ME FOR DUMBINOS

ME FOR DUMBINOS

A Simple Model

Just Feeling Ill

I’m in my sixth year of ME, and they’ve turned up the pain again.

This time it’s come with a sore throat and squeaky voice, but it could be any number of things that set it off... and it is so hard to describe it to anyone who isn’t there already, never mind explain it in simple terms.

My favourite way of describing it is that it’s like flu without the temperature: pain and tenderness in muscles, joints, and what used to be called sinews (I like that word sinews), a ‘lead suit’ feeling of weakness in the limbs, grogginess, particularly on waking up, like a hangover, and a swirling in the head, like being under the breakers on a shingle beach. A feeling that I can’t get going - step on the gas and there’s nothing there. Oh, and dreams, yes, fever-like dreams.

But it could be likened to any number of illnesses that I’ve had since childhood - a bit like measles without the spots, chicken pox without the scabs, a gut virus without the nasty bits, even a heavy cold without the runny nose ...they’ve all got a few symptoms in common, summed up basically as ‘feeling ill’.

So that’s about the best I can do sometimes, to describe it to anyone; I... ‘Just Feel Ill’.

I want to park that idea for a moment, and I also promise I’ll come back to who ‘they’ are in the opening sentence .

The F-word

One word you may have noticed that I have completely missed out in the description is ‘Fatigue’.

I met the word very early on in my medical progression:

‘Do you have Fatigue?’,

‘Well, I guess...’, ‘

‘OK, make a note: patient has Fatigue,’

‘Well, sort of, but...’

‘Yes, we call this Chronic Fatigue Syndrome.’

‘Well, Ok, I suppose you could call it fatigue then, but...’

I soon realised that what the medics called ‘fatigue’ was actually shorthand for all the symptoms that I described above - the pain, lack of strength, lack of stamina, whirly head and so on. Which would be OK, except that it already means something quite different.

‘Fatigue’ usually means a condition produced by overuse or over-stress. Sports scientists know a lot about this. In muscles the pain can be produced by toxin (eg lactic acid) build-up. The weakness can be caused by fuel and/or other reserves depleting. The symptoms in a tired athlete are pain and weakness. The diagnosis is fatigue. The cure would be rest, restoring sugars, electrolytes and so on.

So, to go back to ME. Are the medics diagnosing fatigue - ie overuse producing toxin build-up and/or depletion of fuel? I think not. And yet, the whole profession seems inordinately fond of this word. And it seems to me that it pervades much of the current thinking about the condition.

One of the first things I was told was that rest was a key element in my recovery. That it would restore my energy, and the ‘whatever it is’ that I had run out of. I needed to be very careful not to do too much as I would soon run out of this ‘whatever it is’ stuff again.

Sure enough, that was exactly what seemed to be happening. I overdid it. I suffered. I recovered...well, a bit. So, fatigue, right? Erm, not exactly. The odd thing about the suffering part was that there always seemed to be a delay in its appearance. And it followed a predictable pattern:

Go for half hour walk.

Immediately feel like a rest, but soon recover

12 hours later: start to get some muscle pain

24 hours later : really feel weak and need to go to bed. Much pain.

36 hours later: really groggy on waking. Try to get up: pain and weakness. Stay in bed.

48-60 hours later: at some point, suddenly start to feel better. Pain goes quite quickly, weakness slower.

72 hours later: OK again (within limits).

Now, instead of that overenthusiastic walk, a number of things could trigger it: a walk down the road, a bump on the head, a heavy lift, a heated conversation, a cold or sore throat - even a hot curry on one occasion. But the delay was always there; sometimes shorter than others, but always there.

So although the symptoms felt the same as those of ‘fatigue’ in the overuse sense, this was clearly something different. Of course I don’t know - and I don’t think anyone does know - whether the processes in my muscles going on now, as I lie in bed with my aches and pains, are the same as those going on in those Olympic athletes in full training at the moment. If they are, I’ll consider using the F-word. If not, I think it should be deleted from the script.

We sufferers may or may not be running out of ‘whatever it is’. But I don’t think we should pre-judge the issue.

A Very Strange Infection

There’s been a lot written about ME. Boy, is there a lot. And I’ve read a fair smattering of it, and to be honest, feel a bit like TS Eliot: ‘And the end of all our exploring. Will be to arrive where we started.’

I think I had heard that it was ‘flu without the flu’ well before I came down with it. I had more or less forgotten this rather neat description when started reading about the history and conflicts surrounding ME. Especially the conflict.

One faction argues, persuasively, that ME is an infectious disease. It certainly behaved like one when it was first noticed, working its way through small communities, flaring up, dying down. It often comes just after an identifiable infection - that’s why it’s called ‘Post-Viral’ whatever. And it does feel very like an infection. But trying to find an infectious microbe that caused it, or even something wrong with the immune system...well, that’s where it all starts to get very heated.

Another faction argues, equally persuasively, that it is, basically, hysteria. Stress of one sort or another is often a factor in the life of ME sufferers before they are diagnosed. And mental stress, as has been shown since the days of Freud, will often produce physical ailments without any demonstrable cause. Exhaustive studies have failed to come up with an infective organism, or a biological malfunction that could cause ME. So we are left with a psychological cause. And, as for the early clusters, well, hysteria can be just as infectious as a microbe.

So, basically then, it’s Pasteur v. Freud, pistols at dawn, and the next dawn, and the next...

Model v Model

So, come on then, which one do I support? Got to be one or the other, so best come clean right now!

Erm, sorry, no, not yet anyway. But I can at least tell you why. Look, I’m a biologist by training. Used to teach the stuff. And I know how it works: whatever it is, you have to draw a flow-chart on the blackboard (Yes, that dates me..).

You’ve seen them in ME books, and I tried doing one of my own as I read up on it. One box for the brain, one for the immune system, one for the body periphery. Draw influences: stress, viruses as arrows. Then results (or ‘outcomes’ as we have to call them now): pain, weakness, lack of stamina. Then feedbacks: pain leads to more stress which leads to... and so on.

Now, have you ever seen a Jackson-Pollock canvas? Well, it wasn’t quite like that - it reminded me more of when I used to draw battles: Here’s the cannons - smash! Here’s the rifles - bang, bang!. Here go the arrows - whoosh! The fun was in actually drawing them, not the end result, which resembled a big dish of spaghetti bolognese, in both cases.

So it became obvious to me that I wasn’t going to come up with even a basic understanding of the illness I had like that. Admittedly there are some excellent and very ingenious versions in books, with bits of the brain, various nerves and glands, and lots of arrows. But they always seemed rather oversimplified to me as a model, and yet too involved as a basic explanation of something that seemed to stem from one basic cause. And if it was that easy to model, how come nobody can agree even where to start to look for a mechanism yet?

But psychiatry didn’t seem to offer much of a model either. OK, I may get stressed, but is my brain really then making an appointment in its diary to react to that stress 24 to 36 hours later? And that pain doesn’t seem imaginary - bits of me hurt when I press them, respond to anti-inflammatories, and don’t ask me what happens if I forget to take my painkillers.

So my best model at the moment for the last couple of years has been, erm, demons. Please bear with me (and them later on). These demons (which I alluded to right at the start and yes it was a misquote from ‘Cuckoo’s Nest’) are my hypothetical culprits. They do take a while to react, but once they are excited, man do they get going: stirring up pain, stopping the muscles working, whirling my head round, rattling the gravel. They have their 2-day shindig, then fairly suddenly go quiet again.

Ok, so does it sound like I’ve come down pretty firmly on the side of the Freud faction, then? After all, imagined demons of one sort or another are all over psychiatry and even some psychology textbooks. Well sorry Freud, no: I think these demons are real, and that, if we start looking, we’ll find them.

Or, better still, let’s ask them!

Demonology Part 1

• Demon - OK, let’s go back to square one.

Me: What, the flu-like symptoms: pain, grogginess...?

• No, you’re trying to diagnose it

So, the actual symptoms, then?

• No, before that. You are still trying to analyse them.

The original virus, then?

• No, after that. When you thought you’d recovered. Then what happened?

I kept on waking up feeling groggy. I felt stiff. I got pain after a walk. My neck glands swelled up.

• So, what did you think?

I’ve got flu, was the main thing. Eventually I went to a doctor.

• And what did you tell him?

Her, in fact. I told her I feel ill, and...

• OK, hold it right there. Say that again.

What, ‘I told her I feel ill’?

• Yes, and this ‘I feel ill’, was it anything like you’ve felt before?

Yes, often in fact. As I said, like flu.

• And? Anything else?

Well, now you mention it, without the temperature, it was quite like a lot of illnesses I’ve had. I remember measles, german measles, chicken pox - that was horribly itchy - that gut infection in Greece. They all had some similarities: aches and pains, bad head, a weak feeling. So what? Viruses are all doing some similar things and some different things.

• But, stop and think for a minute. Why should all these very different viruses have any similarities at all? Particularly in the way they make you feel. Think, man, what’s the common factor?

Dunno, er, well if it’s not the viruses, I guess it must be me, so...

• Feeling ill is a bummer isn’t it?

Tell me about it. I’ve never understood how a tiny virus can get in and attack you everywhere at once. You just feel so awful all over.

• Listen to yourself...

What? Oh, I get it - it’s my reaction to the virus that makes me feel awful. Not just the virus on its own. But, hang on, I can understand the need to get the body’s defences going when a virus comes in. Like white blood cell production going into overdrive. But why on earth does it need to make you feel so dreadful?

• What if I tell you it needn’t?

Needn’t what?

• Make you feel dreadful. What if I told you that it was us demons doing it?

But why would you do that? Are you there to be spiteful or what? And how come evolution hasn’t noticed you? Cavemen feeling crap don’t make the best hunters you know.

• No, but they do survive if they are sick. What is the first thing you do when you feel ill - apart from complain to everybody about it?

Go and lie down until I feel better I guess.

• So did Og the caveman. And his immune system had more energy to fight the infection. But cousin Gog just carried on hunting - and died of flu a few days later.

So, you’re saying that you demons making us feel ill are actually doing something useful?

• Biologically essential. We are your early warning system. You can’t always detect when you are ill, especially in the early stages. But your very smart immune system can. And when it detects a threat, it tells us to get busy - telling you that you are ill, and to go and rest. And the best way to tell you to rest is to feel like fatigue.

Fatigue? What, aches and pains, lead overcoat...

• All to make Og the Caveman think he has fatigue. You could call it mock-fatigue if you like. Whatever, it’s a trick we play on you for your own good.

But it’s gone wrong now.

• - Yes, it has. We’re active all the time now. I’ll tell you why in a bit, but I think you need a rest now. Hey demons, time to wake up again.....

Demonology Part 2

Finished yet?

• No, but we’ll give it a rest for a bit. Hope you had plenty of painkillers in stock. Anyway, about going wrong. Thing is, you’ve been ignoring us.

I wish.

• Not now, but before. Remember what you used to do when you were ill?

Keep taking the tablets and carry on?

• Correctamundo. We’re trying to tell you something, and it’s important, and you are trying not to listen. So what can a demon do? What choice do we have?

You’ve got to talk louder?

• Shout, more like. So if the pain and stuff doesn’t work, we go to level two. We try to disable you.

What, totally paralyse me?

• No, that would be silly. And if a bear decided to get into Og’s cave, somewhat dysfunctional. No, just mess enough with your ‘fight or flight’ response so you can only use it in a real emergency.

So, this is the ‘step on the gas and there’s nothing there’ feeling?

• Yes, and you’ll want to avoid any low-level stress. It really makes you feel all tense and sweaty. And all the other symptoms worse. That’s us telling you we really don’t like stress

Just pull up the duvet today then.

• Ideally. But that’s exactly what you didn’t do. Especially right after your operation, when your body was already busy repairing itself. That’s what they call an ‘insult’. And, yes, we felt insulted.

OK, I get it, it’s all my fault - and then you go to level three?

• Trouble is, there is no level three. It just turns into a shouting match from then on in. We shout go and rest, you shout the hell with that, and it just goes on.

So how does it end?

• Sorry?

How does the shouting match stop? Does one of us give up?

• You still haven’t got it, have you. The point is that the shouting match doesn’t stop. And it hasn’t stopped. We are still shouting, telling you to rest.

Yes, dumbo, well I’m resting now, so ...

• But nobody has told us. And that, dumbino, is the point. We’ve been so used to going on giving you mock-fatigue and other symptoms and you ignoring them and going on doing your stuff that we’ve, er, kind of, forgotten how to stop.

But that would be too simple! Surely, then, all we have to do is to work out a way of giving you demons the message that OK, it’s all right, you can stop producing the ‘I feel ill’ symptoms now.

• Yep, it’s that easy - but you’ve got to find us first! Hee hee - Ok demons, one more go before bedtime...

Demonology Part 3

• Hey, dumbino, you still listening?

I get a choice?

• Course not. Till someone finds us, that is. But to be fair, there’s lots of ways of getting us to stop that don’t involve finding us.

Such as?

• Well, talking, believe it or not.

Believe me, I’m trying!

• No, seriously, there are any number of those ‘therapies’ out there that involve talking and thinking. And with some people some of them do work. To some extent. Eventually. Or maybe we just get bored and give up. And, er, I’m not sure I should be telling you this, but between you and me, we tend not to listen to any of the ones that are government-approved.

Ok, but wouldn’t it be better if we knew where you were, and how you worked? We could get you a message that worked every time in that case. And find out a heap of stuff about our body’s defence system and how it can go wrong. Could be a bit useful in medicine, that.

• You think? Well, they aren’t looking at the moment. Not even asking the obvious questions. Mainly, why do you feel ill when you get ill, and why do you stop feeling ill when you are better.

You’d look really stupid if you asked questions like that. You’d be laughed at. You’d never get another grant. Do me a favour.

• Yes, well, that’s why it looks like we’re going to have to get along for a little while longer. Best go and get some more painkillers now.

Thanks for the warning. See you.

• Yeah, and again, and again.

Still Feeling Ill

Dammit, forgot to ask the demon so many things, and he’s gone dark now. Like, are you in the brain, or the immune system? I think he would be coy on that one. And what about these cytokine thingys - are they the demons, or their messages to my body, or what? I think he would refuse to answer until at least I could show that we were trying to answer his basic question: Why do we feel ill?

But even if he had answered, I don’t think it would have helped me. Anyway, it’s nice to have a working model, a paradigm if you like, to help me explain this weird illness to myself and to others. I think it helps me understand both sides of the great divide: yes, it’s a physical malfunction, but, yes, it could be alleviated by all sorts of therapies, talking or not. Yes, there could be one or more mystery viruses, but it isn’t necessary to find them: it is the reaction to the virus that matters. Yes it could also be triggered by mental states, but it is the reaction to these states that matters, not the states themselves.

But, even with my demon paradigm, I am still on the horns of the old ME dilemma. To quieten down the demons, I have to rest. But resting makes my body deteriorate and weaken. So I am back to cycles of resting, a little activity, then finding that even a small amount of activity has triggered the demons again.

So I take lots of painkillers and hope. And keep trying various therapies. I guess I’ll find one one day. Or maybe the demons will get bored.

Feedback?

Well, have I added anything to the debate? Frankly, if I’m expecting any reaction at all, it would be of two kinds:

1. That’s ridiculous. You don’t know anything. All the evidence is pointing completely in another direction.
2. That’s obvious. Tell us something new. This is no surprise to anyone, and quite frankly we are amazed you thought it was worth bothering with.

But I do hope that, amongst all the ME research on viruses, psychology and so on, somebody is looking at, or has an answer to those two maybe obvious, but very basic questions:

Why do we feel ill?

and

Why do we stop feeling ill when we are better?