This lecture will be of interest to patients with CFS/ME and other fatiguing illnesses, their families and the general public.

Sunday, November 9th, 2008
1:30 - 4:30 pm
Libin Lecture Theatre, University of Calgary
Price: $30.00/person or $15.00/low-income person
Libin Lecture Theatre is wheel chair accessible.

• Dr. Nancy Klimas, President of the International Association for Chronic Fatigue Sydrome/Myalgic Encephalomyelitis (IACFS/ME), co-author of the Canadian Consensus Guidelines for the Diagnosis and Treatment of ME/CFS, and faculty at the University of Miami School of Medicine will present a world wide research update on CFS/ME.

• Dr. Alison Bested MD FRCPC is a Hematological Pathologist who has a specialty practice dedicated to CFS/ME, FM and MCS for the past 17 years. She is the author of Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia, a co-author of the 2003 ME/CFS Clinical Working Case Definition, Diagnostic and Treatment Protocols, and Acting Medical Director of the Environmental Health Clinic at Women’s College Hospital in Toronto, Ontario.

No Scent Makes Good Sense
*Participants with allergies and sensitivities thank you for not wearing ANY scented personal care products such as aftershave, cologne, perfume, hand cream or hairspray.*

For registration form, please go to www.cme.ucalgary.ca//shortcourses

Registration infomation

Both Part I and Part II Lectures are for Family Physicians, General Internists, Rheumatologists, and Psychiatrists.

Friday, October 24th, 2008 - 1:00 - 4:45 pm - Dr. Clara Christie Theatre, Calgary, AB

After attending, participants will be able to:

• Use the Canadian Consensus Guidelines and check lists to accurately diagnose patients presenting with the signs & symptoms of CFS/ME

• Use the Guidelines’ history, physical examination and laboratory tests to exclude other diseases that can cause chronic fatigue, sleep disorders, pain and cognitive difficulties

• Assess occupational disability in CFS/ME

• Differentiate CFS/ME from psychiatric disorders

Dr. Pierre Flor Henry MD FRCP(C) Clinical Professor and Director, Clinical Diagnostics and Research Centre, Department of Psychiatry, University of Alberta, Co-Author: Canadian Consensus Guidelines for the Diagnosis and Treatment of ME/CFS

Dr. Eleanor Stein MD FRCP(C)
Psychiatrist with dedicated CFS practice, Calgary, Alberta

Dr. Irena Esche MD FRCP(C)
Psychiatrist in private practice, Calgary, Alberta

Part II: Clinical Management of CFS/ME Clinical Management of CFS/ME

Friday, November 7th, 2008 - 1:00 - 4:45 pm - Libin Lecture Theatre, Calgary, AB

Through case examples and discussion, participants will learn:

• The treatment approach to CFS/ME

• Management of sleep, activities, pacing, pain and diet

• To take an environmental history to evaluate the impact of environmental/dietary influences on health

• To teach the basics of stress management learning the tools of meditation and breathing regulation

• To assist patients with the emotional effects of chronic illness: CFS/ME

Dr. Alison Bested MD FRCP(C) (Hematological Pathology)
Author: Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia,
Co-Author: Canadian Consensus Guidelines for the Diagnosis and Treatment of ME/CFS

Dr. Eleanor Stein MD FRCP(C)
Psychiatrist with dedicated CFS practice, Calgary, Alberta

Dr. Ernie McCrank MD FRCP(C)
Psychiatrist in private practice, Calgary, Alberta

For registration form, please go to www.cme.ucalgary.ca//shortcourses

Registration infomation

These Lectures are for Researchers and clinicians of all disciplines who work with patients/clients with disabling fatigue in chronic disease. This includes autoimmune disorders, chronic infection, chronic liver disease, pulmonary and heart disease, chronic fatigue syndrome, overtraining and stress syndromes and fatigue of unknown causes.

Saturday, November 8th, 2008
9:00 am - 4:30 pm
Libin Lecture Theatre, University of Calgary

Format:

The morning will consist of short oral presentations by invited speakers to summarize areas of study and emerging questions. The afternoon will include oral and poster presentations from among those submitted followed by facilitated small groups to enable networking and knowledge development. The day will end with a large group discussion of directions for further study of disabling fatigue.

Objectives:

• To facilitate interdisciplinary discussion about disabling fatigue.
• To develop research questions about disabling fatigue. For example how does fatigue vary among various medical conditions? What is the etiology of disabling fatigue? How can disabling fatigue be evaluated? How can disabling fatigue be optimally managed?
• To further the development of an Alberta wide collaboration among fatigue clinicians and researchers with the goal of funded research to answer some of the above questions.

For Registration and Call for Abstracts - see www.cme.ucalgary.ca

Keynote addresses:

• Dr. Nancy Klimas MD (Immunology, Department of Medicine, University of Miami School of Medicine and VA Medical Centre, Miami, Florida) - Researcher in immunology of HIV and CFS/ME, President of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), Co-Author: Canadian Consensus Guidelines for the Diagnosis and Treatment of ME/CFS - “Biologic mediators of Fatigue”

• Dr. Alison Bested MD (Hematological Pathology, Toronto, Ontario) - Clinical practice dedicated to patients with disabling fatigue, Acting medical director of the Environmental Health Clinic at Women’s College Hospital Toronto, Co-Author: Canadian Consensus Guidelines for the Diagnosis and Treatment of ME/CFS
- “What are the important clinical questions in disabling fatigue research?”

Confirmed Speakers:

• Dr. Carey Johnson MD (Medical Genetics, Calgary) - “Disabling Fatigue in Ehrlers Danlos Syndrome”

• Dr. Bryan Kolb PhD (Chair, Canadian Centre for Behavioural Neuroscience, U of L) - “Brain Plasticity and Fatigue”

• Dr. Brian MacIntosh PhD (Kinesiology, U of C) - “Central and peripheral mechanisms of muscle fatigue”

• Dr. Karin Olson PhD (Nursing, U of A) - “A new paradigm for understanding fatigue”

• Dr. Steve Simpson MD FRCP(C) (Psychiatry, U of C) - “Managing fatigue in cancer survivors”

• Dr. Neil Skjodt MD (Sleep Medicine, U of A) - “Sleep assessment and disorders in chronic fatigue”

• Dr. Mark van Ness PhD, Staci Stevens MA (Sport Sciences, University of the Pacific, Stockton, California)
- “Using cardiopulmonary exercise testing to determine metabolic function and disability”

For registration form, please go to www.cme.ucalgary.ca//shortcourses

Registration Information

Listen ,you are not alone

I am of them.

The positive thing about this illness is…

I rediscovered one of my interest

The joy of writing poem.

You don’t have to be ashamed

No one is to blame

It just happened suddenly

It felt your life is taken away.

At first ,they thought I have MS

I went trough a lot of test

It ended up everything was perfect.

My mind is willing to do all sort of things

Unfortunately, my body is often too tired to accomplish a simple thing.

Not knowing what to expect can make you feel insecure

But you are not  dying, you still  have a future

Doctors doesn’t really have a magical solution

It makes you feel lonely

Also, you are not always understood by people you love dearly.

You may have a lot of mixed feelings

But you can be part of your own healing

You’ve got within you 

The strengths  to empower you.

You have to collect all sort of observations

So you can figure out what are the connections

And make wise decisions to improve your situation.

Listen to your body and follow your intuition

It will lead you  in the right direction

Give you time to get to know you again

Life is not as his end.

Learn not to plan too much ahead

Live each moment instead.

You need to accept that you are not anymore that wild flower

Who can resist any  kind of weather.

You are fragile  and need special care

In order to fix what needs to be repaired

You still can bloom again and show your pretty colors

Let it go so you can grow!

You may not be ready for hiking but…

Like any human being

You still have some dreams.

Imagine what you desire

Burn the rest into the fire.

Do not give up on life!

It is easier to see what this illness took away from you

Just stay focus on the things you still can do and like

Your future will look so bright 

One day ,you will see again that sunlight

And say: “It’s worth the fight.!”

Nancy Fiset

by Doris Fleck

     As I drove out of Vancouver on a warm sunny day in mid-February, I felt so unwell that I considered turning around and going straight back to bed. It was the third time in six weeks I had come down with flu-like symptoms, but this time they seemed more intense.

     At 25 years of age, I was extremely busy juggling university classes, two part-time jobs and church involvement. There weren’t enough hours in the day for me and I certainly had no time for illness.

     But sudden fatigue, dizziness and blurred vision had hit me with a vengeance, and now I also felt a burning sensation at the base of my neck.

     As I drove past the Vancouver General Hospital, the thought floated through my mind that I should check in at the emergency ward, but I dismissed this notion as foolish. My parents lived in Abbotsford, a mere hour away. A good night’s sleep and some old-fashioned care would make me feel better in no time.

     But the longer I drove, the more severe the symptoms became. The burning sensation climbed up the back of my neck and my chin began to feel numb.

     As I approached the Port Mann Bridge, a tingling sensation enveloped my head. Suddenly I became very dizzy and felt faint. I panicked! What if I passed out while I was driving over the bridge? I had heard of cars crashing over the cement barrier and catapulting into the Fraser River.

     My heart was racing and I began to gasp for air. The tingling rapidly changed into a progressive numbness that cascaded over my neck and down my upper body. I could see my arms, but they felt like cotton balls. I thought I was having a stroke. My panic escalated and I began praying out loud, begging God to spare my life.

     Thankfully, I was over the bridge in a minute. Relieved, I drove to the look-out station on the other side. I intended to rest for awhile and then continue on, but the numbness had already spread to my legs. I was so frightened I called an ambulance and was rushed to the nearest hospital in Surrey.

     Thus began six years of confusion, questions, emergency room visits and medical testing. My symptoms confounded over 40 doctors and specialists until I was finally diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (CFS) as it is referred to today.

     When I became sick in 1986, few physicians knew anything about CFS. Many thought I was clinically depressed or concluded my bizarre assortment of symptoms were emotionally induced. On the advice of a doctor, I went to see a psychiatrist that came highly recommended. After three visits she told me my troubles were medical and advised me to seek medical help. When I produced a long list of the specialists I had already seen she merely shrugged her shoulders.

     If I had understood the disease at the time, I would have realized I was a “textbook” CFS patient. According to clinical researcher and medical doctor, Michael Rosenbaum, over 70 per cent of people afflicted with CFS in America are Caucasian women who are well-educated, affluent and in their early 20s to mid-40s. Most people, like myself, report a sudden onset of the disease with symptoms that generally come and go. Although many see a measure of recovery and some regain complete health, others are severely disabled for a period of years. For a few, the disease never goes away.

     I went from being a very active, energetic, enthusiastic person to bedridden in days. My symptoms continued in a cyclical pattern from severe disability to various stages of remission over the next nine years.

     The fatigue that plagued me was something I had never experienced before. I wasn’t just tired; I felt like I had 20-pound weights attached to my arms and legs. This was combined with a litany of other symptoms that included muscle pain, heart palpitations, night sweats, cold hands and feet, numbness, sensitivity to light and sound, intense pressure in my head, inability to concentrate, insomnia and nausea.

     I became terrified of what was happening to me. This panic sent my heart rate skyrocketing and induced heart palpitations and arrhythmia. These “panic attacks” precipitated numerous trips to the emergency room.

      I had to drop out of university and spent the next year and a half, using what energy I had, searching for solutions.

     While the multiplicity of symptoms I suddenly experienced are now commonly used to define CFS, they also fit a number of other diseases.

     Since no quick diagnostic tool is available, most CFS sufferers have to undergo a plethora of medical tests to rule out other diseases and I was no exception. I gave hundreds of blood samples and litres of urine as I was tested for lupus, rheumatoid arthritis, diabetes, thyroid disease, cardiac problems, cancer and a host of other ailments. I underwent a CT-scan to rule out multiple sclerosis and the possibility of a brain tumor. I endured three separate six-hour glucose tolerance tests to check for diabetes and hypoglycemia. The doctors reviewing these tests said I had reactive hypoglycemia, but agreed it should not be this debilitating.

     One doctor encouraged me to “get on with your life.” I asked him how that was possible when simple tasks, like sitting up for 10 minutes at a time, completely exhausted me, but he couldn’t provide any answers.

     In their excellent book, Chronic Fatigue Syndrome: A Treatment Guide, authors Erica Verrillo and Lauren Gennman explain that this is, “one of the most complex, multifaceted, baffling illnesses the medical world has encountered.”

     Thus far no one has been able to identify the cause of CFS, find a cure or even come up with a good case definition.

     According to Verrillo and Gennman, “It is hard to describe and even harder to diagnose because its symptoms can range from allergies to vertigo and can occur in every imaginable combination. Most confusing, however, is the range in severity of CFS, from mere inconvenience to utterly disabling disease.”

     For myself, necessary functions became almost insurmountable. Walking a few feet to the bathroom was so exhausting, I felt like I was trying to conquer Everest. I began measuring every action in terms of the energy it consumed and how much recovery time I would need afterwards. Over the next nine years fully half of my days were spent lying in bed, trying to gather strength for eating, talking and bathing. It was a living nightmare.

     In the early 1990s, Rosenbaum estimated 90 million people world-wide were afflicted with CFS. Like AIDS, CFS is recognized as an acquired immunodeficiency disorder. Unlike AIDS, it isn’t deadly, but produces a paralytic fatigue that makes many CFS sufferers wish they were dead. The suicide rate among people with CFS is high because of this.

     The first recorded “epidemic” of a CFS-like illness occurred in 1934 in Los Angeles and affected close to 200 health workers. This outbreak followed on the heels of a poliomyelitis epidemic and was initially, incorrectly diagnosed as polio. To this day, similarities between these two diseases have researchers searching to discover a mutated viral form of polio which could be the root cause of CFS.

     With no known cause and little understanding of the mechanism of this confounding disease, treatment options have been scarce. Although doctors have now given credibility to CFS and are capable of making a relatively quick diagnosis (three months to a year), their inability to effectively treat the disease has caused multitudes to turn to alternative health care.

     Rosenbaum concludes that the results of this have been very beneficial. Many people with CFS have been found to be plagued by parasites and on-going candidiasis, a form of yeast infection, as well as suffering from hypoglycemia. Appropriate treatment for these problems has resulted in numerous sufferers achieving improvement. Though not a cure, some people are able to return to a semblance of normal living.

     Personally, I found a good naturopath and allergist within the first 18 months. Sticking to a strict diet, fighting off the candida and making use of massage therapy helped me immensely. An excellent family doctor encouraged the use of B-12 injections, which have proven very beneficial. A combination of prescription drugs to help me sleep and natural remedies along with on-going prayer have helped keep me free of major relapses for the last twelve years.

     In Canada, Dr. Byron Hyde began studying CFS in 1984. He organized and founded The Nightingale Research Foundation in Ottawa. With his help there have been world symposiums on this disease and the production of a clinical textbook to offer technical assistance to physicians.

     Recently Dr. De Meirleir, who works in Brussels, developed a diagnostic test that shows evidence of CFS. The test gauges the amount of an immune enzyme that protects the body against viruses. Those with chronic fatigue syndrome have an abnormal form of the enzyme that is more active, yet less effective than the healthy form of the agent.

   In late 2006, the test became available in America for the first time, when RED LABS opened operations in Reno, Nevada. While the cost of $570 US test is covered by insurance in the United States, it is not covered in Canada.

     Even though I was totally bedridden at one time and wished I were dead, I am now very thankful to be alive. Although I could have a relapse at any time, each day when I awake with energy to work and enjoy life I am grateful. Without the support of an amazing husband, caring family, compassionate friends, and a church group that supplied meals and prayer, I don’t know if I would be alive today.

     For more information on CFS, The Nightingale Research Foundation can be contacted on the web at www.nightingale.ca. Two excellent resource books with solid advice on treatment are; Solving the Puzzle of Chronic Fatigue Syndrome by Dr. Michael Rosenbaum & Dr. Murray Susser and Chronic Fatigue Syndrome: Treatment Guide by Erica Verrillo & Lauren Gellman.

     If you would like to contact me directly, you can do so by e-mailing me at doris@calgarychristian.com.

May 12th was chosen in memory of Florence Nightingale’s birthday which was May 12th, 1820. After returning from the Crimean War ill with what was thought to be ME/CFS like symptoms, she was bedridden for almost ten years. She still managed to continue her work through writing over 200 books and articles and wrote the first book ever used in the education of nurses. Florence was a leader in advocating for the reduction of sickness and poverty.

The National ME/FM Action network successfully lobbied the Federal Government to proclaim May 12th as National Awareness day for ME/CFS & FMS

• 1994 – First request to Health Minister to proclaim May 12 as “National Awareness Day” for ME/CFS
• 1994- 1st ME/CFS Awareness Day celebrated with a March on Parliament Hill
• 1995- Request that both ME/CFS & FM be recognized on May 12th
• May12 1996 – Parliament declared May 12th National Awareness Day for both ME/CFS & FM & it continues to this day.

• Dr. Richard McCallum*, gastroenterologist, Chief of Gastroenterology, Hepatology and GI motility from the University of Kansas Medical Center
• Dr. Edmon Soffer*, gastroenterologist and assistant director of the GI motility lab at cedar Sinai Medical Center in Los Angelos.CA
• Carol Rees-Parrish, RD, MS a renown expert into dietary interventions for the treatment of digestive motor(motility)problems, nutritional interventions post-surgical gastrointestinal complications, diets of chronic liver and kidney diseases.
• Dr. Christopher Andrews, GI motility specialist, University of Calgary
• Keith Sharley, PHD, basis researcher at the University of Calgary
• Martin Mintchev, PHD, department of engineering, University of Calgary and basis researcher into newer generation of implantable devices for the treatment of gastroparesis, and colonic inertia.