Tuesday, 12 May 2015

Me/CFS Awareness Week At Alan's Album Archives

Dear readers,

Here's a slightly different article for you to get your reading glasses tuned into this week and something a little bit away from our usual discussions of all things newsical, viewsical and musical - don't worry we'll get back to our usual praisee-ing of obscure albums nobody listens to anymore and harrumphing at modern music and the Spice Girls next week. However this week is a special week - M.E. Awareness Week - which has become increasingly useful to sufferers like myself to get out message across without being branded moaners/whingers/scroungers. Yes, I know, we're a music site and don't usually cover this sort of thing and I've gone without saying anything for the eight years this site has been running (though I've thought about saying it every year), but it struck me reading all the posts last year that we sufferers tended to be preaching to the converted about our illnesses to some extent - what we really want is the general public to learn about them. And while I know there's nothing general about my wonderful, talented, educated, cultured readers who have the fine taste to appreciate the same music as me, I leave this article here in the hope that those of you who've read everything else and still want might learn something and help us stem back the tide of ignorance and arrogance against us. After all, I've always used Alan's Album Archives as a platform for addressing stupidity, ignorance, injustice and hatred, I just happen to speaking it through firsthand experience rather than song form this time.

If you haven't heard of the illness then don't worry, most people haven't - I'm not sure I had except in vaguely prejudiced terms before I became diagnosed with it which soon turned out to be wrong. This is not a well known and hideously misunderstood illness, even though it's one of the most common ones around (affecting some 200,000 people in Britain alone and even then less per population than places like America). No one quite knows what causes it, although as a virus tends to send most people's symptoms off, mine included, it seems likely that a virus is involved somewhere - there's other evidence out there that it's a genetic malfunction, that your body is effectively over-repairing itself after illness or that it's a combination of these and/or bacteria, hormones or too much fluoride (or something that hasn't been found yet. Outbreaks tend to occur in rushes and while its not common in families there are cases of next generations getting the same symptoms (and quite often skipping a generation too. Which is just great - its not just us doomed to a fate worse than death and possibly resulting in said death we might end up inadvertently passing it on to our nearest and dearest too (apologies grandchildren of my future, but at least this site has provided you with the right music to listen to while you're stuck in bed like Grandad/Grandpa/Old Fogey Alan). While there is no one test that can prove the condition and it overlaps with many things, there are various things that can help rule it out - and specialists who see hundreds of patients a year but only tend to give out a few dozen diagnosis if that, plus a few 'rules' that have to be followed (most of the main symptoms over the course of more than six months). Remember, there's no test for multiple sclerosis either, but no one in their right mind would deny that that illness exists (apart from a few Daily Mail readers perhaps). Oh and there does seem to be 'tests' that can be carried out to half-prove the illness - but typically for our luck can only be found when you're dead (it's something to do with the cerebrospinal  - now there's a word for your next game of scrabble - fluids being cut and revealing something wrong apparently, which as generous as I try to be to medical science donating my head to be lopped off is perhaps a step too far even for me).

Inevitably as a result of this uncertainty this illness is also woefully underfunded (male pattern baldness gets more money spent on it in this country!) and frequently dismissed, despite the fact that it dates back to the Victorian era (a debate for another time - was Charles Darwin the first patient to suffer from it? Was Florence Nightingale another early sufferer?) and has been listed as a serious debilitating physical condition by the World Health Organisation since 1969. That should surely be end of story shouldn't it? I don't know of any other illness where people say 'The WHO, made up of the world's leading experts on medicine, which has been established for decades and undergoes the most intense scrutiny - yeah they must be making this up for the hell of it!' There is also far more overwhelming physical evidence for the illness than other conditions that also used to be ignored, from Multiple Sclerosis to Aids (one article I once read said that there is more evidence for the existence of m.e. than asthma) and with not just a similar but according to a majority specialists a worse standard of living than many major illness (the restrictions are equivalent to late-stage aids, for instance). Not many doctors agree on anything - least of all a convincing name for it (it really is the illness of a thousand names - variously M.E. or Myalgic Encephalomyelitis, Chronic Fatigue Syndrome or most recently SEIDS or Systematic Exertion Intolerance Disease - which still isn't what I'd prefer to call it despite being voted in as 'our' chosen name, but the fact that it spells DIES backwards is rather apt, so hey ho. Many sufferers have been obsessed recently about what name to give this illness which doesn't insult us or belittle us - though personally I'm more angry about getting a cure than what the illness I'm waiting to cure should be named). Things are changing, very very slowly - President Obama has been a big help with funding  and only the US and UK are still in the truly primitive stages of treating this disease, which is better treated round most of the world - but at this rate I really will be long gone by the time any concrete progress gets made. 

The other trouble is that the illness comes at different rates and different exhaustion levels, so some people do 'seem' to carry out normal lives, fooling people into thinking that the illness is always minor and possible to manage without too many alterations; sadly that's a false picture, most sufferers have it bad and they're the ones you don't get to see because they're asleep (or more likely trying to sleep) safely at home, worrying about the one time they have to be out the house the following week and whether they'll cope. There are in fact a lot of people far worse off than me - permanently bed-bound, unable to wash themselves unable to eat, unable to talk. Remember when you had that really bad cold and nobody saw you for days? Remember how you behaved when you finally had the energy to get out of bed and felt on the mend? 'I'm fine' you said, 'what did I miss?' It's a bit like that for us - nobody really sees the bad side unless you're unlucky enough to be living with someone clobbered by this.

Occasionally people assume that this illness is just a phase and will get better and reckon that being bed bound is the worst this illness can do. Nope! While it's only a small number of patients who get it this badly, me/cfs/SEIDS can and will kill (don't believe me? There's a site here that lists lots of the known cases, though the 'real' list of deaths unreported is surely much much longer: http://www.ncf-net.org/memorial.htm) While the m.e. tends to go hand in hand with some other nasty problem (like heart failure or organ collapse) and isn't always recorded on the medical certificate, thousands of patients would not have died without m.e. as one of their symptoms, weakening the body so the other stuff doesn't work.  Although  I am rather  staggered to learn that I am currently in the 'moderate' category', which given that I'm nearly bed bound and spend most of my time struggling - to wake up, for balance, to find a position that doesn't hurt, to get through everyday things I used to take for granted and quite often for a brain that works - I can understand why that can happen. This pain is worse than I ever imagined pain could be and even at my levels my body feels like it's ready to give up the ghost any time. And it's impossible to put into words how helpless you feel with all the 'crashes' that leave me bedbound, unable to think, unable to move, unable to cope, unsure when if ever you will be able to go about your 'just about coping' existence', worried that it could be your turn to go next. And still all you hear is 'Yeah that's right, just a bit of tiredness and a few aches and pains from getting older - nothing to worry about!'

Most of the sites you see say that this illness like getting a bad case of the flu just without the sneezing, but in my previous life I never had an illness this bad or this terrifyingly intense, day in day out. The condition is hard to describe and changes a lot (by the minute sometimes) but I've always likened it to being run over, every single blooming morning, by something (sometimes its 'only' a bicycle, sometimes its a steamroller, most days its a double decker bus). Your body isn't just throbbing it aches all over, in every muscle. You don't just feel as if you've had a bit of a rough night's sleep - you hate it so much you vow never to fall asleep again. You don't just take a few minutes to wake up and come to, you awake feeling completely disorientated and stay that way for hours. It's thought that, somewhere in all this, the body is tied up in a perpetual 'fight or flight' syndrome where the body is always at the limit and can easily be pushed past it - but there's also overwhelming evidence that it is both a genetic and a virus-driven condition. While debate exists about whether the pain caused the fatigue or the fatigue caused the tiredness, one thing's for sure: your body cannot repair and heal itself so anything you've done during the last few days you'll pay for. Very often I'll end up with aching arm muscles several days after lifting and carrying something that I've forgotten all about (sometimes I can't even work out what it was that set me off), or will wake up screaming in agony as a muscle in my legs gives way in my sleep and wakes me up - even though my heavy walking day was so long ago I've forgotten all about it and been in bed ever since.

Muscles don't just hurt, they spasm in my sleep because they can't repair themselves. I don't just get tired, I stay exhausted - and that's on my better days.  I don't just feel it a bit the next day if I do something major - I feel every little muscle action, every little ache and pain to an intensity I previously thought imaginable (and as those of you who've read my reviews as seen through the eyes of the cow or the talking heads in the cover of various Pink Floyd albums or our April Fool's Day columns will know, I don't lack for imagination, more an ability to reign it in). I don't just sleep badly, I barely sleep at all and when I wake I can't believe the hour can possibly be right because it either seems like a million years since I was last awake and vaguely conscious - or that I've slept a grand total of about ten minutes (it's not an exaggeration to say I haven't had what most people would consider a proper night's sleep in eight years, even though sometimes I can sleep for 12-14 hours). I don't just get short of breath, I have a permanent tight chest that feels as if my heart is about to give way. I don't just get slight tummy ache anymore, I get chronic indigestion and have ended up loathing the words IBS (Irritable Bowel Syndrome) almost as much as the initials IDS (our failed welfare secretary in the UK, Ian Duncan Smith). I don't just get hungry, I spend most of my time starving, my body so desperate to replace the missing energy it needs that it demands more carbohydrates all the time. My body clock doesn't work, leaving me unable to cope with anything in the mornings and I'm at my brightest a good three years after most civilised people are in bed (which of course makes you want to stay up later so you can put off feeling so rough again). I don't just have occasional headaches, I have pounding migraines that can blur my vision and leave me unable to move. I don't just have a woolly head that can't think straight, I have a permanent cardigan over my bonce, twenty four hours a day, seven days a week. My body can shake and shiver because its passed it's limits and last for so long it's scary. And it's not just one day that's a problem - this is an illness that's accumulative, with flare-ups that can last days, weeks, months, years - even decades (I've never recovered from a car ride I took four years ago - and probably never will). This is an illness that leaves you drained and with no shops stocking the right make of batteries. Worst of all this can be a very lonely illness - the world is going to sleep when you're waking up, the shops are shut, friends are out and only your fellow sufferers on twitter seem to be awake (a quick shout out to the wonderful friends I've made there - you know who you are!) And yet after fighting through all this, fighting to do what I can with the only medium I know how and the only thing I can do at all times of the night in my pyjamas if I have to, in between bad spells(writing). The papers will tell you that welfare recipients are living the life of Riley, us especially. But this isn't living - I'm not sure this is even surviving most days.

What's more, whilst other illnesses get the aid they deserve and lots of help and support there's nothing much that can be done for us sufferers - some people find certain pills help and there's medical evidence out there that drugs used to treat other conditions work for us too, but nobody has yet put the money in to find out (and not without lack of trying either). Some of my friends swear by certain painkillers, others use steroids (which have the side effect of leaving you even more like a zombie - and trust me when the zombie apocalypse comes I know I'm safe as I'll be instantly accepted as one of theirs even without taking anything extra). While the baldies out there get money thrown at them to help get them a head of hair they looked better without anyway, I have to get by on paracetamol and occasional life-saving massages (none of the me/cfs sites seem to mention back pain but that's right up there in my 'cfs desert island risks'), the only things I've found that work for me.

Oh and pacing myself so that I only do a set amount of work every day no matter how great or ghastly I'm feeling, the only thing that works - well up to a point (planning is a sufferer's best friend, but you'd be amazed at how many people decide to re-write the plan and expect you to do something without warning anyway). Easy you might be thinking - no doubt the pre-illness me would be thinking it too - make sure you have a 'day off' after you need to do something and Bob Weir of the Grateful Dead's your uncle. But the world doesn't work like that. I can't tell you how many home or friend emergencies have happened when I simply haven't the strength to cope - but had to find it anyway. I can't tell you how many Government letters and forms have come through my door at the worst possible moment, with demands that the thirty pages (which don't cater the worst aspects of my condition at all) be filled in now or sooner or you don't get any money at all with a deadline two days after you receive them. While the job centre staff I am with now couldn't be nicer, I can't tell you how many problems I used to have back where I used to be - how many ignorant, pig-headed people made me do things I couldn't do at times I couldn't do them or told me that I'd been ill for long enough already, like this illness has a best before date (before you ask, it can get better and there is hope - but for a majority of sufferers it will never go away). While my GP and my old specialist have been wonderful and  I can't praise them enough (I'm one of the lucky ones here - though even then I went through my share of nasty ignorant dismissive doctors before I got here), they deserves better than to have me filling his time up asking for the same blinking medical letters every year about an illness that's unlikely to change much.  I can't tell you how many appointments I was given at faraway stretched of the country even the healthy couldn't normally get to, only to be told that there was nothing wrong with me - which is always nice to think over when you're lying in bed for a week precisely because of that appointment which wasted your time as well as theirs.

And for my regular readers: as you may have noticed I run a website.  This website. The solution looks simple doesn't it? Give up writing and lie in bed all day going 'ow'. I can hear the sceptics from hear reckoning that because I can write this many words a week I must be alright really - even a couple of you have been kind enough to get in touch and say they're glad I must be feeling better because I'm writing more. But actually, especially recently, the worse I am the harder I write. I've been told not to do that many a time, been warned that I was doing too much by my friendlier medical people (whilst at the same time being told I wasn't doing enough at the jobcentre) and I've tried. I really have tried. I've slowed down. I've held back. I've thought more and written less, I've done less of everything. I once barely wrote anything for a whole year - and it was the most miserable year of my life. But oddly enough writing isn't that much of a strain, providing I have the time and I'm not at my absolute worst (in the sense that whatever I did, including lying in bed, is a strain). And, you see, on the days I get it right, writing these reviews can transport me out of the tiny prison of my present existence and offers a chance for most of my sub-conscious to think about something else other than 'I only got four hours sleep last night and need to be ready for something tomorrow - how do I cope on that?' and 'ow ow ow' (pronounced OW OW OW!!!) I actively took the decision a couple of years ago to either slow down, stop altogether or speed up. It was a hard decision to make - and I'm not altogether sure it was the right one - but I needed a 'future' as the illness had taken away so much of my present and it's the writing that gives me one last thing to get up for.  Even more surprisingly, to date the only part of my brain that isn't fogbound seems to be the parts of my memory related to my favourite musicians (I can't tell you what I had for breakfast, but I can tell you what the B-side of an obscure Jefferson Airplane single from 1966 was without looking it up) - I spent a long time wondering if it was a part of my brain that had been saved by future sci-fi me during a trip back in time to fix my broken body that went wrong, but it seems more likely that all that stuff just went in too deep for it to be removed (listening to music regularly means the memory gets a refresher course regularly whereas I don't need to remember other anywhere near as much). Given that there's no more important subject in the world than 60s and 70s music, that's what you got on this website - writing about being poorly, though done so well and brilliantly by so many other bloggers, is actually quite boring for me and depressing when it's not good news.

The trouble is too I don't like talking about my illness much - if I was to complain whenever I was in pain or suffering from a lack of sleep then I might never stop. I probably don't complain as much as I should so others forget how much pain I'm in, but complaining costs energy too and I'd rather use that energy fighting this thing and coping with the consequences than spend another year in bed staring at the ceiling and wondering which AAA album cover would work best as a mural (it's between The Hollies' 'Evolution' and the inner sleeve of The Moody Blues' 'To Our Children's Children's Children' as you happen to ask. What do you mean you didn't?!) The fact is too that there are some truly wonderful me/cfs bloggers out there who can tell you so much more than I could (curiously enough I've often noticed how 'alive' and vibrant the writers of most of the me online community are, miraculous for people who are half-dead); for an illness that isolates you as much as this one does there isn't half a solidarity out there amongst the bloggers who are heroes all for having the courage to do this every year. I'm not quite sure who I'm telling my side of the story too either - the people who clicked on this link expecting to read about an obscure psychedelic band named The Chronic Fatiguers perhaps - but the story needs to be told by somebody and particularly to people who wouldn't otherwise have heard about it (and I couldn't sit there hypocritically typing 'people need to be told!' for another year now that my website has been getting more hits). I'm sorry that person had to be you and I'm grateful as always, dear reader, for your patience.

If I could lean on it just a little longer though, there's one particular problem with the me/cfs online coverage that annoys the hell out of me every time I read it and it's a controversial one so I've largely left it to here: the thought that the illness must be a 'psychological' one, despite flying in the face of all the medical evidence (and no its not 'if it was real someone would have found it by now' as soke have argued - there have been several tests demonstrating abnormalities in brain patterns, red blood cells and an over-reaction of the immune system when provoked, but every time a promising paper comes up and the community gets excited the Government block it and even on occasion try to alter the findings).Unlike so many it seems I have no issues with mental illnesses, which are as brutal and limiting as any physical ones and just as unavoidable. I do know sufferers who have both too (if anything was going to cause long-term depression its being ill and nobody believing you after all). However I object to people who assume that this isn't a physical illness, when all the evidence says that it is. There's even a monster masquerading as a psychologist (even though he's barred from practising and doesn't have the right qualifications) who makes it his life's work claiming that me/cfs is 'all in the mind'. The psychiatrists of course know that they're on to a losing cause as more and more tests with this illness are made so have been getting increasingly desperate in recent years - to anyone in the know their cause is clearly failing, although it's still not failing fast enough for general public perception. From the outside that argument may look vaguely plausible and understandably leads to the people who don't 'get' mental illness to condemn you, but let me tell you from the inside it's nonsense: there's nothing more insulting than being told you're 'lazy' when you've never fought so hard in your life to accomplish anything. The fact that this website is about to celebrate its 1000th post - with two-thirds of them some seven thousand words long at the very least - for a grand total of £17.52 (the collective amount of money made from this website - it's not about the money, it's about the music) should show how wrong that statement is and I'm far from the only cfs/me blogger out there with that story to tell. The trouble is, though, that people 'believe' doctors to the exclusion of all else - even when the doctors admit they know nothing themselves; the fact that thousands of us report the same conditions, come up with the same results in tests and the fact that it goes against everything in your character suddenly counts for nothing; of all the problems that are the most damaging in this condition it's the mistaken unfounded betrayal of friends and family that's the worst thing to bear, when they assume that the medical world covering up for being clueless must be right and you're all wrong, despite the evidence, despite the tests, despite the seriousness of the condition of all the sufferers.

The only similarity between depression and me/cfs is that sufferers are to some extent trapped in bed. The differences though are colossal; if you want to know whether you have 'depression' or 'me/cfs' or somebody you know has then surely the biggest difference you only need to ask them what they would do if they had the strength. It seems likely that the patient with depression would answer 'I don't know' or 'it's not something I've thought of' or 'I can't even possibly think about that till I'm better'. The me/cfs patient will give you a list ten foot long, reminisce for hours about all the things they used to do which they long to do now (and do do now, occasionally, when their bodies let them ,whatever price they end up paying for it). They'll even show you proudly some slight effort towards that over life that might have been: they'll have gone back to studying (they may have given up after an hour after being in too much pain, but they'll have tried), they'll have drawn up a sheet of jobs that need dong round the house when they're well enough, they'll have created blogs like this one (there are many many me/cfs blogs, far higher a quota than with most illnesses) or if they're capable they'll be doing voluntary work. The only real similarity between the two illnesses is that the sufferer is trapped - but there's world of difference between the boxes they're trapped in. Depression is a black airless box with no windows and a locked door that can only be opened when the prisoner has just the right amount of force to break the lock, if ever they get that far. Chronic fatigue suffers are trapped in a glass box that offers perfect views of the outside world - a world in which the sufferer can no longer participate and is reminded of the fact at every turn. Every so often you'll see someone doing something you really wanted to do, or making the most of an idea you once had or read about someone living the life you thought was going to be yours one day. Fresh air from outside continual passes through your glass box, reminding you that there's an outside world out there for when you're string enough to get back to it. Sometimes it's a hopeful breeze that calls you to the outside and sometimes it's a tornado, smashing everything you've built up except the box itself. You can't help but look out or see people looking in with scorn on their faces because your box is glass - it's magnified everything that's going on outside (ordinary life is always far less interesting to the people who are living it) and you can't help but see out and see what the world is getting up to without you. The depression sufferer does not care what goes on outside the box (on their bad days at least) because the box is overwhelmingly dark- the me/cfs box is overwhelmingly full of sunlight that you're desperate to get out and feel, but can't. Both of you are prisoners and both of you can't help it, but both of you are prisoners of different cruel monsters and at the mercy of very different beasts.

The other misguided notion is that exercising makes it all better. While some sufferers who are slowly gaining improvements will indeed find it beneficial, it's not a cure for me/cfs and does more harm than good in many cases. Effort takes effort. Effort is what you don't have - and while you can occasionally buy a 'loan' from the bank of energy if you've stored up enough credits (people who don't know about it might enjoy the 'spoon theory', an excellent visual guide to this problem: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) this energy bank has worse interest rates than Wonga. You don't just have to rest for a little bit after doing something - you have to rest a lot for a long time. What's more, exercise hurts, it's your body's way of telling you that you're doing something wrong - and sufferers become very in tune with their bodies telling them when something is wrong. The cost you see is just too high - and while being a permanent couch potato is probably worse for you than moving a little bit, it's so easy to go too far. Not least because you don't know that you've gone too far - you might not know until finding yourself unable to get out of bed three days later. People who exercise regularly will of course get tired and a bit achey, but it's a 'good' ache from what I remember from the dim and distant past - a slight pain that tells you you've been working out hard enough to reach your limits and your limits are pretty high. Me/cfs sufferers are already way way waaaaaaay past their limits before they even start - and the ache you get isn't a 'good' ache but an 'oh God I can't move' ache - the ache we've come to dread. To be honest having to suddenly rush to the loo several times a day without much warning means sufferers will be getting more exercise than most anyway, even if it doesn't seem that way.

So, our regular readers might be thinking, that's all nice and well and I'll remember to be more helpful when I hear of someone with the illness - but I came here to read about obscure non-charting solo albums by members of sixties bands nobody remembers - how the hell did I end up here and what does all this rambling mean for this site? The trouble is, I don't know. It could all go away tomorrow (although after eight years at this level of pain that seems unlikely - it generally takes a long to pull yourself out of the hole as it does to get in it, so that's another eight years even if I started getting better tomorrow, which I doubt somehow). It could go on for years or the rest of my life, gradually taking away even the part of my body that can just about hold myself up to type and the part of my brain that can still think about music I haven't heard in years relatively clearly even though I can't remember what I had for breakfast. It could, I fear, kill me.  I fear I might not be able to run this site for too much longer. I've been getting weaker, slower and struggling with the repercussions more and more (generally being interrupted to do other stuff unexpectedly on top of heavy writing days). And yet I've been saying that since the beginning and with only two years or so to go before all 500 key AAA albums are reviewed, I know it will take a lot to prevent me from reaching the very end of this project, whatever this illness throws at me. It may be notoriously stubborn, but I am stubborn too. The downside is I have to do this relatively quickly or I really fear it won't be done - the illness will have claimed me totally and I'll either be unable to have the strength to do any of it or dead. I've had less time to re-write these articles (the bit I like doing least of all anyway) and I've noticed more mistakes are slowly creeping in - sorry. This is not a choice I recommend for any other sufferer - pacing, slowness, rests and no stress are the real things you need to help so please do as I say rather than as I do - but if I slowed down I was at risk of not getting anything more done at all and after eight years there's no chance I'm leaving this project unfinished. Neil Young once posed the question 'is it better to burn out than to fade away?' The answer is different for everybody, but for me it's 'burn' - I've been fading away for too long and I have to achieve something, the illness has taken everything else away from me but it's not having this (Janis Joplin and Dire Straits are all ready to go for next week in fact). I often joke that my ghost will still be posting updates until it's over.  However do be warned - if I go quiet it's because I can't, not because I won't. May the Gods of obscure prog rock concept albums from 1969 smile down and keep it safe from trolls, hacks and David Cameron.

Erm, anyway, back to subject - though I must confess its hard using the same medium to talk so much about my illness that writing has been is good helping me repel. By now you might be feeling a little concerned on our behalf if I've written this right - you'll almost certainly be feeling angry, if only at me for making you read so much. So what can you do with that anger/outrage/new found wisdom? Well the trouble is we can do so little for ourselves. It's one thing writing a blog - it's another actually having your voice heard by someone who can do something about it. We can't go out and campaign ourselves  - because most of us are bed-ridden. We can't raise a lot of money - because most of us are struggling to make ends meet on benefits that only a few of us were lucky to get in the first place anyway. We can't even really be seen - because if you do see one of us around you can bet your highly prized Beatles wig collection you're seeing one of us on a moderate-to-good day or we wouldn't be out the house at all. (A place where that old bugbear question of the me/cfs patient 'How are you?' tends to be answered with 'I'm alright', no matter how many double-decker busses parked on top of steamrollers and sat on by Brian Blessed happen to be on top of you at that very minute; it's just what you're trained to say and most people can't follow or care for the explanation anyway). In short, we can't get on our high horse en masse - because the horse is too high to sit on. We need you - yes you! - not to rally on our behalf necessarily, not even to raise money (although there are several excellent me/cfs charities that would be grateful for it) but we desperately we need you to 'get' it. And to keep this all in the back of your head the next time you write some sniffy article by someone who doesn't 'get' it. And to tell your friends and family off when they 'don't get 'it'. And to keep on telling them until they do get it. Power to the people, as John Lennon once said - we can't change the minds of those in power if we can't change our own first. We just want to be heard and understood and know that you're reading the 'truth' from someone who has the illness firsthand rather than from an ill-informed reporter who thinks the illness just means sleeping a bit more often or from biased and crooked medical practitioner (which is all the fault of our old bugbear Margaret Thatcher and her pal Ronald Reagan - afraid that early tests suggested a link between the illness and pollution they set off on a smear campaign to claim it was a made-up disease in order to not have to pay people compensation - there are still records locked up under the official secrets acts for another 90-odd years, far longer than any other health documents and no doubt that will be extended again next century; luckily there have been 'leaked' copies). It's an unfair fight, dear readers, that none of us were ever supposed to win.

But we are. Little bit by little bit. Every year more of the word spreads. Every year there's a new test with promising results, even if those results get swept under the carpet. And it's not all bad - occasionally there'll be an me/cfs piece on television that actually bothers to be balanced and - occasionally - very much on our side after years of stupid comments back in the 1980s and 1990s (Matthew Wright's Wright Stuff for instance is particularly good in this regard and deserves more kudos from our community whenever they're brave enough to tackle this issue). Each time of year that me/cfs week rolls round I'm super impressed how many people are out there raising money by doing the activities we could never do in a month of Lazy Sunday Afternoons. Every few months someone important, someone the papers can't ridicule too much will come out and say 'I have me/cfs and I hate the way it's treated' at the risk of their careers - take a bow Cher, Michael Crawford, author Laura Hillenbrand, Britain's former number one squash player Peter Marshall (whose autobiography 'Shattered' is still the best single book on the illness I've read) and our very own Stuart Murdoch of Belle and Sebastian (whose recent CD includes 'Nobody's Empire', a gorgeous song about his own experiences) who've had the guts to speak out about their experiences. They tried to tell us this illness didn't exist and they even won a few battles early on - after all, this is hardly a fair fight between people who have all the power and those who can barely get out of bed. But we can still win. We are winning. We will win. Those of you still fighting - keep in the fight because we will be heard! Those of you not in the fight but who know people who are - help them fight! Those of you who haven't got a clue what I'm talking about but have been swept up in the fervour anyway - fight for us anyway, we need you! This Dickensian attack on the suffering has gone on for far too long, but it won't last forever. One day the world will be a fairer place, if not for 'us' then our children or grandchildren might have a cure or at least a better and fairer understanding. One day the world will stop offering us made-up solutions they just know will help, honest, long enough to listen to what us patients are actually saying. One day the world will see the truth and it won't be because of a major change of policy but because of a major change in people's minds. The time for that change is - well actually it was a long time ago, but better late than never; that change needs to be now. That was a party political broadcast on behalf of Alan's Album Archives and we will shortly be returning to normal service.

But before I go, one last thing to reward the music fans who've struggled on this far, a quick 'top ten' of suitable AAA chronic fatigue-inspired/inspiring songs and where to find them (an expanded version of our very first website post in fact!):

1) Belle and Sebastian "Nobody's Empire" (from the album 'Girls In Peacetime Just Want To Dance' 2015) 'I clung to the bed and I clung to the past, I clung to the welcome darkness...intellect ambition fell away and they locked me up for my own good, we are out of practice, we are out of sight, on the edge of nobody's empire'

2) Graham Nash "Another Sleep Song" (from the album 'Wild Tales' 1974)  'All I need is someone to awaken me, much of me has gone to sleep and I'm afraid to wake up...There is no time to waste another day because we watch them fly away!'

3) The Rolling Stones "Rocks Off" (from the album 'Exile On Main Street' 1972) 'I want to shout but I can hardly speak...heading for the overload, down some splattered on the dusty road, kick me like you kicked before, I can't even feel the pain no more...How come I only get my rocks off when I'm sleeping? How come I only get my rocks off when I'm dreaming?!?'

4) The Beach Boys "I Went To Sleep" (from the album 'Friends' 1968) 'Ten thirty I turned my radio on, some group was singing a musical song, it wasn't too long - and I went to sleep!'

5) The Beatles "I'm So Tired" (from 'The White Album' 1968) 'I'm so tired I haven't slept a wink, I'm so tired my mind is on the blink...You'd say I'm putting you on, but it's no jokel, it's dong me harm, you know I can't sleep, can't stop my brain - I'm going insane! - I'd give you everything I've got for a little piece of mind!'

6) The Kinks "Sleepwalker" (from 'Sleepwalker' 1977) 'Everybody's got problems, buddy, I got mine, when midnight comes around I start to lose my mind, when the sun puts out it's light I join the creatures of the night, oh yeah!'

7) The Small Faces "Every Little Bit Hurts" (unreleased live show 1968, found on various compilations) 'Every little bit hurts, every night I cry, every night I sigh, every night I wonder why you treat me so cold - won't let me go...I can't keep on giving my life away!'

8) The Who "Sh-aching All Over" (from the album 'Live At Leeds') 'Quivers down the backbone, chills down the thigh bone, tremors in the back bone - aching all over!'

9) Neil Young "Brain-fog Of Loneliness" (unreleased 1969, found on 'Anthology' 2009) 'Bad fog of loneliness put a cloud on my single-mindedness...So long woman I am gone, so much pain to go through!'

10) Pink Floyd "Uncomfortably Numb" (from the album 'The Wall' 1980) 'You are only coming through in waves, your lips move but I can't hear what you're saying...I can't explain, you would not understand, this is not how I am!'

and a special mention for The Byrds' "Fido" (from the album 'The Ballad Of Easy Rider' 1969), which is surely a mis-spelling for our sister condition fibromyalgia 'Fibro (made me) stay up late, would not go home, asked him to leave, felt a pain in every bone, but I'm still lonesome, wide awake, staying up late, wishing I was not! You were on the outside talking to some chick, I was on the inside feeling mighty sick, sleep is what I wanted, but you know what I got, wide awake, staying up late, wishing I was not!' 


  1. As a fellow sufferer of an "invisible" disease, I can empathize. I wish I had stronger words of encouragement, other than to say this: carve out your victories whenever and however you can, no matter how small or seemingly insignificant. Even a small step forward is something. My symptoms are nowhere near as debilitating as yours, but during a flare-up the only thing I scream out for is health, for healing, for the pain to go away, to return to some semblance of normalcy, even if it means fuck-all in the long run. But I hope that you can find them along the way. Good luck to you buddy.

    1. Hey thankyou my good buddy, very kind of you! Great words of advice as ever too - yep, every day usually has something accomplished, with every column a victory and everyone still to write a reason for keeping going! I bet you understand more than anybody how writing helps too (I urge everyone reading this to to go visit http://millheiser.com/hokeyblog/ by the way, it's a fantastic blog and one of my all-time favourites!) So agree re the flare-ups too: it's scary how much you take for granted when you're 'well' (or at least on a better day!) I hope your illness is more under control - I've always been so impressed with how you handle it, especially given all the miles you run! Thanks for taking the time to read my friend! 8>)