torture – but I am! I may sit in a tower, but I exist, I can see the sun, but even if I cannot see the sun, I know that it exists. And to know that the sun is there – that is already the whole of life.” Dostoyevsky

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