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 Sydney - has helped them enormously, see below. It is not a cure. Possibly the most important single component for that is Rest, Rest and More Rest - hard to do in today's busy lifestyle, but vitally important. The diet can significantly reduce symptoms of tiredness, depression, headaches, muscle aches and other symptoms such as stomach problems and perhaps lead to a quicker recovery. Some people find they don't have CFS and their symptoms have been largely diet-related. The bread preservative (282) is most commonly implicated in these cases, but other food chemicals both artificial and natural can contribute as well.

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

[1025] Chronic fatigue, endometriosis and diet (May 2011)

I have had Chronic fatigue symptoms for 6 years and seen heaps of Doctors. I have tried an elimination diet and a vega allergy test diet through a doctor and not found much relief. I started failsafe eating as soon as I read your book last year and found it made me feel much better, but I still felt very lethargic and felt something was wrong. I had been on the merry-go-round of Doctors for almost 7 years and finally they found late last year that I had a severe case of endometriosis. Immediately after the surgery I felt so much better! It was like a miracle. I was very angry because my symptoms had actually started 18 years prior and no one had picked it up!

I think my body had been struggling with it for so long, it was just packing it in. I really believe the diet gave my immune system the break it needed and probably kept me alive and going last year. I at least had the energy to keep annoying the Doctors, who had told me it was all in my head for years. While sick, on the diet, I basically could only stay on the lowest food chemicals. After surgery I gradually tested amines, salicylates and MSG and found I suddenly had no reaction to them like before. I believe this indicates that a stressed immune system doesn't cope with food chemical and additive overload. I have still to test additives/colours, but have just found it easier and healthier to avoid them. Thanks so much for your help, books and yummy recipes. I’m so glad you have started this journey and hope you can keep making a big change to what goes into our food. – by email, Qld (See more on our Womens Health factsheet)

[1024] 319, 320: Antioxidants and chronic fatigue (May 2011)

In 1995 I gradually developed CFS and was invalided out of work a year later. In late 1999 I began the RPAH elimination diet. Ten days later my brain fog and fatigue were greatly diminished. Challenges confirmed intolerance to dairy and gluten – which I had eliminated years previously – and indicated intolerances to salicylates, amines and glutamates.

In the following years I had a few relapses, usually lasting for no longer than a couple of weeks. The exception was a six months relapse, which ceased five days after I decreased my intake of vegetable oil and changed from canola to sunflower. (Both oils had no additives listed on the label)

In January 2007 I was feeling quite well and had no significant CFS relapse for a couple of years. At the beginning of February my energy plummeted. I needed to spend at least twelve hours a day lying down, instead of eight hours. Physical fatigue and brain fog returned in force. Six weeks later I bounced back, and was quite well for a few weeks, then I plummeted again. These irregular fluctuations continued throughout the year, but the highs got lower and the lows got lower. I became much more sensitive to amines.

In early February 2008 I went to Woolworths for grocery shopping. I picked up a bottle of sunflower oil and glanced automatically at the contents. In a way, I was not really looking because I ‘knew’ that nobody put additives into sunflower oil in Australia. But there it was: ‘Sunflower Oil, Antioxidants E319, E320’. I squeezed my eyes tight, reopened them, and read the same thing. Then I grinned and imagined myself leaping into the air and clicking my heels. Yes!

I phoned Woolworths and was told that their sunflower oil had E319 and E320 since the beginning of 2007. But sometimes my wife bought sunflower oil from Coles. No, Coles had never put antioxidants into their sunflower oil. We take about six weeks to consume a one litre bottle of sunflower oil. I looked back in my diary and found that the length of my ups and downs were in multiples of six weeks. We swapped to Coles sunflower oil. Eighteen days later I was fully well again. – Ian, by email

[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 Royal Prince Alfred Hospital.

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, Sydney

[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 Sydney, and we found what was to be the turning point in my battle with CFS. I was extremely sensitive to chemicals both natural and artificial in foods and perfumed products.

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, Sydney.

[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 Melbourne that I saw a failsafe allergist. It took nearly three months on a very strict elimination diet before I felt my old self again and the glands in my neck no longer felt like golf balls. It wasn't long after the three months that I was back working in the outdoors [with an extremely high-energy job]. With hindsight the recovery was remarkable after spending so long with little to no energy.

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