The ME/CFS Society of NSW Inc.

About The Book

Leigh Hatcher is Vice-Patron of the NSW ME/CFS Society, well-known presenter on the national pay-TV 24-hour Australian News Channel, Sky News Australia, and a freelance publisher and writer. A Sydney resident, Leigh is married and has 4 children, aged 21, 20, 18, and 14.

Leigh remembers the exact time and day he suddenly fell very ill with an unusual viral hepatitis-3pm on January 19 1998. He lived with a severe chronic post-viral fatigue condition for more than two years ("in the wilderness of CFS", Leigh describes it). He has since regained enough of his prior exceedingly good health to return to a very active life. Leigh recognizes, however, that he has not completely recovered to his pre-1998 health.

Leigh has turned the 0.5 million words recorded in his diaries into a short (120 page) highly readable book, 'I'm Not Crazy, I'm Just a Little Unwell'. His book is also available as a 'Talking Book' CD and as downloadable MP3 files. The CD is a "labour of love" by Leigh who accepts the limited ability of moderately and severely affected ME/CFS patients to read at all, or for any length of time, due to visual disturbances.

The book has a preface, nine short chapters-

• 'Into the wilderness'
• 'In the fast lane'
• 'Just get over it'
• 'Into the pit'
• 'Flickering light'
• 'Hasten slowly'
• 'Turning the corner'
• 'A new life'
• 'A fall with grace'

and an appendix: 'Meet me where I am' - Caring for those with chronic fatigue or long-term illness.

The recommended cost of both the paper and CD versions is $19.95. Leigh launched his new book and CD on Monday May 9 2005 in the NSW Parliament House in conjunction with the official launch of ME/CFS Awareness Week.

Leigh has also launched a website (www.notcrazy.net ) where you can read and listen to parts of 'I'm Not Crazy, I'm Just a Little Unwell'. You can also order Leigh's book and CD from his website or by calling the Society office during business hours.

About Leigh

Mr. Leigh Hatcher, who is a presenter on SKY NEWS (pay television) and has now recovered from a severe bout of ME (Myalgic Encephalomyelitis)/CFS (Chronic Fatigue Syndrome), is also Vice-Patron of the NSW ME/Chronic Fatigue Syndrome Society of New South Wales Inc. and a frequent advocate for people with ME/CFS. He spoke about his personal experience of living with, and recovering from, ME/CFS to an audience of 70 for Awareness Week 2004.

Leigh can remember exactly when he got ME/CFS - at 3pm on January 19 1998 whilst on holidays with his family. His feelings at that time - like being "run over by a truck"; being "toxic". Prior to this date, Leigh lead an extremely active and successful life balancing his favourite recreational activities - "plenty of surf, sun and sleep" with his very busy television life (10 years of stressful deadlines and travelling across time zones working for Channel 7).

He was first diagnosed with an unusual viral hepatitis (not A, B or C) as his liver function tests were initially very abnormal. He stated he was fortunate to link up with Dr. Robert Loblay of Royal Prince Alfred Hospital, and Dr. John Darcy, whom, Leigh believes saved him "months of time" searching for diagnosis and appropriate treatment. Leigh's diagnosis from Dr. Loblay: a 'Post-Viral Fatigue' state. When finally diagnosed, Leigh stated he felt "liberated" by now having a label for his chronic ill-health.

Leigh lost 1-2 stone in 3-4 months with his viral hepatitis. He stated that, for him, rest did help in the early stages. He suffered daily "crashes", very poor temperature regulation (high summer was worse for him than winter), irritability, 1-2 hour "flashes" of feeling normal and testing that went "on and on".

However, Leigh's greatest suffering, and the "worse part of the illness", was the "all too often misunderstandings and misjudgements" of people with whom he usually associated. He was told by a number of different acquaintances that "he can't or won't cope"; that his job, which he loved, was to blame; that he was really a "fraud" and not sick at all; that his illness was due to some "unconfessed sin" not yet dealt with. Leigh's advice to the audience in how to deal with any similar negative comments: "unfortunately you need to find new friends". Despite such negativity, Leigh remained hopeful, optimistic, purposeful and occupied throughout his illness, studying theology full-time for a year as he did not suffer the "brain fog" which affects many people with CFS.

In his first year of illness, he did not have depression ("by a number of specific measurements"). However, 13-14 months post-onset, Leigh accepted that he might be suffering a reactive depression to being chronically ill with no idea of when recovery may occur. He started to take anti-depressants (SSRIs), to which he "reacted very badly", he told his audience.

One Saturday morning, after he had collapsed with acute abdominal pain and became unconscious, Leigh decided it was "well past the time to take ownership" of his illness -a decision which was a significant turning point. He learnt to recognise, respect and manage his own energy limits; to "not go crackers with the occasional good day, and just blow it". After a 5 hour glucose tolerance test had revealed abnormal sugar and insulin levels, Leigh commenced a 'diabetic lifestyle' with graded exercise. He improved in health within two weeks, and became significantly better, but not totally well, over time, returning to free-lance work within two months and then to his old job reporting for the Channel 7 Network within five months to cover the Sydney Olympics full-time from August to October 2000. On October 21 2000, he read his first news bulletin with SKY NEWS, a position he retains to this day.

Celebrity Profile - An Interveiw

[Editorial Note: Reprinted from pages 13-14 of ME AND YOU Volume 81 June 2002. ME AND YOU is the quarterly journal of the ME/Chronic Fatigue Syndrome Society of New South Wales Inc. PO Box 5403 West Chatswood NSW 1515 Tel; (02) 9904 8433 Fax: (02) 9904 8435 Email: mesoc@zip.com.au Website: www.me-cfs.org.au.

In 2005, Leigh is still working for SKY News. He counts himself lucky to have recovered 95% of his pre-1998 health by 2002, a far greater improvement than the 80% recovery in 3-5 years predicted in 1999 - Ed.]

We welcome Leigh Hatcher as our new Vice-Patron. Leigh currently works as Presenter on SKY News even though he was diagnosed with CFS in 1999. He has now recovered from the illness and has returned to his previous level of activity.

Leigh, can you tell us about your background?
Since 1973, I have worked as a journalist and newsreader - first in radio, then in television. My job has taken me around Australia, with two postings in the Canberra Press Gallery and two postings in Adelaide. I also worked in London for two years as Seven Network's European correspondent and, for a decade, as a senior journalist/news reader in the Seven Network's Sydney newsroom. I was the Network's 'Olympic Reporter' from the early days of Sydney's bid for the 2000 Games.

At what stage in your life did you develop CFS?
I was 43, and on the 19th of January 1998, I came down with a viral hepatitis. It was neither 'Hep-A', 'B' or 'C' - just a virus that went to my liver. I got over that in a month, but then remained unwell. It was very clear to me that my health, and the state of my body, had changed significantly. After 12 months of inconclusive tests, ranging from a sleep test to electric shocks!!!, I became a CFS sufferer.

How did life change for you and your family as a result of having CFS?
Within six months, and after repeated attempts to return to work, my doctors said I would be doing well to get back to 80% of what I used to be within 3-5 years.

People used to often ask me what my illness felt like - "Is it that you're just tired?" I wish! I would tell them that, in my case, it felt like I had a permanent dose of flu, combined with wave after wave of blood sugar crashes. No two days were ever the same but, I must say, there were a few where I understood exactly how an American professor, who treats only AIDS and CFS patients, describes CFS. He says a CFS patient on a bad day resembles an AIDS patient two months before they die.

My family had to learn to do without me. My wife had to get used to turning up to lots of things alone. My four kids had to often tread on eggshells or just to keep quiet - because "Dad's in bed again". It was all too frequently very painful. They were magnificent and I owe them heaps. I often felt they were the only ones who truly understood how sick I was, because they alone could see every shade of the illness. It was a very, very hard time for them. But sometimes it has its compensations - my 11 year-old daughter was able to beat me in an Indian arm wrestle!

What sort of reactions did you get from people when they found out you had CFS?
Most people clearly didn't know what was going on, which is hardly a surprise - neither did I!

What became difficult was the way most sought to impose their own diagnosis, and a particular view of me as a person, on my illness. They obviously regarded it as a 'you can't cope' or 'you won't cope' illness - or that I was depressed. By a number of specific measures I was not depressed, and maintained a purposeful and optimistic life, despite my very significant physical limitations.

For me, the worst thing about CFS - beyond the very considerable physical suffering and personal and professional loss - was the shocking misunderstanding of the illness and of, therefore, the sufferer. I was often urged to 'psyche yourself out of it', which assumed I had psyched myself into it. To imagine that I had chosen such a life of suffering and loss, as an act of my will, was deeply hurtful.

There was a small number of people who were marvellous. They accepted me where I was - no pre-judgments, no amateur diagnosis - just acceptance and understanding. These were often new friends, because so many of my old friends just didn't get it.

How did you overcome CFS?
In the midst of my illness I felt I was able to deal with it well, thanks to a strong, resilient and authentic Christian Faith. That's what's kept me purposeful … confident … and optimistic.

2 ¼ years into my illness, a friend tipped me off about a 5 hour Glucose Tolerance Test that they had taken. This test measures both blood sugar and insulin. It showed I had abnormal levels, still under the broad umbrella of CFS.

As a result, I began to live, eat and exercise like a diabetic and I had a very substantial improvement in my health enabling me to undertake a graded return to work. Within 5 months, I was back at Channel 7 working on the coverage of the Sydney 2000 Olympics.

I would emphasise strongly that this was how I made it out of CFS. As we all well understand, no two people are ever the same with this terrible illness.

Does CFS still impact on your life?
Everyday I know that my body has changed. As long as I live, eat and exercise the right way, I'm fine. I still struggle to get out of bed in the morning, whereas before I would bound out and go off and swim 40 laps of an Olympic pool at 6 a.m.! I have to look after myself more that I have ever had to before. No-one seeing my schedule or knowing the nature of my work could tell there was anything different with me - but I know clearly my body has changed.

Why is assisting the Society so important to you?
I feel passionate about being whatever help I can be. I feel enormously privileged to perhaps be one small voice, speaking on behalf of those who suffer both with this illness, and as a result of it.

I know what the physical suffering is like. I know the deep hurt you feel when people think this is 'all in your mind', or you've just 'lost the plot'.

I'm now privileged to be able to speak as one who has a demanding and somewhat of a high profile job - that gives the lie to this being a 'you can't cope' disease. If I can do anything to communicate the reality and mystery of this illness, and give heart to those suffering from it, as well as their families, I would be honoured.

You've just written a book about your experiences, 'I'm Not Crazy, I'm Just A Little Unwell', tell us why.
It's been a true labour of love, and being my first book, it's been like giving birth! I hope it can be that voice for those who are not only suffering this terrible illness, but more particularly, suffer all the misunderstandings and misjudgements. Here's a quote from a letter I recently received from a sufferer, that I've included in the book.

"I have experienced many losses, including financial independence, but I think the greatest loss for me has been relationships. Unfortunately, the harshest judgment has come from my immediate family, including my parents . . . because in their eyes I'm just suffering the consequences of my bad choices. It is a bitter grief indeed. I remember lying in bed and thinking, 'I must have some other value than what I can do for God.' My life before getting sick was fun, fulfilling and I believe worthwhile in terms of 'ministry'. I never imagined that there would be anything better. But there is. It is to be loved and valued without being 'useful'."