Over the last few years it has become highly evident to the ME/CFS Society that dietitians are extensively involved in symptomatic management of the illness. 

We frequently have dietitians contacting the Society for more information about the illness.

We also frequently have inquiries from sufferers for referrals to dietitians who truly understand the illness and how to treat it. 

Based on these needs the group will assist dietitians in:

• understanding the physiologic nature of ME/CFS & its psychosocial consequences
• feeling more confident in appropriately and realistically treating the dietary needs of clients with ME/CFS, whilst also taking into consideration the barriers, both physiological & emotional, that clients face.

The group will also assist the Society in:

• enabling patient referral to dietitians who have a true understanding of the illness & dietary management of its symptoms
• creating awareness and interest, of and towards the illness, throughout the dietetics community

This latter point is particularly important as further research and resources are desperately required. We hope that you will feel inspired to at least keep up to date with research and products shown beneficial for treating patients with ME/CFS. We have a dietitians' closed e-mail discussion group which can facilitate this and allow you to keep in touch with each other and the ME/CFS world.

TOP

 

Wednesday, 5th of September, 9-11 am, Rm 7E-120A, FMC.

• Group leader & group member introduction, involving a "Get-to-know-you" exercise

 
• Discussion & documentation of group & personal goals

• Formulation of group norms & expectations. These assist in facilitating an open & friendly group environment.

 
• Tea break

• Description & discussion of content for sessions 1-6; click here for out-line

• Group activity

• Close

• pathophysiology
• presenting signs & symptoms
• psychosocial consequences for children, adolescents & adults.
• the diagnostic criteria debate -- CDC vs Oxford vs Ramsay definitions
• the name debate
• State of the Science (SOS) conference findings
• what you might expect from your first consultation with the patient and what the patient with ME/CFS will be expecting from you.

• common nutritional deficiencies
• problematic eating patterns resulting from self-diagnosis of food allergy
• symptoms which may respond to diet-related therapy -- including management of malabsorption, orthostatic intolerance, blood lipid profiles, cognitive dysfunction, hypoglycaemia, weight loss & gain, inflammatory and auto-immune responses.
• symptoms which act as a barrier to diet-related therapy

• Co-morbidities complicating dietary therapy -- will include discussion of Crohn's disease, Addison's disease, Sjogren's Syndrome, arthritis/ fibromyalgia, thyroid disease, hypo/ hyper-glycaemia, food allergies & intolerance's, multiple chemical sensitivities...
• Special nutrition-related disease risks -- will include a discussion of osteoporosis
• alternative dietary therapies
• Special considerations -- modification of dietary requirements requuired for specific medications, including long-term antibiotics for mycoplasma infections.
• The professional management care team -- the people whom you may need to work with.

• How the University of Newcastle testing can facilitate appropriate dietary management -- discussion of blood lipid, urine, faecal profiles.
• Work-shop using actual (anonymous) patient-profiles

• How to deal with MLM; raising patient awareness & knowledge of (work shop)
• Cognitive Behaviour Therapy & Graded Exercise regimes (patients will discuss their experiences & you will get an opportunity to ask questions)

• dietary changes that have been helpful and realistic to achieve, and
• dietary changes that are difficult to achieve, identifying barriers thereto

ME/ CFS is a condition for which there is no single known aetiology. Patients may experience a diverse array of symptoms which can fluctuate from month to month, week to week, day to day and even hourly. Most symptoms are exacerbated by both physical and mental activity, however this exacerbation may occur up to 24 hours post-exertion. 

Although fatigue is the most commonly cited symptom in popular press, sufferers will convey experiencing up to 30 odd debilitating symptoms, some of which are listed below. The fatigue is not purely subjective; muscular weakness and loss of tone, and cognitive impairment registered as a reduction in IQ, loss of short-term memory, dysnomia, dyscalcula, confusion and lack of concentration also occur. Sufferers perceive the term 'fatigue' as being a completely inadequate description of the extreme exhaustion that they experience; a good day for a severely ill person may be the ability to feed oneself. From experience, as a previous sufferer with a severe case, the exhaustion assumed from crawling to the toilet and back seems equivalent to running for a day with a nasty case of the flu in tow. 

Certainly, most ME/CFS groups advocate for disposal of 'CFS'; patients are more receptive and responsive towards a practitioner who uses the term ME (Myalgic Encephalomyelitis, or more recently Encephalomyopathies) as this is a sign of respect and true understanding of the severe nature of the illness.

There are several diagnostic criteria, based on inclusions or exclusions of particular symptoms, after ruling out other possible diseases and psychiatric causes. However, the use of the various criteria, particularly the Oxford criteria, is contentious. Details of these criteria have not been supplied as the debate is complex; most ME/CFS groups prefer a modified version of the CDC criteria, to ensure primary psychiatric exclusions. Working in South Australia, there are a few specialist GPs, and several highly regarded paediatricians who make the "official" diagnoses. These individuals are closely affiliated with the Society and one of them makes up part of the medical advisory board.

Several potential diagnostic markers are currently being investigated. These include a low molecular weight RNAseL specific to ME/CFS and more recently, SPECT scans demonstrating a unique reduced cerebral blood flow pattern in the brain-stem and thalamus regions.

The reduced blood flow to the limbic system, occipital and parietal lobes in the brain could account for various cognitive disturbances, and autonomic (including cardiovascular and GIT smooth muscle responses) and hypothalmic-pituarity-axis complications. Delineation of a causal effect is the next step in research for the Adelaide team (QEH & RAH). Patients with ME/CFS also have a higher viral loading (including stealth, chronic EBV, HHV6, cytomegalovirus) and are frequently diagnosed with severe mycoplasmal (alike Gulf War Syndrome sufferers) and rickettsia infections. Numerous significant endocrinological, biochemical and immunological abnormalities have been found; many are indicative of an upregulated and severe catabolic and inflammatory response. The list is too complex and long to explore here. Approximately 50-100 original studies are published on a quarterly basis.
 

[If you want to talk over specific points relevant to dietetics please have a chat with me some time... I also moderate a list of dietitians who work with ME/CFS patients & if you were interested it may be possible for me to subscribe you]

When other people wish you to comprehend what life is like for them, they will quite often exclaim, “If only you could walk in my shoes for the day!” When I first began to suffer severe symptoms of Chronic Fatigue Syndrome (CFS) I had wished beyond anything else that healthy others could indeed gain an intimate insight into what it was like to suffer from my illness. Reflecting on those difficult times, I now realize that the request to “Come lie in my bed for the day” seems more apt than to "Come walk in my (extensively untouched) shoes for the day”.

Fortunately, my bed and I are not such closely associated companions these days but my memories and I are still very much so. Every time that I lay my head to rest in bed at night, and prepare myself for eventual sleep, I am reminded of how grateful I am that I will again be rising from my place of sleep in the morning. This is a stark contrast to my past where I would spend my every morning, my every afternoon, my every night, (my eternity), bound to my bed by this devastating illness.

When I was much younger, my mother was presented with an ultimatum: if you immunize your daughter again, you will more than likely lose your daughter. I cannot of course remember this -- thankfully -- but I had just reacted severely to another course of immunizations. I was semi comatose for weeks, with a temperature far above that determinable by a standard medical thermometer. This seemed to be a sign of things to come …

By the time I was of school age (in the early 1980s) I was contracting every viral and bacterial infection that circulated the school and I experienced a much worse case than any of my friends. I almost always suffered from recurrent bouts of bronchitis and even pneumonia. Ultimately, I would miss up to six months of each school year, as result of the above complaints and a persisting flu/glandular fever-like illness. This illness left me incredibly listless. My poor body endured temperatures of 40 degrees C and above for weeks upon weeks.

At the end of these episodes, I would again have to learn to spell certain -- even very simple -- words. Determining which counter was mine in a Monopoly game was an extreme challenge that generally took the entire duration of the game (which is a long time, as those who play Monopoly will know!). Adding the dice and counting the money was an even greater challenge and more often than not an utter impossibility. I was constantly in a state of complete confusion with a kind of "brain fog" that numbed my mind and all of my senses and rendered my memory and all other cognitive functions useless. This “fog” showed very little sign of lifting regardless of whether I listened to my body and rested for extensive periods of time, or if I courageously pushed myself harder to attempt to concentrate on and accomplish simple tasks.

My muscles ached unbearably but were also so weak that I could not even grasp a remote control to change TV channels, nor could I hold a glass to my lips. I would have to shower sitting slumped in pain on a yellow plastic chair (not exactly aesthetically pleasing yet for its functionality alone it became one of my best friends). It was as if someone had sunk me deep into a batch of fresh concrete, which had quickly solidified around my limbs leaving them heavy and painful, and eventually numbed. This same concrete seemed to permeate my skin, circulate through my bloodstream and cross my blood-brain barrier to leave me completely functionless. I lay in bed in agony, so much agony that I was loath to move… so I existed (barely) as a pallid, concrete statue that occasionally omitted a few tears when energy levels permitted.

I suffered from severe, complex migraines and extreme light sensitivity. The migraines were so bad that I couldn't even move my little finger without thunderbolts of pain shooting through out my tortured body. On a few ocassions I became paralysed. It was terrifying but at the same time I'd had enough of the pain and remember hoping, at the tender age of eight years, that I would just hurry up and die. The first time the doctor saw me he thought that I had experienced a stroke and it was treated as an emergency; by the third time no-one blinked. So many devastating symptoms become common-place. My vision was badly affected - sometimes I just saw black nothingness, other times it was blurred and I was unable to focus on one place. I was either in so much pain, or such a severely confused state that I could very rarely watch TV, or read a book, or even open my eyes at all at most times.  Consequently, I spent most of my time alone in a darkened room, unable to sleep due to pain and insomnia, with my eyes closed ... and my door closed to the rest of the world. This was hardly by choice (despite others perceiving it to be that way).

Through out the years others, who were fortunate enough to have never suffered disabling, chronic health problems, certainly challenged my illness many a time. Most people were not willing to try “lying in my bed” for the sake of understanding me better. Perhaps they thought that I should just get up, change the sheets and wash the old ones to be rid of the case of hypochondria or lack of motivation that was supposedly being nurtured. If only, indeed, I was able to make my bed up all fresh and neat, and just get on with my life. Perhaps others were too scared of the truth, not wanting to know how dreadful CFS could be.  Regardless, since no one attempted to understand, I naturally lost many of my friends. I think it was as much their parents refusing to let them see me as them not actually wanting to visit me. It certainly did seem as if my friends’ parents thought I was harbouring a mental disease that might also become contagious to -- or be adopted by -- their children.

During my earlier years of high school, I became quite bitter about my own limited life-style and additionally extremely jealous of the life-style led by my friends. They would party for hours upon hours. They'd chain-smoke and abuse their bodies with various kinds of other drugs and behaviours (such as excessive dieting). These were all the activities that I wanted to be healthy enough to choose (adamantly) not to participate in. I certainly felt that a healthy body was implicitly too precious to harm, and could not understand the carelessness with which my friends treated theirs. A healthy body to me -- still to this day -- is the biggest asset that any one could possess. Sometimes I would become horrifically frustrated with others for taking their health for granted and certainly, I felt so mad that my friends could partake in all of the above mentioned activities and still not have to experience what it was like to lie in my bed. I distinctly remember thinking how damn unfair it all seemed. Sometimes I found myself despising my “friends”... and then I would feel guilty for doing so, think myself a bad person, and feel even more miserable.

There were years upon years of attempting to unravel the riddle of my health problems. Every specialist I visited was initially so convinced that they were going to be the super sleuth who could detect the cause of my problem. There were many clues that set me off in different directions but no concrete answers were ever obtained save that I had a unique condition, the cause of which would inevitably be found some 20 years later. That was not so pleasing considering that I wanted the elusive answers immediately. Moreover, once I had been placed in the too hard basket (as a shocking blow to the ego of academia and medicine) I was sent flying out the door with a condescending "don't come back now will you" fake smile.

I visited a heart specialist when a highly irregular and supposedly potentially fatal heartbeat was detected ... to no avail. I consulted an immunologist ... to no avail. I had brain scans, countless litres of my blood were drained (and seemingly wasted) on tests that constantly picked up differing and often rare abnormalities but were not conclusive for a particular illness. On and on it went. I would develop new symptoms and be rushed off for a CAT Scan or to a neurologist when my feet starting turning black ... etc. etc. etc. I remember thinking that I couldn't possibly bear to be subjected to another test and the inevitable disappointment that I would have to experience upon hearing that nothing useful had been determined. On reflection of my earlier years of the illness, I think I developed every symptom ever listed as diagnostic for CFS after other afflictions had been ruled out.

I was finally diagnosed with CFS by a specialist (incidentally my GP had suspected this illness all along) in 1994. At this time I was in year 12 at my second high school. I did find it relieving to have a name to put to my suffering. Unfortunately, though, it was really just a consolation prize as no-one seemed to have much of an idea as to what to do about it -- least of all me. What is more, the name did not strike me as sounding particularly creditable and certainly did not seem to be to be truly representative of all of my pain and suffering.

Up until the time that I was diagnosed with CFS, I was constantly in trouble with the teacher "law", as I was not able to do any homework at night time or during the weekends. I would require these times to recuperate from my schooling. Some times I would attempt to socialize on the weekends but I chose the wrong people to socialize with and I would end up returning to school the following week with all of my symptoms exacerbated. My preoccupation with socializing with my less than desirable friends continued until I was again rendered in a bed-ridden state. I would constantly cycle between being bed-ridden and recuperating to about 50% of normality. Certainly in my teens I could have done with the support of a CFS Youth Group as the company that I kept did not permit me to be any thing but supposedly full of vitality.

The real turning point in my life came in 1994 (after the "consolation" diagnosis). My school counsellor Mr David George became my Guardian Angel. He showed me that he believed in me by constantly encouraging me to keep persevering and providing me with much needed reassurance and assistance. He learnt about my illness and educated my teachers, and by doing so, he made my life so much less of a battle and more of a pleasure for the first time in years. He also helped me to rebuild my self-confidence and he was indeed wise to believe in me. I managed to accomplish three perfect scores and was additionally awarded with the Geological Society of Australia Prize for achieving the highest exam and overall mark in PES Geology. I had not expected to do so well as I was still struggling with my health and was experiencing other problems (unrelated to my health) at that time.

I have since completed a Bachelor of Science and am now undertaking a Masters degree. It has taken a lot of courage to cope as best as possible with my illness but even more so to cope with those who so vehemently dismissed the fact that there was any thing wrong with me. Many people have labelled me with all the countless stereotypes that are frequently (and definitely) misplaced on students with CFS. I have been described as “lazy”, “scared of the outside world”, “unmotivated”, “stupid” and a  “hypochondriac” amongst other awful things … but I was only rarely correctly labelled as “chronically sick”. I have been misunderstood countless times, and it pains me to see teenagers today experiencing the same disbelief and tragically hurtful treatment that I endured during my teenage years.

Of course, I again experienced all the normal stereotypes commonly applied to students with CFS when I attended University. By this stage though, I was strong enough and wise enough to at least ignore the comments, even if I didn't always have the capacity (knowledge, time or health) to stand up for myself. What's more, finally in my early twenties I learnt to accept my limitations (and break off friendships with others who couldn't do the same for me). I learnt to not feel ashamed of my illness past and realised that it had been an incredible source of personal growth.

I now only have very mild CFS symptoms. Regulation will always be the law of my life -- both academically and socially. This was initially disconcerting but an absolute necessity for both my physical and psychological well being. The concept of pacing oneself is certainly difficult to grasp for someone who feels an awful lot of drive to achieve in areas that they know they are more than competent.

This year I bought a new bed but I will always remember the old one. No matter how much more extensively my health improves over the years I will always attempt to help others who are suffering from CFS. One of the most rewarding experiences for me has been my volunteer work with SAYME (South Australian Youth with Myalgic Encephalomyelitis) and the ME/ CFS Society of SA, which I have now been undertaking for approximately the past two years. I edit and write articles for their journal Talking Point, assist in organising conferences and seminars, advise on scientific matters, moderate support group e-mail lists, help out with running face-to-face support groups, and participate in a national ME-leaders e-mail list.  I have previously acted as the Tertiary Student Co-ordinator, providing students with information regarding accessing available disability support services for their studies, providing them with moral support and inspiration, and  teaching them about  their rights and the Disability Discrimination Act sections applicable to Tertiary Institutions and their staff. In the process of this work,  I have been learning many more lessons from members of the Society than I could have ever expected, and sometimes I find myself feeling so much pain for them as I remember so vividly those younger, darker years. 

In terms of my future, I am looking forward to having a satisfying but not all-consuming job (hopefully as a Dietitian working with the University of Newcastle, in keeping with my present study for a Masters in Nutrition and Dietetics). I hope to marry a wonderful guy who treasures me but does not obsess over me, and then give birth to a very close family who will stick together through thick and thin. 

I am constantly looking forward to the day when there will be true acceptance of CFS as an illness. I do not know when this will be. I do however believe that by sharing our experiences and circulating our stories further than just amongst sufferers we may just encourage healthy others to understand our illness a little better. Surely, this has to be a step forward towards true understanding and genuine knowledge for all.