At the beginning of a new millennium I would like to wish you and your family a happy, positive and increasingly healthy period ahead in 2000 and beyond. I wish to introduce myself and my consultancy service for Chronic Fatigue Syndrome (CFS) in collaboration with the Collaborative Pain Research Unit of the University of Newcastle.
I am always learning more about this complex and debilitating condition but I have extensive first hand experience of the devastation and isolation this disease can inflict on one’s daily life. I am equally concerned about the effect community misconception and disbelief can wreak upon one’s self esteem and existence, including family and friends. I have had CFS for the last 16 years in varying degrees of severity. Thankfully I have improved dramatically such that I can work again and be helping others with this condition. But, yes, I have experienced the desolation of spending large periods of time almost bed-bound – dreadfully incapacitated, dependent on a disability support pension and wondering whether this is what life is about. I would like to reassure you that there ARE symptom treatments you can investigate to improve your life for the better. There are also lifestyle changes that can help maximise your energy and recovery. Please remember that although CFS is proving to be a complex heterogeneous disease with many different sub-types, there are many “treatments” that are not helpful, are unscientific and not recommended. Always consult a registered health practitioner specialising in CFS management.
I’m sure many of you have, and still do, experience the frustration and humiliation of being labelled as neurotic, or being told our illness is psychosomatic (“all in your head”) by the more unenlightened and out of date members of the health professions trying to “help” us. Or perhaps you have been treated by an understanding practitioner who believes you are unwell but has no idea of the range of symptoms CFS produces, leaving you to spend your valuable and limited energy explaining and convincing them of the wide effects on your body. Because, like you, I have experienced all these bizarre symptoms, the freakish way they wax and wane and absolutely know what they feel like, you won’t spend any valuable energy convincing me what you experience is very real. As your consulting dietitian, I therefore have an advantage over most other practitioners, spending time efficiently looking for ways to treat your symptoms and improve your quality of life.
When managing a chronic illness the best results are achieved with a multi-disciplinary approach to patient care. This means qualified practitioners collaborating together on the medical, nutritional and social aspects of your disease. This approach achieves the best outcome because you are assessed in total, as whole person or wholistically. You will know from your own experience that often only particular symptoms or body organs are targeted depending on the practitioners specialty, but you need to put all the advice together to achieve better health. I am clinically qualified as a medical nutrition specialist to treat patients with diseases that have a nutritional cause or component which complements the medical advice given. I trained in Flinders University’s School of Medicine to Master’s degree level.
It is obvious a dietitian’s role is much more involved than maximising nutrient intake for sick patients. More and more research is highlighting the role clinical nutrition is playing in CFS. Recent studies show our chronic illness leaves us in a undernourished and protein deficient state; others highlight the importance of symptom exacerbation by food hypersensitivity reactions and yet others are exploring treatment protocols based on dietary supplements like amino acids, vitamins and minerals. The gastrointestinal symptoms frequently seen in CFS patients are a major research interest. To receive the best management for these nutritional aspects you need to consult both nutritional and medical opinion.
The importance of dietary management for symptom control is highlighted in the recent results from the ME/CFS Society of South Australia’s 1998 survey of members which included a question about the effectiveness of a range of treatments. Sixty-six percent (66%) of the 200 respondents indicated their CFS symptoms had improved as a result of dietary management, while less than a third (31%) felt no change in their condition and only 3% felt their symptoms had worsened due to dietary changes.
This past year I have taken an active research role in trying to understand our illness by commencing a PhD, or Doctoral Degree, with the University of Newcastle’s Collaborative Pain Research Unit investigating dietary influences on gut dysfunction and overall symptoms. I have been working in collaboration with the research team for the past two and a half years on their CFS investigations. Many of you are familiar with the Newcastle research showing metabolic abnormalities in urine and blood profiles and alterations of the faecal microbial flora. This is very exciting for me, and I hope for all of us, as I will be actively researching with the team which means I will be able to pass new information onto my patients more quickly. We will conduct several clinical trials as part of my study and I will encourage my patients to participate in these where possible.
My areas of specialty in CFS management are in food intolerance and allergy, gut dysfunction and treatment protocols based on the metabolic profiles indicated in the University of Newcastle urine, faecal and blood tests. These are the first and only medical tests which consistently indicate abnormalities in body functions. Dietetic consultations on these metabolic profiles and food sensitivities are available face to face, or for those at distance or too unwell to travel by car, by telephone utilising evening STD rates, which is probably cheaper than driving to the surgery in most cases! Dietary information, treatment protocols and receipts are posted directly to you and are included in the consultation fee. I have been conducting this CFS consultation service Australia-wide and in New Zealand over the past two-and-a-half years and am pleased to report that it is working well.
To book a telephone consultation, call me directly on (02) 4965 6662 on Monday or Wednesday evenings ONLY between 6:00 and 7:00pm, New South Wales time (half an hour in front of Adelaide). If I am unable to talk with you during these times please leave your name and contact number on the answering service and I will return your call as soon as possible. Appointments at the Morpeth ((02) 4933 6311) or Cooranbong Medical Centres ((02) 4977 1702) can be made by telephoning the surgery directly.
Through experience I have structured the first consultation to be longer so it gives us time to talk freely and gain a complete history of your illness, symptoms and previous investigations and treatments, in addition to what your current status is. This thorough history has proven time and again to be very valuable in giving clues to appropriate treatment options based on a wholistic appraisal. In addition, the longer consult provides sufficient time to discuss and decide on the initial management option and gives you a positive goal to work towards in your quest to improve your health. I also find that structuring consults this way necessitates only a half hour follow up at a minimum of four to five weeks. This works out much less expensive for you than a series of shorter appointments to glean the same information and enables me to make management decisions based on all facets of your current situation.
I look forward to consulting with you and together aiming for positive progress to improve your quality of life and enable you to enjoy a more active role again. If you haven’t experienced any improvements in managing your symptoms, can I extend to you the encouragement to keep trying and explore the nutritional aspects and new treatment protocols for our illness, and reassure you that many dedicated people are working tirelessly for a treatment that will restore health and prosperity to us all.
With all good wishes,
Tania Emms
January, 2000
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Copyright © Tania Emms (bitme@cc.newcastle.edu.au). This article is not to be reproduced without permission.
Reprinted from http://www.sacfs.asn.au/