AN UNCERTAIN FUTURE/ THE DANGER OF HOPE

Mostly, I manage not to think about the future. The present is enough to be dealing with so, although I do look forward with a kind of dread, most of the time I am so caught up with dealing with what is happening now that I succeed in pushing thoughts of the future to the margins.

That is, until I start a new medication or course of treatment. At these times I find it hard to stop myself imagining what it would be like to be better. I am aware that this is not a useful activity, but it is difficult to avoid.

I did it last year before I began the Perrin treatment. I tried not to, but the therapist told me that he thought I would make a complete recovery in twelve to eighteen months. I didn't take this claim at face value, but did begin to expect something, some improvement, some more energy.

Naturally, when it didn't happen, I was disillusioned, brought low. I felt stupid for letting myself hope, for believing - even for a short time - the therapist's confidence in a recovery.

And now it is happening again. I am in the process of having tests and then hopefully getting treatment from the Breakspear clinic in the UK. I am particularly interested in trying anti-viral treatments, which some people have had success with in the past, and which I know Breakspear do offer.

Having to rest so regularly, I have too much free time to think, and so my mind wanders. And naturally it wanders from time to time to thoughts of a fuller life, what I would do if I could, the dangerous territory of imagining being better, or close to.

I begin to think about full time work, about saving for a house of my own, about travelling, getting a girlfriend. I start imagining a scenario where I am a more or less fully functioning member of society, with realistic ambitions and not such a compromised existence. I do try to squash these thoughts, but I can't keep them out forever.

And I think what I most dream about is less about a fuller life - which actually seems almost impossible to believe in after fifteen years with this - and more about losing this aforementioned dread of the future.

Because without some kind of significant improvement I really don't like the picture of my future that I see. In my early forties now, I am experiencing the first symptoms of aging, without really having experienced my youth. My late twenties and thirties were devoured by CFS/ME, and although I have regained a limited amount of functioning, and do have at least half a life now, I can never get those years back. I could probably handle my mid-life crisis better if I had actually had a full first half of my life.

And so the idea of getting into my late forties and fifties and still having to deal with this, is terrifying. Still struggling with finances, with no pension, pushing myself so I can work enough to pay rent, all the while getting older and with the normal reduction in health and energy that aging brings. And I don't have any energy to lose. At forty-one I am just about coping, I can't imagine how I could when the years start taking their toll.

The thought is so terrifying that normally I don't actually address it head on, though it still hovers there at the back of my mind. So an improvement would mean a fuller life, it would open up possibilities that are closed to me now. But it would also give me back some kind of positivity about what is to come, and might give me some hope that I still have a life left to live that is worth something, rather than what I am doing now, which is mainly just surviving.

Yet hope can be dangerous too. I have been through this quite a few times now. Starting a new course of treatment, I begin to believe in the possibility of recovery. And when it doesn't happen, as it invariably doesn't, picking myself up again after hope has been smashed, is tough.

Without hope it is impossible to go on. Yet with a chronic illness for which there are no real reliable treatments, you have to manage this hope. Maintain scepticism, never let yourself get carried away imagining a better future, while also trying to avoid getting too overwhelmed by thoughts of never getting better.

It is a delicate balancing act, balancing hope and dread, and not one that is always easy.

WHAT'S IN A NAME - ME OR CFS?

This condition that I deal with every day, the one I have lived with for more than fifteen years, is one that doesn't even have an agreed upon title for itself.

Its official title is Chronic Fatigue Syndrome (CFS). It has been named as such by various medical authorities in the US and in Europe.

Many sufferers prefer the term ME. ME stands for Myalgic Encephalomyelitis. Myalgic refers to myalgia, which is basically muscle pain. Encephalomyelitis is another way of saying "inflammation of the brain and spinal cord".

I suspect that the reason many people choose to use this term is that Myalgic Encephalomyelitis sounds much more medical and serious than Chronic Fatigue Syndrome. It suggests a real condition, and this is what sufferers want above all, for it to be acknowledged as a real, serious, physical illness.

It is also true that CFS is favoured by the group who insist on seeing the illness as a psychiatric condition, and this does not endear this title to people who are fighting against this view of the illness.

People get very annoyed when discussing this matter. There is a way of thinking that sees the title Chronic Fatigue Syndrome as somehow disrespectful, that it implies that all we are is tired. ME, it is said, is closer to describing the severity and complexity of the illness.

Others maintain that CFS does exist, but that it is different to ME, maybe less severe, more easily treatable. I've read a number of discussions on Facebook pages, and on forums about this, and it does get pretty heated. People feel strongly about this topic.

My opinion is that ME is a terrible name for this condition in general. Moreover, it is utterly undescriptive of my particular situation. I don't have any muscle pain, and there are many other people who don't either. And there is no evidence to suggest that my brain and spinal cord - or anyone's brain and spinal cord - is inflamed.

The term ME gives almost no information about what this condition is like, describes only one symptom that is not even universal, and is misleading when it describes a physical effect that doesn't even exist.

So ME may sound more impressive, yet this doesn't make it more accurate. And it is important to be accurate. Chronic fatigue syndrome is at least true. People with this condition do have chronic fatigue. The term CFS may be inadequate, it may leave out a whole world of other symptoms, but at least it is not misleading. Myalgic Encephalomyelitis certainly is.

My preference would be for CFIDS - Chronic Fatigue and Immune Deficiency (or Dysfunction) Syndrome. It is used a little in the US, though used to be used more.

CFIDS has the advantage of mentioning the immune system, which is a key component in causing symptoms, as well as the main symptom, fatigue. It certainly comes closer to describing my particular situation than any of the previous titles.

I suppose, though, that it is too much of a mouthful - even in the abbreviated version - to be a practical way of describing the condition. We need a title to be concise and easily explainable.

The truth is that there is no perfect way of naming this illness. There is no way of summing up the complexity and seriousness of what it's like to live with it, while also being accurate as to causes and dysfunction and symptoms. The best we can hope for is an approximation. CFS is unsatisfactory, but in my opinion it is better than ME, which describes nothing.

Until we understand the causes and mechanisms of the disease a little better we seem to be stuck with this unwieldy mish-mash of CFS/ME. The problem is that we lack any better way of describing the condition because we lack a basic understanding of what is behind it. Once that comes, let's hope we can get to a better way of naming what we have.

THE BREAKSPEAR CLINIC 1

The reason I started this blog was that, about three months ago, I started looking into getting treatment in the Breakspear Clinic. This is a clinic in the South of England that specialises in allergies and environmental medicine, including treating CFS.

I had read their website, but I wanted some first hand testimony from people who had actually been to see them and who had gotten treatment. The clinic is expensive, so before going I wanted an idea of what I was letting myself in for.

There was very little out there on the Net. I found the odd blog post, a few posts in forums, but little that would give me any real information.

I decided to go ahead anyway with an appointment with one of the doctors there, Dr Jean Munro. As I am in Ireland, they arranged it so I could have the appointment by Skype.

I also decided that I would start recording my experience with the clinic, for those who are coming after me and wondering whether it is worth spending all that money to attend Breakspear. A blog seemed to be the best way to do this, and so here I am. In essence I am doing what I wish someone else before me had done. It would have helped me a lot when I was trying to decide whether to go down the Breakspear route.

So far, my experience with Breakspear has been mixed.

I had to fill in a lot of forms before the first consultation, medical histories, symptom charts, medications lists. The consultation began almost on time, practically the first time that I have ever seen a doctor at the time of the appointment.

Dr Munro was sympathetic, asked me about the onset of my condition, what my major symptoms were, asked about my diet, what I was taking etc. There wasn't a whole lot to the consultation, to be honest, she eventually got on to what tests she would recommend, and we finished within half an hour.

And that's as far as I have gotten so far. The specific tests I have been recommended to get are as follows....

Priority 1.

Immunology profile

Comprehensive viral panel

Priority 2

ATP Profile

Cardiolipin

DNA Aducts

Translocator study

There was a third priority, stool analysis, and IgC food panel, that I am not going to do at the moment. They sent me explanations on all of the tests except the Cardiolipin, though in truth I am none the wiser. I am only really taking them at their word that these are worthwhile, productive tests.

The reason the two tests above are priority one is because they were what I asked for, I have never had any immune investigation or tests for viruses, and I wanted to get these done.

I have already had blood drawn for the priority one tests. I am undecided about the priority two tests as yet, my next appointment isn't until late June so I don't have to decide yet.

As I have said, my experience with Breakspear so far has been mixed. Initially I found the administration side to be less than efficient. I had to email them requesting that they send out the forms that I had to fill in before the first appointment. Then, before they actually sent me the forms, they emailed me asking if I had returned them.

When the arrangements were made, there was a little confusion on a number of levels. I had given them my credit card details, yet they emailed me asking for these details, as if they had mislaid them. They sent me contradictory information in arranging for the first consultation, though that was quickly sorted out.

They did facilitate me in enabling me to get the blood drawn here in Ireland and then send it to them next day delivery to get it tested, though when I received the kit all of the blood bottles had my name misspelled and I was down as female (I am not).

My biggest complaint with them though, is when it comes to payment for the tests. I rang them and confirmed that I wanted to do priority 1 and 2, and was quoted a price of £1100 or €1300. Before I even received the kit for the tests, they had taken the money from my credit card. They didn't inform me that they were going to do this, and it meant that I was over my credit card limit.

In fact they took my money three days before I even received the kit, never mind actually getting tests done. As we speak it will be another couple of weeks before I can arrange the second set of tests - if I do them - and yet they have had over a thousand euro of mine for nearly a month now. Charging the money to my credit card is by far the most efficient thing that they have done as yet.

I have read a little more about Breakspear since I went down this road, and one theme seems to be that they are a business first, a clinic second. That too is my impression. They are, in some cases, helpful when I have a query, though when I rang to complain about them charging me so quickly for the tests, they were utterly unapologetic. I have to say that I am not massively optimistic for whatever potential treatments that they propose, yet it is an avenue that I haven't explored yet, and so I feel I need to tick it off my list and give it a try.

I still suspect that I may end up spending thousands with no tangible benefit to my health. My big problem here is still lack of information. I don't know how useful those proposed tests are, and have no way of evaluating whatever treatment they will suggest.

I will update as and when I get any results or new developments.

LOSS (AND GAIN)

I can't count what I have lost because of chronic fatigue syndrome.

In truth it is not something I really want to do, and yet seems necessary so as to be able to fill in the full story.

Anyone who has experience of chronic illness knows all about loss. The first thing to go, of course, is control. You lose control over where you go, what you do, who you speak to. You lose financial control, control over relationships, control over your future.

I have of course lost friends. As I was in my mid twenties and living in a foreign country when I fell ill, I had, at that time, some friends I hadn't known that long, but that I liked a lot. When I had my collapse it was impossible, in those days before widespread internet access, to keep those friendships going.

You need things in common with people who are to be your friends, and if you don't have much of  a shared past then you cannot maintain connections with people who are out in the world living their lives while you are struggling with showering yourself.

I have lost the chance at a real career. I am lucky enough to be able to work part time, but it is a tenuous professional existence that I have, a self-employed teacher reliant on a reduced number of private classes and tutoring to pay the rent. I am forced to work this way as a full time job is impossible in my situation. It is not very stable or secure.

Because of this I have lost the chance of ever really owning my own home, something nearly all of my close friends have done. I have no pension plan, few savings, a very reduced standard of living, no financial security. I am not quite poor, but am struggling.

And it is unlikely that I, in my current incarnation, could manage to maintain a relationship. After working my half a week I have little left to give. I have a need for regular solitude which doesn't really gel with having a life partner. I have little left that I can compromise on, and compromise is a basic element of any relationship, I believe.

And following from that, having children is unlikely. I can barely take care of myself, having a child is almost impossible to imagine for me. This is usually thought of as being more of a loss for a woman, and I'm sure it probably is. But for a forty-one year old man who has paternal instincts the loss of the possibility of having a child is something that does sting too.

And I lost my thirties. Or most of them. My late twenties were spent trying somehow to deal with this hole called CFS that I had fallen into. Most of my thirties were spent flailing around, limping along between relapses and slight improvements, until about five or so years ago I started taking certain supplements, began learning how to manage things a bit better and half-emerged from the darkness. But that decade is gone, and is not coming back.

To sum it up, CFS has prevented me from going through all the normal stages that people go through as they grow up and get older. I am forty-one years old, yet often don't feel like a real adult.

And this was going to be my complete blog post for today, a list of what I have lost. And then I got an email from fellow CFS blogger, I'mNoPosterGirl. Amid other kind thoughts she mentioned that I was "lucky (or some sick version of lucky) to be at 60-70% and able to travel".

And of course she is right. It is easy to dwell on losses, on what has disappeared, on what I have missed. But the truth is that, compared to many people who are housebound with CFS, or who are severely limited and unable to work, I am lucky. I do have at least half a life, which is more than others with this condition.

And so it is necessary to think about what I still have, or what I have gained in the last fifteen years too.

(A slight interjection here to say what I don't mean by "gain", and to mention my least favourite popular platitude - "Everything happens for a reason." - Eh, no it doesn't. There is no reason for the thousands of natural disasters every year, for drought and war and famine. They serve no useful purpose.

And there is no reason for someone having to live with chronic fatigue syndrome. It is not ennobling, it doesn't make you a better person, there is no grand plan behind my or anyone else's illness. So that's not what I am talking about when I talk about what I have gained. I have gained because I have been alive for the last fifteen years, and happened to have CFS.)

I still have a family, that I have leaned on when times were worse than this. I have my four or five best friends, who I haven't lost. I still have the ability to just about make a living, tenuous though it is. I can still travel, occasionally.

My brain function has been hit, especially my short-term memory, but generally it more or less works. I can still teach, write, blog, make up stories for my nieces, learn languages.

And what I have gained, I suppose, is a realisation that it is important to enjoy the good moments - whatever they may be - when they arise. When your life is limited and constrained and boxed in, then those brief shafts of light become all the more precious.

This sounds trite, I know, but it isn't any less true. Brief moments of pleasure, time spent with friends, being able to play with my two nieces, who I adore, travel, however limited, experiencing anything novel, good food, meeting someone new, discovering an interesting blog, a film or book that moves me.

Before I was sick (if I can remember that far back), I took a lot for granted. I was young, and thought that aging was for other people, that I had all the time in the universe. Now, I have the intense feeling of time passing, and now try to hold on to every good thing in my life, and savour it, and appreciate it and experience it as it happens.

I know what it's like to be much worse than I am now, and also that with a bit of bad luck and bad management, I could be back in the horrors again.

So there has been a lot of loss. It is important to acknowledge this, but not to focus on this, if possible. It isn't always easy, but it is necessary.

A HIDDEN LIFE

The majority of people I know don't know that I have chronic fatigue syndrome.

In a way I am lucky that I can pass for a healthy person, I am not so affected that I am prevented from being out in the world, at least part-time.

And it is not as if I have been deliberately hiding anything. It's just that with people that I don't know really well, it just hasn't come up. I meet them socially, or in a work setting, and, because I have been managing this condition for so long, I have usually rested enough to be able to function more or less normally, at least for an hour or two.

Though it is true that I am not overly revealing about my state of health. It sometimes seems like too much work, telling people about ME. Explaining the ins and outs of the condition, how it effects me, the causes and treatments and all of the politics of it, is exhausting in itself.

And it is so easy to misunderstand, as there is so much misinformation out there about CFS. Someone may have half-heard about one misguided report, like the one inThe Sunday Times last week, and begin to believe that you are some kind of crackpot.

There is also the fact that if people don't know that I have this condition, then for the time that I am with them, I can pretend too. It gives me a space where I can be, at least temporarily, how I would be if I were well.

So I think that that is the key. It's almost as if if people don't know about my condition, then I can, for a short time, be as they see me, a reasonably active, healthy person.

Yet the truth is that I am in a way playing a role. There is this whole other truth about my life that casual friends and acquaintances don't know about. They don't see my periods of exhaustion, or don't realise that if I meet them in a pub then I have rested a lot of the day before to be able to make it there.

They don't see me struggling with food and intolerances, and they don't see all of the medications and supplements I take each day. They have no idea about the controlling force in my life, the obstacle around which I have to organize every other thing I want to do.

I am a half-ill, half-well person, and most of the people I know only see the healthy side. And that in itself is a difficulty, as it limits how close you can be to people if they only know half of you.

But I don't see a good way around this. If I do manage to summon the energy to go out at night, or to any kind of social event, the last thing that I want to be talking about is CFS. And so in my day to day life the opportunity simply does not arise to talk about what is in essence the most vital part of my story.

For example, someone I know recently suggested that I should do the Camino de Santiago, where people walk twenty kilometres a day on a journey through northern Spain. I couldn't even begin to explain to her how utterly impossible even the idea of this would be for me. I simply didn't have the energy even to begin the explanation.

So I go on like this, living an almost secret life. I imagine to a lot of the people I know I must appear quite opaque, someone who is all surface and no depth. I think many people wouldn't really be able to grasp the idea of me as dealing with illness when they see me as someone who teaches, who has a social life, who in fact organizes events in a voluntary organisation I am involved in.

I can do all this precisely because I have adapted to my lack of energy. But the truth behind it is hidden, and by necessity will remain so. CFS is just not something that I feel I can explain in just a few sentences to someone I don't know well. The impact is too enormous. So this is the way I am now, living my private, reduced life at home when I rest, and pretending to be someone that I am not when out in the world.

It at times appears surreal, and makes me feel a bit detached from those around me. But I can't see another way of approaching my everyday life.

SO HOW DID IT ALL BEGIN?

I suppose I have to address this topic, eventually. I am reluctant for a couple of reasons.

One is that it is sixteen years ago, now, and feels like ancient history. The other - and probably more important reason - is that I know now that if I had done things differently then, I could have avoided a lot of the problems that came later. It's difficult looking back and knowing that fact.

It began in 1997. I was living in Portugal, teaching English, twenty-five years old. The previous year I had been living in Iceland, and began getting these sore throats that took ages to clear, and which really took it out of me.

This continued in Portugal. Any time I went out late, or drank too much, I would inevitably contract a cold, a chest infection or a sore throat two or three days later. I initially tried to continue working through them, but eventually ended up having to take a lot of time off to recover from my various ailments.

It was a very stressful time. I was living in a foreign country, getting ill all the time, and then developed stomach problems, reflux, bloating. I later discovered that it was largely down to a candida overgrowth, because of the all the antibiotics that I had been prescribed, but I didn't know that then.

1997 was a horrible year, yet it was my last pre-CFS year. I was getting these constant infections, taking a few days off, returning to work before I was really better, and then getting ill again. My immune system felt like it was moving at snail's pace.

So the illness created stress, which in turn made me more prone to getting sick again. I crawled through most of the year, with some periods of being well before being hit again with another infection. Eventually, at the beginning of December, I got a cold. The symptoms passed in three days, though the fatigue didn't. I ended up managing to work through that month, I don't know how, and made it to Christmas, when I returned to Ireland.

I was still exhausted, though began to feel a little better with rest. And then came the nail in my coffin.

I decided to get my tonsils out. I felt that I had to do something, and seeing as the majority of the issues I had were in the throat, I figured that the tonsils would be a place to start.

I had the operation in early January, and nothing has been the same since. I don't mean to say that there was anything wrong with the operation, by all accounts it was perfectly standard. The problem was that I was suffering from what was then post-viral fatigue. Some energy had begun to return during my three weeks off over the Christmas period in Ireland, but I was still a long way below recovered.

I believe that if I had just given myself another month of rest, before putting my body through such a trauma as an operation, I would have been healthy enough to go through it as anyone else would.

Yet I felt that I had to get back to work, and went through with it in early January. I was exhausted after it, and wasn't feeling any better over the next weeks. I began to spiral down, sleeping fourteen hours a day, exhausted when I was actually awake. Any kind of exertion seemed to totally wipe me out. For six months I was in bits, and had no idea what was going on.

And that was that. I made a partial recovery, got back to full time work eventually, had relapses, made other partial recoveries, more relapses, and fifteen years later, here I am.

The onset of this condition for me was clearly down to a number of factors. There was the combination of my slowly collapsing immune system and constant infections with the immediate trauma of the tonsilectomy. Those two factors have brought me to where I am today.

It is hard to look back on it, as it was all avoidable. If I had known then some of the things I know now, I could have saved myself.

THE PERRIN TECHNIQUE (CTND).

I saw Raymond Perrin last August. I was into about week nine of a proposed twelve week course of treatment, and nothing had shifted, I had had no real reaction.

Raymond Perrin is a doctor, though his doctorate is in osteopathy, not medicine. He has worked in the area of ME for a couple of decades, I think, and has developed his technique over that time based on research that he has carried out.

We got off to a rocky start when he repeated the questionnaire that the therapist had done with me in my first visit. I was told to answer without thinking to a list of symptoms he read out, giving each one a grade from one to five. I really spent almost no thought on answering, though he seemed to take it seriously, and told me that I had actually slightly improved, according to his questionnaire.

The truth was that I hadn't improved at all, and I knew that. I didn't need his totally unscientific list of questions to tell me how I was feeling.

The next thing that he did was to check that I was doing the home exercises properly. It turned out that I was rushing some of them, and was also not doing the head and neck massage often enough. My therapist had told me to do them once a day, Perrin said that I needed to do them three times daily.

I sensed a certain amount of impatience from him. There was an element of blaming the patient for the failure of the therapy, as if it were my fault that I wasn't feeling any better. I had just driven two hours to see the man, and was not in the best of moods.

It didn't improve our relationship very much when I told him that I hadn't bought his book. I was advised to do this at the beginning of my treatment, and I purposely didn't do so. My reasoning was, I'm already paying a lot of money for weekly treatment, if that doesn't help me, reading his book isn't going to make any difference.

He went on to do the same treatment that my own therapist had been doing, as well as some manipulation of the back, which he said was very stiff. He gave me an extra exercise to do, that of alternating hot and cold compresses on the small of the back, which was supposed to loosen up my back and so encourage drainage.

In fairness, I did find him eager to help, and he did give me his card with a personal email address to get in touch if I had any questions.

I went away and increased the frequency of the home exercises. It began to take up a lot of my day, all of this home treatment. I continued with the weekly sessions with my therapist, all the time waiting for a change, an improvement, even a worsening, anything. And nothing happened, and continued to happen.

I gave it fourteen weeks. Originally I was told that I should begin to see some change by week twelve, but I wanted to be absolutely sure. I was disappointed, but at that stage not surprised. Really by a few weeks in to the treatment I had an idea that this was not going to do anything for me.

My experience, however, is not shared by everyone. Dr Perrin himself claimed that 80% of people he treats experience some kind of improvement. I have looked for some substantiation for these claims, and actually more objective studies give a figure of about 50% of people who get some benefit from the technique.

That in itself makes it worth a try, if you can afford it. It probably cost me, including the cost of travel, over €1000. I was hopeful at the beginning of at least some small improvement, and so the long slow realisation that I wasn't going to get anything from it was tough to take.

Yet I don't regret giving it a go. It is one more thing I can tick off the list. And it apparently does help some people. Unfortunately, I was one of the unlucky ones.

(For more on this, check out the first post, The Perrin Technique)

THE SUNDAY TIMES ARTICLE.

The Sunday Times in Britain published a story last week about ME. It was a long piece in the magazine.

The main point of the article was that some scientists and psychiatrists who promote the "ME as a psychological illness" agenda were being harassed and threatened by ME activists.

The writer, Michael Hanlon, explored the controversy around CFS/ME. The central question is whether it is a physiological illness with a physical cause, as ME activists claim, or whether the condition is a psychiatric one, with the cause to be found in the mind, as some psychiatrists believe.

Seemingly, some of the latter group have been threatened and verbally abused after explaining their positions.

The writer does offer some element of balance, suggesting that perhaps the ME activists have a point, that there is more to the illness than simple psychology, but in general he comes down on the side of the "ME is all in the mind" school. In fact, he doesn't talk to anyone about the physical evidence for the fact that it is much more than just a mental disorder.

The story is horrifying in more ways than one. Firstly, the idea that people would ring up scientists to threaten them is bizarre and worrying. Some scientists are reported to have security.

And in truth the talk about "the extremists" didn't really surprise me. I have been floating around internet forums on ME for about five or six years now, and I have come across a lot of the intolerance from the hard-core activists. There is something religious about them, as is mentioned in the article, a complete inability to accept the idea of any programme of exercise or psychological support to be useful in treating ME.

There is a fundamentalism about them that is worrying. The fact is that CFS/ME is a mystery, and is in all likelihood not just one condition. There are many different symptoms, and a range of likely causes, and so any group that wants to dictate what can and cannot be tried is not helping sufferers.

In fact at the beginning of my condition I did a course of graded exercise, which did help me get out of the hole that I was in initially. It was not a cure, but it was a help in getting me out of a bad spiral of oversleeping and under-activity that I had gotten into.

I have also had a form of Cognitive Behavioural Therapy (CBT). Again it was when I was at a low point, and helped me cope, and to come out of a dark place that I was in.

So these approaches can help some people. I suggested this on a forum a couple of times, and some of the extreme responses that I received were surprising, to say the least. There is a tendency among some sufferers to believe that their form of the illness is the only one, and they react badly to any idea that psychological support or graded activity can be of help.

Yet the truth is that these slightly intolerant sufferers are in the minority. And one of the main problems with the article is of course that the writer gives the impression that extreme and irrational responses to disagreement is par for the course. After reading the article it would be easy to suppose, for someone who didn't know anyone with CFS, that we were all a bunch of crackpots, deluded and willing to react violently against anyone who disrespected us.

In fact, though, Hanlon's own figures show how tiny the number of problematic figures in the ME community in the UK is. He quoted an estimate of fifty extreme activists. That's fifty out of an estimated 100,000 people with CFS. That is literally 0.05%. A drop in the ocean. Because of five ten thousandths of our number, we are all branded as lunatics who have some kind of desperate need to be considered ill.

Michael Hanlon, the writer of the piece, uses words like "harassment," "bizarre", "intimidation" and "vitriol" to describe both the debate and the response to it by some ME activists.

He says that " there was outrage from the "community"" when Professor Blakemore decided that a majority of funding for ME research would be put into researching psychological causes. Well of course there was "outrage". Outrage is a rational and normal response to a decision and a policy that you find outrageous.

Hanlon doesn't seem to get it, or even want to get it. The anger from the direction of people with CFS is completely understandable. The last line in the piece is about the extremity of the anger, and the heated nature of the debate. He says " Perhaps someone should be brave enough to try to research its cause."

Well the cause is not exactly a mystery. Anger is a totally normal response when you are confronted with a medical establishment which is bent on twiddling its thumbs while you are doing everything in your power to find some relief from a condition that has destroyed your life.

Hanlon tries to make out that the fact of us being angry is proof of how irrational and unbalanced we are. 

Well anger is an absolutely human response when you are being told that to recover from this life-destroying illness all you need is to change the way you think, and to do an exercise programme. It is natural when findings of physical abnormalities in ME patients are completely ignored, and when the evidence of people being made much worse by exercise is disregarded as irrelevant.

The basic mistake that Michael Hanlon makes in his piece is this. Sufferers of ME and CFS are not, as he seems to think, worried about the shame or stigma of having a psychological condition. We are not worried about what people will think if they discover that our illness is mental.

The reason that this is so damaging is that is stops us getting better. If we are treated as having a psychological condition, when we don't in fact have one, then we are not going to improve.

We want to get better. And when the medical establishment misunderstands the nature of the illness so profoundly, then this ultimate goal, a full, healthy life, becomes almost impossible. That's the key to the anger, it's not difficult to understand.

I have had graded exercise and CBT, the treatments proposed by the psychiatric lobby. They both helped a little in their time, but were not a cure. I still have chronic fatigue syndrome, my life is still limited and a struggle, even after their recommended approach. I don't think it is unreasonable of me to be angry at this fact, and to want the situation to change.

THE PERRIN TECHNIQUE

In recent times I have found myself working as much as I can manage from September to June, saving some money, and then trying out some therapy or other during the summer.

Last summer it was the Perrin technique. This was developed by Raymond Perrin, a doctor of osteopathy in England. It has a number of elements to it, but the main one is a kind of targeted massage to clear the lymph ducts and so aid detoxification. Perrin's belief is that CFS is caused by blockages in the lymph ducts, which are the body's way of eliminating toxins, viruses and waste.

The liquid that carries all of these toxins away is called lymph. In Perrin's view, in ME/CFS, because of a trauma or stressor on the central nervous system the lymph ducts get blocked and the lymph no longer carries toxins away from the body and into the liver. Instead these toxins are pushed back up and towards the brain where they cause many of the symptoms experienced by sufferers of CFS.

I found a therapist that used the Perrin technique in Ireland and made an appointment to see him last June. He explained that the treatment would involve weekly visits for at least 12 weeks, and thereafter fortnightly and finally monthly. He also suggested that I would be substantially recovered from my symptoms in twelve to eighteen months, and was confident that he could help me.

There was an initial appointment to assess my condition. One part was to answer a long list of questions about my symptoms and their severity, trying to grade them and to quantify my condition. This questionnaire I found mostly pointless, I was asked about 40 different questions and told to answer without thinking, rating each symptom on a scale of 1 to 5, depending on how it applied to me.

The symptoms ranged from "dry mouth" to "frequent urination" to "muscle pain." A lot didn't really apply to me, or else only vaguely, and also there was no mention of certain problems that I do have, like food intolerances. My answers were totalled and then used to offer me a grade as to how severely I was effected. I was given a 6 out of 10 and told that the idea was to get me up to 9 or 10 out of 10. Frankly I found the assessment procedure to be a kind of weak attempt to give some kind of scientific credence to the process, while not being at all scientific.

Anyhow, I began my weekly appointments. This was tough as I had to do a two hundred mile round trip in the car every week to see the Perrin therapist for half an hour. This was a major investment of time and energy for me. The first appointment cost €150, and thereafter it was €50 a time, plus the €40 or so it cost for petrol.

Each session consisted of the specific lymphatic drainage massage, which was mainly on the chest and back, massaging upwards towards the clavicle, where the lymph is supposed to drain away. There was also some cranio-sacral massage, which worked on specific points on the head, the idea being to aid drainage from the brain.

I was also given a set of daily exercises to do at home, basically reproducing what was done in each treatment session, with a few extras. I did these religiously every day, and didn't miss a week of the treatment, despite the distance I had to travel.

My therapist was friendly and helpful, though he did seem very anxious to make sure I knew how effective the treatment had been shown to be. To be honest he protested too much, it became a bit tiresome every time hearing about this breakthrough with a certain patient (he never named his patients to me, I stress), or hearing about whatever new research was being done which showed how well the treatment worked. It smacked a little of desperation.

Still, I kept it up. I was told that I may feel a lot worse at the beginning, as the toxins left my system, but in truth I had no real reaction. I felt neither better nor worse. This went on for seven or eight weeks. No reaction, no change, no improvement.

Around week eight or nine, I was told that the man himself, Raymond Perrin, the originator of the technique, was coming to Ireland to give a talk and would be seeing patients. I booked an appointment with him. I was hoping he would have some ideas to get some change happening. At that stage I still held out some hope for improvement, but it was fading fast
(For the continuation, check out the following blog post here. )

SO HOW EXACTLY AM I?

So day to day, how exactly does Chronic Fatigue Syndrome effect me?

I have been asked this a number of times, of course, and I always find it hard to answer. This is because, after fifteen years with this, living with CFS is now the new normal for me. I can hardly remember anything else. People ask me if I am effected this way or that, but it takes a real effort to recall my life pre-CFS and to try and figure out how I should be feeling.

The thing is that I have organised my whole existence around adapting to this illness. I have a routine that helps a lot in coping. I get up at approximately the same time every day and go to bed at the same hour most nights. I eat regularly and healthily, don't eat any sugar, and don't drink tea, coffee, soft drinks or alcohol.

I have a nap every day, just 30 minutes before lunch, but it makes a big difference in what I can do. Sometimes I will have another nap around five, if I have a particularly busy day, just to allow me to function.

And I pace myself. The golden rule of .... activity - rest - activity - rest - activity - rest. I teach part time, private classes, some night classes. I have been able to organize my schedule so that I may have one class in the morning, then one in the afternoon, and a night class around 8pm. This would annoy some people, having work so split up over a day, but it is the only way that I can function.

Between my scheduled classes and activities I prepare classes. With the rest of the time I shower, watch TV, read, write, blog, eat and rest. Everything in moderation, nothing for too long, trying to change activities or rest every half hour or hour.

It may sound tedious or irritating or empty to other people, but it is literally the only way that I can survive, and I have grown used to this by now. At the moment I don't mind my life, limited though it is. It is at a level that I can cope with. This is a forward step. There have been times in the past when I have hated my life.

I am able to go out now, socially, to bars, cinemas, nightclubs occasionally, though I find that I can't stand for long periods, and tend to come home about one or half past. I have had later nights, and can do it, though am fairly drained the next day and so tend to avoid doing that.

I am also able to travel, though again with limits. Air travel is exhausting, with all the standing in line and walking from terminal to gate. It's doable, but not something I relish. Driving any long distance is tiring, anything over about two and a half hours leaves me not fit for much else that day.

There are also some other problems, in addition to the fatigue. I have a range of food intolerances, such as cow's milk products, gluten, corn, various cooking oils, so if I eat any kind of quantity of these I can get fairly dodgy stomach symptoms. I get occasional headaches, have trouble standing for very long before my blood pressure drops, and experience sleep disturbances at times. I also have prostatitis, which means I may have to got to the bathroom more often than most people.

And my immune system is clearly compromised. If I overdo it I inevitably end up with a cold or flu, and these tend to wipe me out completely. The effect of a simple cold on my system is fairly extreme. I am usually housebound for a week, off work for ten days at least, and really don't feel "normal" for at least two weeks. The common cold hits me like a sledgehammer.

So I am operating at somewhere between 60% and 70% of full, pre-illness capacity, though I can't really be sure about that as it is sixteen years since I was in any way healthy. It is enough for me to have some kind of limited life, and for many people who know me to be unaware that I have CFS.

Yet my life is limited, and everything I do is dependent on my energy levels and state of health. I live the life of a half-healthy, half-ill person. Everything is compromised. There's no way I can work full-time, and find it difficult to establish any kind of romantic relationship. If I don't improve, there are still many normal things that I will most likely never do, like have a career, have children, own a house, save for a pension.

I have reached a stage where I can just about cope with what I have constructed as my everyday life, though out-of-the-ordinary stressors leave me struggling. But it is still limited, and basic things are still very often a huge effort. And frustration is a constant, frustration at my limitations, at the symptoms that I have that I can't do anything about, at the lack of control in my life.

No life is without frustrations, but life with chronic fatigue syndrome is one compromise after another while you try to eke out what ever bit of useful existence that your limited energy will allow.