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.

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):

Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome Stephanie L. McManimen, Andrew R. Devendorf, Abigail A. Brown, Billie C. Moore, James H. Moore & Leonard A. Jason

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?

Findings are inconsistent – the literature review is conflicting, so this paper fits into that wider context of conflicting results 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) 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 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. All of us still alive aren’t included. Some pwme may be 99 and exceeding average life expectancy but wouldn’t be included. 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). 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) 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. 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.

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.

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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?

(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.

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 depends 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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