FOOD INTOLERANCE NETWORK FACTSHEET
Chronic fatigue
Many CFS
sufferers in our network say that the diet we recommend - developed by Royal
Prince Alfred Hospital Allergy Unit in
The RPA diet
is a major undertaking. You do a trial for 3-6 weeks, followed by systematic
challenges. At the end of 3 months you know exactly what affects you, how it
affects you, and what doesn't affect you. You have to be prepared to eat very
different food - although it can be very delicious and you certainly don't have
to go hungry - but it means you can't eat takeaways and you have to give up
most fruits, which is a stumbling block for most people. And it's not only
foods, you have to avoid chemical exposures as well.
We do not
recommend other remedies because the RPA diet cannot be used in conjunction
with most other therapies, supplements or interventions, at least at first, and
in my experience, it is more effective than all others.
For people
who are doing the diet - we call it failsafe, meaning free of additives, low in
salicylates, amines and flavour enhancers - we have set up a number of email
support groups. There is one for adults, see Email Support Groups on our
website www.fedupwithfoodadditives.info.
You can write for our list of failsafe-friendly dietitians: confoodnet@ozemail.com.au
Reader Stories
[034] Chronic fatigue (January 2000)
I am 23
years old and I have had Chronic Fatigue Syndrome for two years now. I thought
I was never going to get better. It seemed the healthier I thought I ate (lots
of fruits and vegies!) the sicker I became and the more weight I lost, along
with many other symptoms including headaches, muscle soreness and weakness,
bowel disorders. You name it I experienced it! At my lowest weight I was 32kg
which was a total loss of 30kg. After being an elite athlete I can assure you
this was very frustrating.
It was only
when my fantastic doctor happened to come across another patient who had the
same problems as me that he was pointed in the direction of the allergy clinic
at
Through a
dietitian there I was put on the failsafe diet and dramatically improved within
two days. Even though this meant that I only ate fish, rice and chicken for
four months I didn't mind because I no longer had stomach pains. I am now able
to tolerate most foods on the low list although not dairy or gluten. That may
not sound like much but to me I can eat a huge variety compared to what I
started out with.
I have
managed to put on 12 kg and am almost ready to return to a bit of part time work!
I can honestly say that this diet saved my life. - Emma,
[123] Chronic fatigue (August 2001)
My husband
has suffered from chronic fatigue syndrome for 11 years. We have been following
the food lists suggested in your 'Fed Up' book for about a month and I have
noticed a huge difference already. He sleeps better and is generally having
more good days than bad. When he cheated (not on purpose) by having
"junk" food, he suffered for it the next few days, not sleeping
properly, and with the usual general aching and unwellness. The week after
re-commencing failsafe foods, he is again feeling good and positive that eating
failsafe is just the beginning of a great new life. - WA
[144] A simple diet change has made a huge difference
to chronic fatigue (February 2002, follow up from above)
I wrote to
you in 2001 about my husband's immediate improvement to his chronic fatigue
syndrome after commencing the food lists recommended in your Fed Up book. It is
now 7 months on and I just wanted to let you know that we are still following
the diet, although not as rigidly. After having tried so many doctors,
remedies, medicines, alternatives (at high cost emotionally - when nothing
worked - and $$$ !! ) over the last 12 years for his CFS - I can't believe how a
simple diet change has made a huge difference to his (our) quality of life. I
wish I had known about this so much sooner and want to just say thank you so
much for helping us get there … When people comment on how my husband has been
looking so much better, we are the first to sing the praises of "Fed
Up" because that's how and where it all began, as simple (and as hard, to
start with, but worth it ) as that !! - reader, WA
[158] Chronic fatigue (June 2002)
I'd known about
elimination diets for a while, but when a friend recommended your book
"Fed Up" I got a much better understanding of how it worked and was
motivated to try it for my Chronic Fatigue Syndrome - my brain is working much
better now than it used to. - by email
[143] How diet helped me beat CFS - Emma's story
(February 2002, a follow up from story 034 in January 2000)
"I was
diagnosed with Chronic Fatigue Syndrome (CFS) in June 1998. At the time I was
at university, plus working morning and night teaching aerobics, and training
for competition aerobics every day. As well, I had an active social life. With
glandular fever five years before, I was probably overdoing it.
I was
finally diagnosed with CFS after seven months of severe weight loss and
fatigue, and various other debilitating symptoms including headaches, blurred
vision, memory loss, inability to sleep, and chronic bowel and stomach
irritations. This diagnosis came from a wonderful doctor who I still see
regularly today. He was the only doctor not to diagnose me with an eating
disorder or a mental illness!
My weight
plummeted from an athletic 58kg to a frightening 32kg in the space of about 9
months. It seemed the more food I ate the more weight I lost. Taking a gamble,
my doctor sent me off to the food allergy clinic at RPA in
I was put on
an extremely restricted diet of boiled white rice and white fish and within
days many of my symptoms had begun to disappear. I no longer suffered from
stomach pains and wind, and my mouth ulcers were reduced in number. For someone
who loves cooking and food this was very difficult to come to terms with but
since I was facing death if I kept going as I was, I was willing to give
anything a go and stick to it rigidly. The side effects of not being
disciplined were too great and the consequences too risky.
So I
followed the chemical free diet and within one month I had started to regain
weight. It took about four months before I could start introducing the most
basic of items such as green beans or potato and it didn’t take much to tip me
over the edge, but using the time I had (lots of it) I became very creative in
the kitchen.
Within six
months we could all see that this diet and way of life was the way in which I
would fully recover. It has taken me until only a few months ago really to be
able to go out to a restaurant, for example, and eat a meal but even so the
choices are limited. To others I know my diet is still so restricting, but to
me I am now in foodie heaven enjoying the odd mango along with limited dairy
products and while I used to hate frozen peas I just can’t get enough of them
now. Gluten for me is still definitely a no go zone, but everything else I can
cope with most of the time in moderation. Hey, I even enjoyed frozen Christmas
pudding this year and felt great the next day.
I cannot say
how much this chemical free diet has helped me. I am now fully recovered from
CFS after a very long four years and am back to a healthy weight. I am married
and have started my own business called Floradiction - a wedding and event
floral and candle design business.
I will
always be restricted in what I eat but the positives far outweigh the negative
effects that occur should I stray too far from the ‘rules’. Moderation is now
the key. I know what works for me and that is important. My failsafe recipe
book is huge and I love adapting ‘normal’ recipes to suit my needs. I haven’t
had any complaints from my husband Glen yet so things are looking good. Funnily
enough when he has a meal that is out of the ordinary from what we eat at home
he always feels worse for it.
I have
experienced so much with my illness, but I am actually glad it happened to me.
So many good things have come into my life because of CFS my close
relationships are even closer and I have a greater appreciation for the simple
things in life and what it means to be able to get out of bed in the morning. I
can now use my experiences to help others who have CFS and help to promote a
very misunderstood and still poorly accepted illness. Raising the awareness of
Australians of the serious effects that food chemicals, both natural and
artificial, can have on the health of some individuals is also an issue close
to my heart.
All the
candles that I sell and decorate through my business are unscented. The reason
for this? People like me can’t tolerate the perfumes and it is important that
there are products available for others like myself. – Emma,
[260] CFS and failsafe (June 2003)
A bad case
of Glandular Fever triggered my CFS, which resulted in two miserable years of
bouncing from one medical practitioner to another trying western medicine and
other alternatives such as acupuncture. The responses were often unsympathetic
and showed a complete lack of understanding about the condition.
It was
through a recommendation from the CFS society in
The nature
of my work made it very difficult for me to effectively reintroduce all foods
so I am still unsure of all the chemicals that affect me. However, MSG is a
shocker!! as are most preservatives. When I start feeling the CFS symptoms
coming back I put myself back on failsafe.
Despite a
careful diet I still need more sleep than most people (9 - 10 hours a night) to
function effectively. I rarely drink alcohol, this makes the CFS symptoms worse
and I seem to be very sensitive to strong smells such as deodorant and perfume.
I definitely feel better when living outdoors.
Without a
doubt, going failsafe saved me from years of depression and frustration. I
never take my good health for granted after being so deprived of the lifestyle
I love. - Amanda, Melbourne
Your story:
if you would like to share your failsafe story with others, please write to confoodnet@ozemail.com.au
A recent
book of simple stories from those who have recovered from CFS, edited by Alex
Barton in the UK, is available: http://www.alexbarton.co.uk/cfsrecovery-stories.htm
and www.authorhouse.com/bookstore/ItemDetail.aspx?bookid=49650
www.fedupwithfoodadditives.info
The information given is not intended as
medical advice. Always consult with your doctor for underlying illness. Before
beginning dietary investigation, consult a dietician with an interest in food intolerance.
You can find a supportive dietitian through the Dietitians Association of
Australia www.daa.asn.au or write for our
list of supportive dietitians (confoodnet@ozemail.com.au)
© Sue Dengate Update June 2006
