Answers From CFS Specialist

This isn’t finished but I’m posting it anyway because life is currently unbearable and, I don’t know, maybe communication or the deluson of communication formed by posting this into the ether is better than nothing. So these are the things I was discussing with the CFS doctor in February (before the hospital admission was cancelled) and haven’t been arsed to write up properly till now.

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1)  Is there an omega point of CFS? (Or do only fatal diseases have an omega point?) I.e., can I die of exhaustion? What is the worst that can happen?

Some people do seem to achieve this, and kudos to them, but in general no, you can’t. Which I knew, but I was sniffing around the question of how much harm is the tiredness really doing me, then; is it damaging me, and why can’t I just ignore it – all of it?  You might as well ask why can’t anyone ignore their tiredness, healthy people too, given that science is becoming increasingly aware that fatigue is in the brain, it is a prophylactic mechanism. Your body chooses to shut down before (quite a long time before) poverty of resources compels it to shut down.  But I think the answer is that it is, still, shutting down, neurologically/phenomenonononologically if not metabolically.  And it’s bloody convincing: if you get tired in the Matrix you get tired in real life.  I think there are ways to overcome this sensation, provided there is no neurological damage, but they are not surface interventions: you have to take drugs or be like a yogi or something.  Anyway, to get back to the main question, I think the doctor said that the worst fate in CFS was you’d get to a point of collapse where you wouldn’t die but nor would you be very likely to get up/move/recover.  This seems the likely result of the hospital trip.

2) The CFS sufferers who are completely immobile and spend their lives fed through a tube and drained through a catheter: how did they get to that point?  Was it, for instance, by making wildly overambitious trips to the National Hospital for Neuroscience and Neurosurgery?

This caused confusion because by ‘fed through a tube’ I meant too weak to lift cutlery or chew (this is not unheard of), but he meant, I think, people who are unable to eat due to phobias or maybe psychogenic food intolerances: he put it as “severe emotional problems”.  But I think, essentially, yes, if I wanted to get myself to this point, this would be one of the ways to do it.

3)  Is what Vicki Cook [CFS recoveree and coach] said true about people without carers don’t get bedbound?

This is complicated, but the gist of his reply was, you keep what you aren’t prepared to let go of – your non-negotiables – but other stuff falls by the wayside.  So if you are absolutely unable or refusing to become bedbound, for instance, then that’s what will go last, but meanwhile other areas of your life will lapse, like tidiness or socialising or bursting into song every morning with the dawn chorus.  Probably the advance of the illness is enabled or limited by just what and how much you’re prepared to let slide.

I’m tempted to ask what happens if you’re not prepared to let anything slide, but I think it may be a nonsense question, because nobody does everything all the time, and nobody leads a totally facsimilic existence in which they maintain not only everything they do but also everything they think and experience day in and out.  (And if they did, they wouldn’t have developed CFS, because the increase or incursion of fatigue into that existence is itself a decline, i.e. a decline of the tendency not to feel tired.)  And more to the point, CFS/ME makes inroads into those aspects of yourself over which you have no direct control: urges, implulses, spontaneity and so on. So to cut long story short: you do some things less than others, and those things atrophy.  As I write this it seems like an absurdly esoteric discussion or the kind of stoned revelation that is simply sloughing the skin off things you already knew, but the experience of CFS/ME does lend itself to these existential hair-splittings, because it is so much about perception and the material effects of perception.

(Short answer: No.  Or perhaps Maybe.)

4)  Is ME vs CFS a genuine distinction? (I was looking at the Hummingbird Society’s ME vs CFS chart, which I suspect is probably bollocks, at http://www.hfme.org/comparisonchart.htm)

For the purposes of this blog, or at least until I contradict myself, I am making the following distinction:

CFS Persistent fatigue and fatigability, not relieved by rest and with no readily identifiable cause, could be a load of obscure and complicated reasons.

ME Persistent fatigue and fatigability, not relieved by rest and of neurological cause, i.e., to cut a long story short, extreme tiredness for no other reason than that your brain is telling you that you’re extremely tired.  This may result in subsequent biological inflammations and dysfunctions and vicious circles all over the place and thus make it very difficult to distinguish symptoms from causes.  I think this difficulty is a key aspect of M.E..  But then I am prone to thinking in this way anyway, or as my occupational therapist put it, “You really love your semantics don’t you?”

Further questions I might write up properly later IAIAICBA:
Does mitochondrial dysfunction always entail delayed fatigue?/
Can the NHNN investigate the cause of my exercise intolerance?/
Would I recover if I just stopped spending all day looking at computer screens?

(No/No/No)

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Going To The Hospital

My friend Imogen wanted me to use this blog to tell you all that I discovered that the collective noun for a group of nuns is a superfluity, and she is right that this is a wonderful fact, but having broadcast it I will now turn my attention to my main subject, which is my forthcoming trip to hospital.

Sometime in the new year I’ll be going into the National Hospital for Neurology and Neurosurgery for some tests. It’s a precaution after the weird neurological events (they look like grand mal seizures, which is probably exactly what they are) which I experienced over the summer, and the lovely neurologist I saw in September was moved by my plight and seemed solicitous of doing tests as untraumatically as possible for me.  At first I resisted because I thought the exertion involved would be disastrous to my health, however easy for me we manage to make things. But then I thought fuck it, there’s maybe 5% chance they’ll find something illuminating, I’ve run out of other ideas, plus I’m sort of past caring, so I’m spending my gambling winnings on spry second-hand clothes and a wheelchair and going out in a sputter of glory.

I like hospitals and I’m looking forward to the adventure, even if turns out to be an adventure in suffering. I’m not thinking too much about the possible consequences.  My expectations are sometimes (sometimes) wrong where middle-size exertions are concerned – I reckon on exhaustion yet recover surprisingly quickly. Sometimes. However, my experience hitherto with extremely tiring events way beyond my limits (emergency dentistry etc.) is that they are always, always long-term catastrophic, causing a permanent reduction in my already miniscule abilities.  All the extremely tiring events beyond my limits which I’ve undergone so far will be dwarfed by this enterprise, so it may well be the functional equivalent of suicide – I won’t die, but I will be completely disabled and perhaps spend my future being fed through a tube and drained through a catheter: some CFS patients do get that bad and this is may be how.

But it’s also an opportunity: firstly to examine my brain and muscles while exhausted, which may or may not be illuminating, but also it may address the question I’ve often wondered about, of whether there is an omega point to CFS – that is, what is the worst that can happen?  Can I die of exhaustion, for instance, or are my symptoms a bluff, perpetrated on me by my body, and I always blink too soon? If morbid tiredness is the enemy but the consequence is only further morbid tiredness, then what is there really to fear? There’s evidence that even marathon runners’ tiredness is so-called central fatigue, originating from their brains rather than the exhaustion of cellular energy capabilities. My hope, born of desperation, is that the hospital trip will as a side effect give me some clues to this conundrum of fatigue – by not tiring me as much as I expected, perhaps, or maybe by manifesting utterly heinous tiredness that subsequently turns out not to finish me. Or maybe by tiring me to such a ridiculous degree that the plastic ruler of credibility* snaps, and somewhere relevant inside me it clicks that my tiredness is not proportional to my activities. That last one is a long-held pipe dream of mine but I’ve never heard of such a scheme working, or even being properly attempted – you’d probably collapse long before you got anywhere.

Also, there is in fact increasing evidence of mitochondrial dysfunction in CFS – that is, that problems in the fundamentals of cellular energy production are responsible for what are actually quite distinctive symptoms and responses to exertion. I have test results of my own showing at least one type of mitochondrial dysfunction which I can’t explain away as a symptom of chronic immobility rather than a cause, besides which there are well-documented Bad Consequences when even healthy people tax their bodies beyond their capabilities.  Nor would I recommend powering through and ignoring symptoms to this insane degree to anyone else with CFS, so the only hope I have that this insanely long shot might help me is, um, simply that I’m open to the possibility that it might, though this open-mindedness has never hitherto had any perceptible effect of my symptoms.  But then shedloads of mitochondrial supplements didn’t help either. Brain or mitochondria, there’s no conclusive evidence either way – assuming that the distinction even matters, of course. If you die in the Matrix you die in real life.

I will be posting an announcement or disclaimer on Facebook before I go in case I’m completely incapable of typing, and/or everything, when I come back. This post is the long version of that. More importantly, though, and this is the original reason for this blog, I want to thank everyone for their friendship over the years – for your kindnesses, your sending of treats and trifles, your making me laugh like a braying seal and think like a human being; for liking my posts and cooing over my gratuitous pet photos; for your forgiveness of my obsessive demands, my frequent gracelessness, my, um, somewhat unpolished approach towards the acquisition of physical affection, and for other demerits too numerous to enumerate** ; for the people (and you probably don’t know who you are, and that’s part of your appeal) whose very existence it gives me joy to contemplate. Thank you all. You’re one thing in my life I’m always able to tell the mental health questionnaires I’m happy about. I’ll miss you when I’m a tormented vegetable. I miss you already. I wish I knew you better.

* [metaphor embarrassment]

** For a full and up-to-date list of my personality defects please see my dating profiles.