During August 1994 we moved into an old house in Collingwood. The morning of the day we moved in, a poison was applied to the garden by the dodgy old-time gardener employed by the dodgy real estate agents, and naturally we weren't told about it (real estate agents are such thoughtful, caring people aren't they?). About four weeks later Tim reacted to a common anti-inflammatory prescription drug for a pulled muscle and his body started detoxifying (nausea, headaches, fatigue). At the time a doctor diagnosed the detoxification as a simple viral infection that would clear up in a few days.

About two weeks later the worst symptoms had cleared, but Tim noticed an intense residual feeling of tiredness, sore muscles and brain fog that wouldn't clear up. After visits to a couple of different doctors it was diagnosed as a post-viral syndrome, that was described as being a mild malaise following a viral infection that would last about 4-6 months (of course one doctor stated that it was all in the mind - such a logical diagnosis given an illness of acute onset). So Tim went about life as normally as possible, thinking he didn't have too much to worry about. A couple of weeks after this, Chris began to notice development of the same symptoms.

Over the next couple of months we both pushed on, thinking we had mild illnesses that would clear up shortly of their own accord. Apart from the ongoing symptoms of tiredness, sore muscles and brain fog, we both began to experience strange transient symptoms that might last a few days before clearing up - eg. indigestion, irritable bowel symptoms, disordered sense of balance, pins and needles in the hands/feet and so on. Repeated visits to doctors did not alter the initial diagnosis or outlook. At no stage did either of us receive any advice on management or treatment of the illness - it was portrayed as being something that would disappear spontaneously. We were also led to believe that post-viral syndrome and chronic fatigue syndrome were two unrelated illnesses.

By February 1995 we had both deteriorated significantly. Tim was totally confined to bed (barely capable of walking 5 metres to the toilet) with severe muscle pain and insomnia. Chris was barely coping with part-time work (having had to reduce his hours in order to cope) let alone care for both of us. With no improvement for either of us by the end of February we were left with no option but to move in with Chris's parents (a somewhat humbling experience).

By chance we heard about a clinic where doctors were using nutritional & natural therapies to treat CFS patients. Attending this clinic we managed to turn our health around and very sowly, but surely, regain our health. This was a process that took us some years, rather than a few weeks.

SYMPTOMS

The range of symptoms you can get with this illness is nothing short of extraordinary. Fortunately you don't tend to get all of them at the same time, but there is a stage where it feels like you're getting a new symptom every week and you begin to wonder if your body is about to pack it in completely. As you recover, the symptoms become less intense and gradually disappear. Some of the symptoms we had between us include (the first five in the list were the permanent/ongoing symptoms while the remainder were more transient/sporadic):

Physical fatigue
Sore & weak muscles
Mental fatigue
Poor concentration & short-term memory
Insomnia & disturbed sleep

Headache
Nausea
Food & chemical senstivities
Pins & needles in hands/feet
Sore throat
Mouth & throat ulcers
Disturbed sense of balance
Swollen glands
Tinnitus
Joint pain
Back & neck pain
Chest palpitations
Mood swings & depression
Sensitivity to light, noise & odour
Bladder dysfunction
Feeling faint &/or dizzy
Cold feet & hands
Sinusitis
Nightsweats
Irritable bowel syndrome

SO WHAT'S IT LIKE

Often people asked about what it 'feels like' to suffer from CFS. After many exasperated attempts at trying to get people to understand, we came to the conclusion that it's almost impossible for healthy people to really comprehend the severity of this illness. But we don't give up that easily, so if you really want to get a grip on this illness try and imagine putting up with one or two of the following, every day, for at least a couple of years:

1. The 'hung-over' feeling you get after a late night with too much alcohol.

2. The feeling of a low-grade viral infection or flu.

3. That really wasted, sore feeling you get after doing intense exercise for the first time in ages.

4. Where every thought and action feels as though you have to drag yourself through wet cement to get it done.

Sometimes people would say really stupid things like 'I get very tired after a day's work but I can always push on...'. Well, gee Einsteins don't you think we would have tried that trick? One of the defining characteristics of CFS, is what they call 'post-exertional malaise'. Now for those of you who don't understand constipated English, this means that any excess exertion or activity (physical or mental), makes the CFS symptoms worse. The 'excess' is obviously relative to the severity of any individual sufferer's condition.

Tiredness and fatigue are two very different conditions. Compared to fatigue, tiredness is a positively pleasant feeling, which is rapidly relieved or overcome with rest. Fatigue cannot be relieved quickly. A better name for CFS might be Chronic Exhaustion Syndrome or Chronic Christ I'm Feeling Completely Shagged & Will This Ever Bloody End & If It Doesn't I'm Going To Shoot Myself Syndrome.

HOW WE GOT BETTER

Apparently most people can eventually get better from CFS, but there is no one miracle cure or magic drug. Both of us steadily improved after starting this treatment approach, but it still took us at least 2 - 3 years to get back to living a full life.  It allowed us to make significant, continuous improvements over the months, compared with previously when we were going nowhere fast.

Apart from specific actions of herbal, vitamin and nutritional therapies, an important component of this treatment approach is about helping and allowing your body to heal itself - this means destressing, or easing the load on, your body as much as possible to allow this to happen (destressing refers not only to the obvious emotional and mental stresses, but perhaps more importantly to physiological stressors through daily dietary and environmental exposures).

This healing approach takes time to happen (ie. months to years). The best thing you can do is accept that you have a serious illness and adjust your life accordingly while you help yourself recover. Don't continually push yourself - the key is appropriate rest mixed with appropriate activity. If you have a doctor that just puts you on anti-depressants (even when you're not depressed...) and tells you it will all clear up spontaneously one day, tell them they're stupid and go find a new one who knows what they're on about. Unfortunately stupid doctors are everywhere, but intelligent ones are feckin' hard to find.  Anyway, here's what we did:

1. Living to avoid a relapse, using the '75% Rule'. This essentially says that you should only use up 75% of your available energy reserves for ALL daily activities (regardless of what stage of the illness you are at). The remaining 25% can be thought of as a buffer zone to protect you from a relapse, and as reserve energy for healing your body. Living this way is critical for achieving recovery. This means you should not be pushing yourself to the point of exhaustion. The aim is to be operating at a level whereby you can expend the same amount of energy every day (ie. not having two days of high-level activity, followed by the next two days in bed recovering). It is difficult to adapt to this notion initially as it means your life becomes very routine and structured (and you have to learn to say NO to doing things), but you do get used to it - particularly when you begin to notice the improvements that follow.

2. Using prescribed vitamin and herbal supplements. For us this included weekly injections of Vitamin C & B Group Vitamins, together with daily oral doses of vitamin C, multivitamins, multiminerals, coenzyme Q10, and various herbs for specific problems - such as evening primrose oil, echinacea, garlic, milk thistle, valerian, passionflower, dandelion, red clover, chaparral and ginseng. The dosages were altered over the course of the illness and recovery. Pharmaceutical drugs (prescription & over the counter) were avoided unless absolutely necessary.

3. Strict diet and nutrition. This involved moving to a low-stress, whole-food diet which focuses on elimination of unnecessary substances such as alcohol, caffeine, refined sugar (this not only includes sweet snacks & drinks, but also sugar in breakfast cereals, tinned food, bottled sauces, jams & spreads...etc - fortunately sugar free alternatives are available in health food shops), artificial additives & preservatives, processed products (eg. bleached flours, tinned foods), tobacco and environmental pollutants (eg. chemicals used at home). This is replaced with freshly prepared 'whole' foods (often organic) from a diverse range of food groups - this is an important point - as it helps protect against development of food sensitivities (ie. not eating the same food - eg. a banana or wheat - every day, so that the immune system gets a break from them). Essentially though, any food can be eaten (provided it is not processed/refined or full of rubbish). Drinks include only filtered water (very important), herbal teas/coffees and freshly made vegetable/fruit juices (usually 1/day or so). This may all sound too difficult and disciplined for some, and it can't be achieved overnight, but we have both reached the stage where our diet is healthier and more interesting than before. The transition period (in months) was not always easy, but was definitely worth it. You know you've really made it when a piece of carob tastes just as good as chocolate used to (yes, it happens!). The other amazing part is that now when we look at the sweet, artificial, synthetic, overprocessed and refined food we used to love, we just think 'no way'.

4. Aviodance of allergens. This involved testing for a wide range of foods and environmental parameters - our doctor used VEGA testing which is relatively inexpensive, fast and painless. Any allergens identified must be completely avoided for 4-6 weeks before retesting. If the immune system shows no reaction at the retest, the identified substance can usually be reintroduced to the diet, but never more than 2-3 times per week. If it is a true allergy (as opposed to a sensitivity), it may need to be completely avoided. Testing is conducted every few months during the early stages to ensure that no new problems have arisen. In our experience the food sensitivities were easily resolved in 2-3 months using initial avoidance of foods, followed by use of an ongoing rotation diet. The environmental sensitivities (eg. chlorine, dust-mites) generally took a few months longer to resolve.

5. Treatment for candida. We don't even pretend to understand this beast. Apparently it is possible to have candida infestation/overgrowth as well as/or a sensitivity to candida (initial allergy testing showed a strong reaction to candida for both of us). This is treated by avoidance of yeasts, moulds, sugar & refined foods in the diet, treatment with a prescription anti-fungal drug for 6 months, and daily supplementation with probiotics ('healthy' bacteria). It can take 6-12 months of this therapy to completely overcome candida problems.

6. Use of yoga and meditation. This was of immense benefit in terms of gentle exercise for the body to prevent deconditioning, as well as finding that 'inner strength' for dealing with the illness and helping with recovery.

7. Appropriate daily gentle exercise. Whatever can be done, but provided it stays within the '75% Rule' quoted above. This obviously varies with individual condition. For example, during confinement to bed it was simply a few minutes of light stretching; later on it was 20 minutes of yoga; then yoga and walking; and so on.

8. Use of appropriate therapies for associated problems. For example, we have both used chiropractic for back & neck problems; acupuncture and chinese herbs for nightsweats and disturbed sleep.

PEOPLE'S REACTIONS TO CFS

Unfortunately some people seem to think that this illness is nothing more than a bit of tiredness (like being tired all the time is such a healthy, natural state of affairs anyway.....) or that it's just like a bad flu, and so believe that if you really pushed yourself a bit harder you could speed up the recovery or be more active. Other people appear to accept that CFS is a real illness, but cannot or do not want to accept the lengthy recovery periods. Anyway, just to throw a few gross generalisations around and apply labels to people, there are three types of reactions to CFS:

(i) People who accept, or at least are open to learning about, the illness and its progress, and provide unconditional support. Generally these people have had intimate experience with CFS, are close to the sufferer and know that the individual is not withdrawn or depressed (just extremely frustrated), or simply give intelligent people the benefit of the doubt. These people are wonderful. Hang around them more often, and you'll recover quicker.

(ii) People who accept that CFS is a real illness, but that the lengthy recovery periods are in the mind. These people may have had either no experience or very limited contact with CFS. Unfortunately this group is immensely irritating (and perhaps one of the biggest sources of stress for a sufferer) because they automatically assume (ie. without asking you any questions about the illness and how you're coping with it...) that you have motivational problems, are an emotional cripple and can't think rationally. As a consequence you are constantly being told 'what is good for you' or are always being questioned about what you can't yet do (why not; but surely that wouldn't hurt you; etc.). After a few months you begin to get very sick of having to justify yourself all the time - particularly when they don't want to change their preconceived ideas and believe you anyway. Tolerate them for a while and then seek out some Group 1's before you do get depressed and want to withdraw from the world just to get away from the Group 2's.

(iii) People who don't or won't believe in the illness. Ignore them - they're not worth the precious energy. They probably believe what they see on 60 Minutes or read in a Rupert Murdoch newspaper.

When I (Tim) first got sick my family was very supportive for the first 12 months or so, and never questioned the legitimacy of my illness. That is, until a fifth year medical student went to stay at my parent's farm for a few days, and kindly informed my parents that any profound fatigue lasting longer than six months is due to depression. Suddenly I was being inundated with comments about the similarities between CFS and depression, and suggestions that I see a psychiatrist. Good old orthodox medicine, teaching students that anything that they don't have an answer (or more accurately, a pill) for, should be written off as depression.  This makes me so feckin' mad, because I wasn't bloody depressed (having once shared a house with someone who suffered from serious depression, trust me I know the signs). It's my personal opinion, but 99% of mainstream doctors really are a complete waste of space (well, unless you're having a heart attack or bleeding to death - I guess I should begrudgingly give the overpaid, self-important, arrogant twats some credit.  They're also rather good at freezing warts off with liquid nitrogen - there's a skill).

BOOKS ON CFS

Went beserk and bought a few books when we first got sick. They range from the orthodox medicine approach ('here have some anti-depressants'...) to the complementary/alternative approach. Guess which approach we prefer?

Fighting Fatigue & the Chronic Fatigue Syndrome - Dr Ian Brighthope (1990, McCulloch Publishing). Dr Brighthope is President of the Australian College of Nutritional & Environmental Medicine (www.acnem.org) and has a clinic here in Melbourne. This book focuses on the nutritional and complementary medicine approach, and provides a comprehensive overview for understanding and treatment of CFS using these therapies. Essentially covers the approach we have both used in our recovery process.

Chronic Fatigue - The Silent Epidemic - Dr William Vayda (1991, Simon & Schuster). Dr Vayda is President of the International College of Applied Nutrition (Australia) and has a clinic in Sydney. This book is similar in outlook to Dr Brighthope's.

Understanding ME - Dr David Smith (1991, Robinson Publishing). Dr Smith is a UK doctor and is/was on the UK ME Association medical advisory panel. While this book is generally quite orthodox in outlook - and in particular is skeptical of alternative treatment therapies - this book was a real eyeopener. Dr Smith claims (through his own clinical experience) that if acute-onset CFS cases are diagnosed and managed early on, recovery can be virtually guaranteed in 2-3 years. He implies that the critical factor is to manage activity levels.

Living with ME - Dr Charles Shepherd (1992, Cedar). Dr Shepherd is a UK doctor who has suffered from CFS for over 12 years. This book is very orthodox in outlook, and he spends a lot of time 'not recommending' alternative therapies (now I don't want to bag him, but.... don't you love doctors who believe that simply because they didn't learn it during their study & training that it can't be worthwhile). As the title suggests, the focus of this book is on how to live with CFS if you are a long-term sufferer.

2002 UPDATE!

Having written most of the above some years ago, it's time for some reflection and a few observations.

We've both recovered to the point where we work full-time, study part-time, and undertake intense exercise regularly, and have been doing so for a few years now.  We both consider ourselves to have recovered from CFS, but have no doubt that if we did not continue to lead very healthy lifestyles a relapse would eventually be on the cards.  What does the healthy lifestyle entail?  Extremely healthy diet, plenty of sleep, and minimisation of chemical exposures (drugs, pollution, etc).

I cannot emphasise the importance of excellent nutrition in recovering from CFS and ultimately staying healthy.  Anyone who tells you that there is nothing to be gained from moving to an extremely healthy diet is a fool.  When we were very sick and first started changing our diet, we often wondered whether it was actually making any difference.  The interesting part is when you start to recover, and feel less 'sick', you really notice what an impact certain foods/drinks can have on those oh so slightly important factors like energy levels, sleep quality and digestive problems - neither of us has any classic allergies, but we are clearly sensitive to many things.  These sensitivities not only include foods, but also some medicines (pharmaceutical and herbal), urban pollution, humidity and household chemicals.  Management of these sensitivities is an important part of maintaining our health.

We still find that there are opportunities for further incremental recoveries in our health, or at least maintenance of it.  I (Tim) recently had all my amalgam (mercury) fillings replaced - funnily enough I now no longer suffer from the large, nasty mouth ulcers that I had endured on a never-ending basis since I was a teenager.  For Chris, prevention of a candida recurrence is critical to maintaining his current level of health.  He recently had to take a course of antibiotics for an infection, which naturally killed off all the good bacteria in his gut - within a few days he started developing the classic symptoms of candida flare-up (digestive upsets, bad breath, etc).  Fortunately he now knows how to manage this (dietary modifications, probiotic supplementation) and should knock it on the head quickly.  No thanks to the dopey conventional GP who when writing the prescription for the antiobiotics, answered Chris' question about how to best prevent a candida recurrence while taking antibiotics by looking at him blankly and saying she had no idea.

So, fellow sufferers, hang in there because recovery is possible for most of us.  Feel free to drop us a line sometime if you've got any questions or want to share experiences.

A FEW RELATED LINKS

Alternative Health Links
HerbWeb
Natural Health & Longevity Resource Center
Allergy Centre
Natural & Alternative Medicine
Environmental & Preventive Health Center
HealthWorld Online Village
Vegetarian Pages Food Index
Holistic Healing Web Page
Healthy.Net Village
Herbal Index
HerbaNet

CFS Society of Victoria
CFS Reference Guide
CFS/ME Information
Beginners Guide to CFS/ME