AHMF: Submission to RACP Guidelines, case studies

Submission to the RACP CFS Clinical Guidelines Review Committee
Continued

Authors: Christine Hunter, Annette Leggo, Anne Gotsis and Maureen Stephenson

Case Studies

Case History 1: Anelie Walsh, age 18, Sydney Australia.

Below I've described the progression of my illness from 1990 to 1996, and then written a passage about living with CFS as a young person.

1990 In hindsight, it appears I developed CFS at the end of 1990, during my last year of primary school. It was the end of the year, and for 2 to 3 weeks I was away from school suffering from a virus. The symptoms were nothing out of the ordinary for such an illness - nausea, headaches and tiredness. However, it lasted much longer than any virus I'd had previously that year.

1991 In 1991 I moved on to high school. During that year I repeatedly caught viruses, which would hang on for at least a week and often longer. I was away for roughly 70 days over the whole year, and at one point missed 6 weeks of school in a row. At this time I first experienced dizziness as a symptom. It certainly disrupted my school work, but being a competent and enthusiastic student, I was able to catch up adequately, and received excellent marks at the end of the year.

My repeated illness puzzled both my parents and school; it was at this time my mother first heard of Chronic Fatigue Syndrome. However, we didn't feel my symptoms were severe enough to qualify as that disease. My doctor at the time treated my illness by running blood tests for glandular fever, which always returned negative results. I was occasionally given medicines to treat individual symptoms like headaches.

At that stage, my symptoms of CFS were: Frequent viral illness, usually involving: headaches, nausea, low grade fever, tiredness. My family and I noticed the abnormally long time it was taking me not just to get over each illness, but also to regain my normal activity level.

During this year I stopped doing ballet because the strain it put on me was too much - I had very little stamina and missed many classes due to the viruses. At school, I found it hard to explain my frequent absences to classmates. I remember one friend asking me why I couldn't just go to hospital and have an operation to make me better? I wished it was that simple.

1992 In 1992 I changed to a different high school. I went to that school, a 45-50 minute train ride away, for a week before becoming severly ill. I was sick for the next 6 months straight.

My symptoms were now: Dizziness, the above viral symptoms, 'movement headaches', and cognitive difficulties. Dizziness is both extremely unpleasant and difficult to describe; the best I can say is that it is a spinning sensation in the top of my head. It affects my ability to write, read, watch TV or a computer screen, and makes travel and motion sickness considerably worse. At it's worst I have to lie completely still and not move my eyes at all. At this time, the dizziness was frequently accompanied by balance problems, which made me sway if I stood upright with my eyes shut. I also mis-judged distances at times by, for example, walking into door frames, or hitting a wall as I turned the corner. The dizziness is always present, at varying levels.

'Movement headache' was my name for a headache I began getting in this year. It was a strong, dull ache that got worse if I stood up, sat down or moved my head strongly in any way. When standing up, for example, the pain right on the top of my head would get worse. If I tipped my head over to the left, the lower left side of my head would hurt more. While sitting totally still, the headache was in the background and unchanging.

The cognitive problems were the most baffling. Ordinarily an intelligent and avid learner, thinking was suddenly clouded and confused. I forgot things extremely easily, I mixed up words and couldn't think of phrases I wanted to use, my concentration span was extremely short and my mathematical ability almost disappeared. What most brought home how badly affected I was with cognitive difficulties occured when I was trying to catch up on maths work: I was going through a primary-school level test where I had to write the answers to 20 simple addition and subtraction questions in 20 seconds. The first question was "15 - 9", and it took me half an hour to figure out that answer!

During this period, I slept most nights from 1 - 2am in the morning to 11am or midday. The pattern seemed to change itself around, and was extremely difficult to 'go against'. Waking up any earlier made me feel especially dizzy and weak. Now, when I descend into a longer period of ill-health, my sleeping pattern begins to take on these hours.

At this time my parents and I were not greatly educated in CFS, having only heard of it by word of mouth and not read any medical literature on the subject. My cognitive difficulties were frightening and confusing, and I often feared I was going crazy. During this time I recieved a few more prescription medicines to treat individual problems: Prepulsid for repeated vomitting was one. My doctor was at best ambivalent over what precisely was wrong with me: he wouldn't commit to the idea I might have CFS, but he didn't have any other ideas either. He seemed to feel it was best to 'wait and see' what would happen next, and deal with each symptom as it arose.

My school, however, required some more long-term thinking than that, and it was disenchanting not to have any firm opinion of how my apparent illness would progress. My parents and I were also worried about what my future held, as education is so important and I was missing a great deal. When my Mum suggested I could be referred to a doctor who was knowledgable on CFS, he said if I went to a doctor who "believed" in CFS, I would be diagnosed with it; and if I went to a doctor who didn't "believe" in CFS, I wouldn't be diagnosed with it. It is difficult to hear someone describe the need to "believe" in an illness when you are suffering its effects every day.

Towards the end of my initial 6 month-long 'crash', I discovered the effectiveness of Vitamin C for treating my dizziness. If I took 4, 1000 mg vitamin C tablets at once, it significantly reduced my dizziness. This was a great relief, as although it didn't cure the unpleasant sensation, it reduced it enough to be more comfortable. I told my doctor about this, and he replied "that isn't possible"; however he didn't tell me to stop taking it, and I certainly wasn't going to. To have finally found something that reduced that problematic and sometimes tortuous symptom was a boon, whether my doctor believed me or otherwise.

Fitting in at school was difficult, but not impossible. I was shy at meeting new classmates, especially with the additional disadvantage of having to explain my illness to others when I didn't fully understand it myself. I caught up with the necessary work and finished the year with the hope of recovering over the holidays. My mathematics work suffered however, and that first 6 month absence affected the rest of my schooling - I was, and am, always catching up from the 'basics' I missed out on at that time.

1993 Now in year nine, my first term of schooling went well. I was present at school for the majority of the time, and enjoying the regular contact with my friends. Memory for time and events being affected by CFS, I have trouble remembering exactly when things went wrong that year; I think I got sick during the Autumn holidays and this overlapped into the second term. Basically, I was away from school as often as I was there (if not more), and the need to constantly catch up on work was very draining. Not only did I have to return to school as soon as I was able, I had to effectively do twice the work load - both what the class was currently studying and everything I had missed. This was something that plagued me all through my years at school.Getting to know people is hard when you see them for a week and are then absent for two weeks. Constantly asking them for their notes, and help during classes, doesn't help a lot either.

It was in July of this year I first saw my current doctor. Recommended to us as a doctor who has dealt with CFS sufferers before, my family and I hoped he would be able to diagnose me officially. After listening to my story he agreed that, yes, what I had fitted the description of CFS very closely. My relief at finally having official approval was tremendous. It might sound strange that I was pleased to be told I had a chronic illness, but it validated everything I had experienced. My doctor believed me when I said vitamin C helped my dizziness, and told my Mum and I how vitamins, minerals and health supplements have been used to help patients with CFS.

At the time I first saw him, I had become quite withdrawn and quiet; I always looked like 'death warmed over' with a very pale face and large bags under my eyes. During those first few months of treatment (which involved vitamin injections, some prescription drugs and a strict diet) my health improved dramatically. So much so, my parents and I felt I was on the road to recovery, and by the next year I would be well.

1994 Unfortunately, 1994 mirrored 1992 very closely. I made it to school for a few days and then I was sick for six months again. My doctor encouraged me to leave the school system and study via corrspondence, as this would reduce the physical stress of constant excercise, travel etc. My family and I found such a decision daunting, however my health made the decision for us. Half way through the year, my school decided I couldn't possibly catch up on enough school work to pass the School Certificate, and I would have to repeat the grade.

Although I had suspected I would have to do this (after all, you can't miss months of school, still be ill, and realistically expect to stay on a par with school mates), it was a blow. I knew the cause of my repeating was out of my hands, but I still felt extremely let down. How could I, the person always praised for being intelligent and conscientious, be repeating the grade? For the next six months I stayed at home.

During the fourth school term I studied years nine and ten work through distance education, which compared to the struggle of institutional school was wondrous. To be able to do what work I could when I could, and not be continuously catching up and falling behind, made me feel like a competent student again. In combination with my doctor's treatment and the lack of physical and mental pressure of school, my health once again took a turn for the better. By the end of 1994, I was capable of going for a short walk every morning, completing my week's school work in 2 and a half days and gradually getting back to a more normal existence. Once again, things were looking good for the next year.

1995 In this year I returned to my previous high school to repeat year ten. I lasted in good health for a term, and my second term wasn't horrendous; I missed 17 days of schoool in that first semester, my best record of attendance at school ever. I was able to do my half-yearly exams. The holidays and terms after that were almost entirely taken up with illness, in total I missed 44 days of school. I was sick for weeks on end, and I think I only went to school for a few days in the whole of term 4. My teachers were able to estimate my School Certificate marks from the small amount of work I had done, so I did graduate from the grade.

In October and November I went to see an imunological specialist. Our first appointment was a long one, and during that time he felt it would be wise if I went through a number of tests to rule out any other diseases or causes of my symptoms. He did not feel a psychiatric analysis was warranted. I stayed in hospital for a week, and had an ECG, Sleep Test, Audiology and Balance test, neurological investigation (where I answered questions and had all my joints hit with those little hammers), MRI of my brain, a Chest X-Ray and many blood tests.

My relatives and family were hoping the tests would find something, hopefully a something that is cured with one Magic Pill, unrealistic as that was revealed to be. Every test that came back 'normal' was a disappointment, although the delivery of my brain scans was livened by the specialist saying "You'll be pleased to know you DO have a brain." I suspect he uses that line on everyone.

One thing I did gain from that stay was an explanation of one of my types of dizziness (there are two) - it was being caused by low blood pressure. I was able to go on electrolyte drinks to help that. Also, my 'movement headache' was described as a type of migraine. We once again hoped much rest and taking care of myself over the Christmas holidays would improve my health.

1996 Under the apparent Curse of Even-Numbered Years, I went to school for a few days and missed the next 6 - 7 weeks. My family and I could see hanging on to the hope that I would recover enough to return to school was impractical and unrealistic, so I left my high school for good and switched back to Distance Education. This was successful for about 5 weeks before I was struck low with an illness I have still not recovered from, it now being December. Because my 'background' symptoms of fatigue, dizziness and low blood pressure are so noticeable, I suspect I am in a CFS crash.

Teachers at all my schools have been positive and encouraging of me, particularly as I was able to gain high marks in many subjects despite my absences. They have complemented me on my determination throughout this period of my life, and expressed disappointment when I have had to leave school due to CFS.

Every symptom I have described above remains. In addition to those, this year I have experienced joint pain and facial neuralgia for the first time. In fact, I am worse off now than I was when I first got sick, although I do have occasional 'windows' of good health.

When faced with a 'well-ish' day, it is hard not to do anything and everything, thus wearing myself out. The rare experience of energy and clear thinking is something I want to use to the utmost. I always pay for this during the next few days, with worsened symptoms and sometimes altogether new infections.

My doctor is a source not only of information and treatments, but also support; he is happy to hear about new research into CFS, good books on the subject and other people's experience of particular treatments. He feels I will recover from this disease, and that finding the right combination of treatments and lifestyles will be central to my recovery. It is always heartening to see him and experience his enthusiasm to find a medicine or supplement that will help me.

Because symptoms can change so rapidly (within hours and days) with CFS, I have to see my doctor regularly; usually once a fortnight unless I have a virus or other illness, in which case I go once a week. The injections of vitamin C in particular really help my dizziness and give me extra energy for that day. I have regular injections of B-12 and Gamma Globulin, which give me a very noticeable lift in energy and alertness. I often need his advice on new symptoms and strategies. I have no doubt I would be considerably worse off without his treatment, as I always suffer when I miss out tablets and don't follow the diet. Chromium tablets are one rapid-acting supplement that reduce muscle shakiness and cramps.

Being a Young Person With CFS, or Living on the Riverbank

When Mr Shaw asked me to write this submission, he requested I describe what affect CFS has had on my social life. My first thought after reading that was: "What social life?" Planning is impossible with a disease as fickle and changeable as CFS. I once read that the stages of grief are denial, bartering, anger and acceptance. It occured to me that this is a good parallel for trying to live and plan your life around CFS:

Denial. A friend rings me up on Monday afternoon, inviting me to her house on Friday night for a party and get-together with friends. "Sure, I'd love to come! I haven't seen you all in so long, it'll be great. No no, I'm fine, well, I mean, I'm quite good today, I'm sure I'll be fine on Friday. See you then."
Bartering. These are the thoughts running through my head on Tuesday, Wednesday, Thursday... "If I'm just well on Friday night, I'll rest for the WHOLE weekend, I swear."
Anger. When I wake up on Friday morning feeling, well, unsatisfactory. "Oh, no! I CAN'T be sick today! Come on, I've only been out THREE times in this ENTIRE year, just give me one day!" During Friday I'll run through denial ("No, I'm not too dizzy, it's just low blood pressure, I'll drink this electrolyte solution and I'll be fine...") and bartering ("I'll rest on the sofa in the morning and not do too much, then I'll recover...") once again, before faced with the deadline of it being time to leave.
Acceptance. I'm sitting in my bedroom too tired to pull my shoes on, and considering with dread the 50 minute or more car ride over to my friend's house. Dejectedly, I can see there's no chance I can go out tonight, and I have to ring my friend to cancel. Even though the decision is not mine to make, I must apologise for not being there, and listen to my friend complain, "But you said on Monday you'd be alright!"

Heaven knows how many get togethers and days out I've had to cancel over recent years. Gradually, people just stop inviting me, under the assumption that "Anelie won't be able to come, she's always too sick." Even though in the majority of cases I can't accept invitations, I still would like to receive them; it lets me know people are still thinking of me, and would still like to have me with them if that is possible. Unfortunately, the longer I'm away from friends and out of contact with them, the less they think of me as likely company. A friend actually told me recently that the only reason she was asking me was that no one else wanted to go.

Which brings me to the subject of insensitive comments and trying to communicate when you are chronically ill. I have been relatively lucky with the things said to me during my illness - my relatives in particular are always very kind about my limitations, and still happy to see me. A few comments that come to mind include... "You're so lucky you're sick." (Because I don't have to pick out a new dress and shoes for the school Formal.) "It must be like one long holiday, hey?" (Because I get to 'sleep in' every morning.) "But you've already had your holiday, you were sick for the last two weeks." (Said after I complained to my friend that I would have to work through the holidays due to the aforementioned absence.) "If you can watch television, how come you can't go to school?" (Actually, I don't find TV as taxing as travelling on the train to school, walking around, working, staying alert and concentrating all day, travelling home again, doing homework....) "But you're so smart!" (Said as I tried to explain my fears about my future, and describe brain fog, a.k.a. cognitive difficulties.)

Isolation and a feeling of abnormality come along with chronic illness. Many times I returned to school and didn't have anyone to sit next to in class, everyone else having found a partner in my absence. The situation would be compounded because I'd then sit by myself, which gave me the reputation of a loner, so everyone assumed I wanted to sit by myself. For most of 1993 I didn't even have a chair and desk in my home room, because every time I was away, someone from a nearby classroom would borrow it and not give it back. I used to arrive in home room in the morning and put my books and bag on the lockers, sitting on them up the back of the classroom, alone, until someone could remember where my desk had wandered off to this time. It made me feel like I didn't exist.

In recess and lunch I'd be sitting with friends and hear: "Hey, do you guys remember the time Mrs Smith told Amanda to .....", followed by raucous laughter from everyone except me. I'd frown, trying to remember, and ask "When was this?" and the group would hush as someone said, "Oh....you weren't here." That lack of shared experience is another barrier in the way of established friendship. The other dread statement in this category often happened as I first walked in to class after a period of illness: "Oh, Anelie, you're back! Have you studied?" "Studied for what...?" "The maths exam! It's on first thing this morning...!"

The "How Are You?" Dilemma.

Last night, during a bout of tossing and turning, I mentally documented how much of a pain it is trying to behave socially when you've got a chronic or long-term illness. Someone says "How are you?", and you've got two options: 1. "Fine": This is socially acceptable, after all disease is a rather taboo topic, especially at a family Christmas get together, which is supposed to be happy. 2. "A bit sick, but not too bad.": This can appear depressing, despite it's being the truth. The problem with '1' is, it's a lie (for me, I'm never totally fabulous), and I run the risk of suggesting to the enquirer my illness isn't very serious after all. The problem with '2' is, healthy ppl don't understand that chronically sick ppl can be emotionally happy and feel ill at the same time.

A particular problem is when you're asked how you are by the host, who interperets 'unwell' as meaning you're not having a good time, which may not be the case. The next consideration is detail...I guess all these thoughts have come from planning impending Christmas parties...this year has been, health-wise, one of my worst. For the last few years I've at least managed to stay in school, but this year I haven't even achieved that. I get really annoyed when ppl suggest that my lack of schooling has more to do with no will-power or drive - the old 'if you tried harder, you'd succeed' mentality. So do I go into grisly detail about my illness? List some symptoms and so on, and wait for the usual Automatic Pity Response? Or be brief and have the problems associated with option number one above.

I feel I'm stuck between a rock and a hard place, cos I can either: Mention CFS as little as possible, and watch as the conversation skates around the topic and has the air of avoidance, or talk openly, and experience the usual: the person says how sorry they are for me and then walks away! It never occurs to them I might have somthing ELSE to say, that the illness isn't my only topic. And for heaven's sake, it was them who asked in the first place.

If anyone can help me or just say "me too" I'd really appreciate it, you'll find me sitting by the pot plants with the dog.

Love Snaf [my nickname], the social misfit."

I find a good way of describing the burden of having to state how you are to every person you meet is to say: "Imagine, every time you talk to someone, you have to start off by telling them your full name, age, height, weight, occupation and whether you are happy or sad." Describing CFS can be like that because although individual symptoms may alter, over an extended period you are always at some level of illness; that, after all, is what 'chronic' indicates.

People I only see once or twice a year still feel compelled to tell me they're sorry, and express their hope that I will Get Well Soon. This year will be roughly the 4th consecutive year they've done this, and it seems a bit pointless now. While I appreciate their concern, this year in particular I have learnt to be comfortable with the idea of being a 'Sick Person'. I am less nervous about telling people the details of my illness, as I feel communication can only improve with more knowledge on either side.

I am a great one for planning, and when I was younger I had the whole first half of my life planned out: I aimed to go to school, graduate with good marks, do a university degree, live an independant existence in my own flat and get a good job which I enjoyed. These ideas gradually fleshed themselves out as I got older; I would do a Materials Science course, and I would move out of home at age 18. I turned 18 this year, and I am more dependent on my parents than ever. Being greatly self-reliant was a definate goal, and it is hard to watch friends graduate from school, get part-time jobs and learn to drive, when I can barely manage to walk around a shopping centre.

A TV show I saw once had a little girl ghost lamenting the fact that as her human friends grew older, she was perpetually the same age. She described it as like being on the river bank, while everyone else is in the river. I think this describes living with CFS as a young person very well. This feeling even leads me to not wanting any more birthdays until I recover - every birthday is a milestone of what hasn't happened, what I haven't achieved, how far behind I am in comparison to others my age.

I had assumed, when I was younger, it would be easier to live with chronic illness as I grew older; in fact the opposite is true. The older I get the more expectations there are as to what I 'should' be doing. I know there is much debate in the medical community about whether CFS is caused by depression; whenever I hear of that hypothesis, I can only think of all the things this illness does to one's life: gives you a new and frightening long-term illness to deal with, halts your job and/or education, makes relationships with others difficult, puts financial strain on you and your family, forces you to become much more reliant on others, all of this quite apart from the myriad symptoms experienced. I would defy anyone to go through this much upheaval without some feelings of sadness and depression.

Not being a doctor or psychologist, I don't know where 'sadness' stops and 'depression' begins, but the episodes of profound sadness and anxiety I have experienced are something anyone who has had a chronic and/or serious illness can empathise with. Two insignificant things are guaranteed to remind me of what I've missed due to CFS - the fact that I joined the school choir at the beginning of 1992, and never sang a note with them; and my intention, when changing to a new high school that same year, to try playing hockey. Maybe these things sadden me more because of their scale; realising how markedly different my life is from other normal teenagers is so far-reaching it can be hard to comprehend.

This year I have learnt to accept my illness, and realise that although it forces itself to be a priority in my life, it is not my whole life. I appreciate the smallest things that everyone else ignores; sun shining through the leaves of the trees in my backyard, a good book, the affection of my relatives and friends. I don't want this illness, and I want it to go away as soon as possible, but I think, until it does, I'll be able to live with it. There'll be many more days when I moan and grumble to myself over missed opportunities and unpleasant symptoms no doubt, but I'll survive them in the hope that one day they'll be a distant memory. I hope my testimony will ultimately assist other young people with CFS; if they are saved from the years of confusion and anxiety over what is wrong with them, it is easily worth it.

by Anelie Walsh.

Case History 2: Rebekah Oberin

December 1996 Melbourne, Australia

When I was little I wanted to be an industrial chemist because my Dad was. Then I decided to be a nuclear physicist because I was bored in class and it was the hardest job I had heard of. A little later, I discovered computers and the science of artificial intelligence and I wanted to study it because it fascinated me ... In 1992 I finished high-school with a score of 92% and won my way into one of the eleven places in La Trobe University's then-new Cognitive Science course. I loved it. In my first two years I studied all but one of the subjects in the supposedly-three-year degree and at the end of 1994 I was happier and more fulfilled than I ever remembered being.

Then, in December 1994, I got sick with what I thought was a very bad flu. In February 1995 when I was no better, the supposed flu was diagnosed as glandular fever, and at the end of that year I was diagnosed with CFIDS - 'Chronic Fatigue and Immune Dysfunction Syndrome'.

Since that December in 1994, nothing in my life has has escaped the effects of my illness, it penetrates every crack and crevice of my existence and leaves its mark. After I was diagnosed with the glandular fever, my doctor of the time prescribed his glandular fever cure: vitamin C injections (which had only minimal effect) and rest. I got slightly better until about June that year, then plateaued out when I was semi-recovered from the glandular fever. I was well enough to spend about half my time up and doing something, as long as I spent the rest of it at home doing something that wasn't physically demanding, usually reading or watching TV, I couldn't cope with lots of physical activity or late nights.

In September, I spent a week baby-sitting while my parents were overseas and during that time I couldn't get the rest that I needed. After the week was over I was much sicker I had been before. Since September 1995 I've been deteriorating steadily. Not fast, but definitely deteriorating. Some time around the end of 1995 I was diagnosed with CFIDS as I should have been significantly recovered from the glandular fever by then.

I've been to see three doctors (plus several specialists in various disciplines) after the first one, all of them sourced through the ME/CFS society of Victoria, so they were aware of CFIDS. I have been treated with a variety of conventional drugs such as Nystatin, Sinequan (an anti-depressant), herbs, homeopathic and naturopathic substances, vitamins, minerals, and other supplements such as coenzyme Q10 and amino acids. Almost none of these treatments have had any significant effect.

With my current doctor I've found a few treatments - primarily anti-candida medication and a very strict anti-allergy diet - which are somewhat useful, but they've only been enough to keep me from noticeably deteriorating over the past few months. I'm definitely not improving.

I live in Melbourne with two friends/family who look after me, doing nearly all of the shopping, cooking, cleaning and gardening. If I didn't have this support, I would have to move back in with my parents and three younger brothers. I know from experience (I was forced to move back home for a month earlier this year) that the amount of noise and bustle at home is detrimental to my health, so I am grateful to be able to live where I choose.

Early in 1995 I was forced to drop out of University, as after the effort of getting there I was usually too tired to concentrate on the lectures and when I returned home I was too exhausted to study effectively. I attempted to return at the start of 1996 to study just one subject. The disability service offered significant help, including audio-taping my lectures, negotiating extensions on assignments and letting me sit exams at home, but even with this help I dropped from being a straight honours student to barely passing. After first semester (which took me 9 months of study to complete) I was significantly sicker from the effort of trying to keep up with my studies and was again forced to drop out.

I am now studying a TAFE course in small business management with Open Learning Australia. It is a correspondence-only course, so I can study at my own pace and submit assignments when I have finished the relevant work. It is slow going - I study 20 to 40 minutes per day and have only just finished the first small module - but it is much easier to study without the struggle to keep up with a class while I am ill. When I am sicker, I can take a day or a week off and not have to struggle to catch up when I return. Being able to study something is important to me - if I can look back at the end of the year and know I've achieved something then I can continue to feel that the CFIDS has not beaten me completely.

I survive financially by receiving sickness benefits from the DSS. It took several months for my application to be approved - they kept rejecting it on the grounds that I was "fit for work", but eventually accepted my application last January. The sickness benefits are supposed to run out this January, so I am currently waiting see if they're going to declare me "fit for work" again or allow me a disability pension. I have been informed that the DSS actuarial tables state that all cases of CFS recover totally within two years, which is complicating things as it means that the DSS see this as a short-term problem, whereas my doctors and myself have accepted that in my case it seems to be a long-term problem. Also, the sickness benefits are not nearly enough to pay for my medications - the things that help me are mostly not NHS medications and hence cost $20 to $40 a week, so my parents pay for these which puts a strain on them.

CFIDS, despite its name, is a lot more than just "feeling tired all the time". In my case, joint and muscle pains cause more trouble than the continual fatigue does. Other symptoms I experience include headaches, stiffness, multiple allergies, weakness in my arms and legs, balance problems, deficits in short-term memory, dyslexia, learning disabilities, occasional reactive depression, gastro-intestinal problems including nausea and systemic candida infections. The "immune dysfunction" section of CFIDS means that I am very susceptible to viruses and infections which cause their own additional problems.

Since I got CFIDS, I have had two periods of a few months each where I got secondary sinus infections which took up to six courses of antibiotics to clear up, during that time I was almost completely bedridden and unable to cook or clean or look after myself at all, I often couldn't communicate properly because I couldn't remember what words I wanted, or what order they went in. During both of these times I was lucky to have family around who took the responsibility for caring for me - had I been living without this support I would have been in serious trouble.

With my current state of health, I can't attend any social activities or go shopping for more than an hour or so, and to do that I need a wheelchair or a place to sit so I don't have to stay on my feet for more than a few minutes. I am physically capable of standing up or walking for more than a few minutes (up to about half an hour before I literally fall over), but if I do, I can be sure that I will experience several days of exacerbated symptoms afterwards. And each time I suffer a severe exacerbation - whether due to doing too much or secondary infection - it seems that I never quite recover to the level of health I was at before it happened.

Since I became ill I have developed agoraphobia - anxiety disorders are known to be a symptom of CFIDS. This further restricts the activities that I can cope with because being anxious uses up a large amount of emotional energy which the CFIDS just doesn't leave me with. It seems to be linked in with the severity of my CFIDS, when I have a 'good day' with the illness the anxiety abates along with my other symptoms. I have been seeing a psychologist to help with the anxiety, she agrees with the assessments of myself and my doctor that the anxiety is a symptom - and not a cause - of my illness, and we have had significant success in dealing with it using psychological techniques.

As another symptom of the CFIDS, I am allergic to or intolerant of many chemicals and foodstuffs, including gluten, lactose, most preservatives, yeasts, moulds and fungi, caffeine, alcohol, MSG and most other chemicals. This means that I cannot eat wheat, oats, rye, millet, milk, cheese, cream, yoghurt, coffee, tea, anything fermented, or any other foods which contain these things. I also react to smog, petrochemicals, grass seeds and pollens, perfumes, the fragrances in most detergents and cleaning supplies, and many other common chemicals. Coming into contact with any of these causes some or all of my usual symptoms - joint and muscle pain, fatigue, headaches, nausea, gastric problems, rashes, etc. - to worsen for between several hours and a week. Some months ago I had to talk to a woman who was wearing a sizeable amount of perfume - I spent three days in bed recovering from the five minutes I spent talking to her and breathing in the preservatives in her perfume.

This year a team of researchers from Newcastle University announced the results of biochemical studies on the urine of CFIDS patients. They had found two urine markers which were unique to those with CFIDS and which had helped identify several sub-groups of the one disease. In November, my doctor suggested that I have the urine test done - the results confirmed that I did indeed have one of the markers specific to CFIDS, as well as several other urine anomalies specific to what they termed, "pain/fatigue patients". I have had several other standard medical tests showing abnormal biochemistry, but this was the most significant in showing - as far as is currently possible - that I have active CFIDS.

I'm about 80% bedridden, I get up for an hour or two in the morning and evening. For these "up" periods, I can sit up to watch TV, work at the computer, study, sit at the kitchen table and cook, and anything of a similarly quiet nature. I can also sometimes go shopping if I have available an electric scooter, or a wheelchair and someone to push it. When battling with a pain/fatigue causing illness such as CFIDS, ordinary household tasks become nearly impossible. On a bad day (which happens about 1/3 of the time) I cannot take a shower or wash my hair because I cannot stand up and balance for long enough to have a shower, nor lift my arms above my head to wash my hair. Chores such as doing the dishes, cooking or taking out the garbage provide similar problems. I have a high stool which stays in the kitchen so that I can cook while sitting down, but cooking still requires moving around the kitchen, and balancing on the stool, both of which are a battle for much of the time.

Getting dressed is impossible if my fingers are too painful and stiff to do up buttons or shoelaces so I wear things which do not require buttons or laces, and which are comfortable when lying in bed - tracksuits are good. Because I must be in bed so much of the day, getting dressed might seen un-necessary but I find that having some distinction between 'day' and 'night' is makes me feel better, even if the activities one undertakes are much the same. So I have one tracksuit designated to be 'pyjamas' and other designated to be day clothes.

Several months ago, I was referred to a neurologist to exclude a possible diagnosis of MS. He examined my reflexes, breathing and balance for a few minutes and then told me to sit down and said quite seriously that I was not physically ill in any way and I should be seeing a psychiatrist rather than a medical doctor. He refused to look at blood, stool and urine test results I had provided showing biochemical abnormalities, and he ignored that fact that I had fallen over on the balance tests he had given me. When he wrote up his results to send back to my regular doctor he simply omitted writing up the balance tests so the report came back saying that I was normal in all the tests. I am used to the general public being misinformed about CFIDS, but to find this attitude in a specialist doctor was very upsetting.

CFIDS leaves me at a triple-disadvantage dealing with people such as the neurologist who do not believe that I am sick - firstly, I do not look sick, I don't have purple spots and my hair hasn't fallen out so there is no external 'proof' of my illness. Secondly, my condition is variable, it is very difficult to explain to a doubter why I can get out of bed and do the dishes one day, and not be able to stand up the next day. The third disadvantage is the CFIDS itself, as being in pain and profoundly fatigued means that I am usually not in a condition to stand up for myself against people who have misunderstood or simply do not believe in CFIDS.

Despite all the problems that my CFIDS has caused I am determined that I will not let it beat me down. I concentrate on the things that I am able to do - I can study and slowly learn things, I can talk to family and friends, provide an ear when people want to talk to me, I can listen to music and unlike most people's, my life is slow enough that I can listen to the birds sing, find rainbows and watch the garden grow. Yes, I desperately want to get well, but I accept the fact that this might not happen for several years yet - having taken two years to become this ill, it is obviously unrealistic to believe that I will get well in the next month. So until such time as a cure is found, or I spontaneously go into remission, I will simply keep on doing the best I can to live NOW, and leave worrying about the future to the future.

Case History 3: Jenny

Jenny was a healthy baby. At 18 months old, she had problems with her teeth becoming decayed. The dentists blamed it on the Ribena, which clinics recommended at that time, and was later found to have far too much sugar content. Over a period she had nearly all her teeth filled, and visited the dentist on a regular basis.

Jenny was 12 when I first noticed she was unwell. We had been in Gunnedah on a visit when she developed a type of fever and vomiting. From then on she suffered from a series of symptoms including:
Severe migraines
Intermittent periods of vomiting
Frequent nose bleeds
Constant fatigue
Aches and pains in limbs and joints
Toes clawing
Unnaturally loud stomach noises
Ringing in the ears
High blood pressure
Low immunity

Over a period of 4 years we visited several doctors. Her own doctor Peter Davidson, Dr Bill McLaren, Dr Cooke (Gunnedah), Dr Des Mulcahey (Paediatrician based in Sydney), Prof Denis Wakefield (Sydney), Dr Simon Hammond (Neurologist from Orange). Dr Des Mulcahey first diagnosed Jenny as suffering from Chronic Fatigue Syndrome in 1992. On the advice of doctors such as Dr Cooke who specialised in CFS we had Dr Poe Lim replace all Jenny's teeth fillings with a non-metallic substance. Dr K Neate (Bathurst) conducted a CT Scan of the brain on November 9, 1992. This was normal.

The first signs of rapid deterioration in her condition was noticed in November 1995. Her toes had been clawing for some time but she complained of pins and needles in her feet which advanced up both legs to the knees, until she was unable to walk unaided. Dr Simon Hammond, upon extensive examination on December 21, 1995, found she had no reflexes whatsoever in all limbs. Her right foot had inverted noticeably and she had developed bilateral foot drop. She was investigated prior to her admission to Prince Alfred Hospital on February 19, 1996, with EMG and Nerve Conduction Studies. These showed slow conduction velocities and it was thought that she may have a demyelinating polyneuropathy. However, following, a nerve biopsy January 30, 1996, it showed an axonal loss.

Further examinations at RPA showed there was evidence of a generalised neuropathy worse in the legs. The results of the lumbar puncture showed White Cell Count 0, Red Cell Count 3, Glucose was 2.1 and the Protein was elevated at 1.56. She was tested for Charot-Marie-Tooth Type 1A, Type 1B and X linked Charcot-Marie-Tooth. She had a Vasculitis screen (ANA, ds DNA and ANCA) all appeared normal. She had thyroid function, B12 complement and EPG studies all of which were normal. She was examined for heavy metals and porphyrin, all were negative.Professor J D Pollard and Cecilia Cappelen-Smith decided Jenny should be given a course of intravenous Gamma-globulin over a period of 5 days.

In early April Jenny noticed her finger tips were going numb, and she developed pain in both arms. Jenny was once again admitted to RPA on May 5, 1996. Her limbs were noticeably weaker than when previously tested. She had a C T Brain Scan on May 10, 1996 and an MRI Spine Scan on May 14, 1996. Her chest X-ray, EUC, LFT, full blood count and vitamin E were all normal. Ammonia level was raised at 59 (range 15-50), and lactate 1.67 was also elevated (range 0 - 1.5). A 24 hour heavy metal urine screen was normal. Red blood cell porphyrin study was normal. She was tested for Hepatitis B and C - both of which were negative. Dr Koorey (Gastroenterologist) performed an Endoscopy which revealed Reflux Oesophagitis Grade 3. She had a bowel Biopsy which was normal. She also developed a small Bowel Ileus which was thought to be secondary to MS contin and other analgesia. She was also reviewed by Dr Ditton for pain management. He commenced Mexilitine. She was treated with a therapeutic of plasmapherisis X7. Her Vascath became infected with Staphlococcus Aureus and she developed bacteraemia.

She was discharged whilst still receiving a 14 day treatment of intravenous Flucloxacillin. Her diagnosis upon discharge was Axonal Peripheral Neuropathy of Unknown Cause. This was possibly her worst time. She was so weak and ill that even to lie in bed was an effort. She was only 48 kg fully clothed and her bones protruded quite noticeably. In desperation Dr Peter Davidson suggested we try Bowen Therapy. Jenny was unable to receive physiotherapy as it was far too exhausting for her.

Dianne Bootle (Natural Therapist) began treating Jenny on a weekly basis in June 1996. On July 12, 1996, she moved her feet slightly for the first time in months. It was like a miracle. Slowly but surely movement began to return to her lower limbs. From July to September, Jenny lost almost all her beautiful long hair. Dr Andrea Jolip-Mackay (Dermatologist) saw Jenny at Bathhurst in September. She felt the severe hair loss could have been due to extreme stress, poor health, or medication, or a combination of all three.On July 18, 1996, Jenny underwent a muscle biopsy at Orange Base Hospital and the specimen was flown to Sydney for analysis. It showed evidence of suspected Vasculitis, a Myopathy and a Neuropathy of undetermined cause.

At this time, January 1997, Jenny's health appears to be gradually improving. Although she is still confined to a wheelchair, and despite an occasional set back, she is definitely getting stronger. She is off all medication now, accept Zantac for her reflux, and is only having natural additives such as lecithin, primrose oil, and revenol. Occasionally she takes Panadine Forte for pain when necessary. She is still receiving Bowen Therapy on a weekly basis. We still do not know why Jenny's nerves began to die, or the muscles wasted away, or why they have started to re-grow. The doctors are just as confused as we are. Maybe it just had to run it's course, but we believe the Bowen Therapy has been the underlying factor in her improvement. Only time will tell.