The Myalgic Encephalomyelitis / Fibromyalgia Society of Alberta

Discovery of Significant link between XMRV and ME/CFS.

admin — Thu, 15 Oct 2009 14:34:26 +0000

Whittemore Peterson Institute Scientists Discover Significant link between XMRV and ME/CFS RENO, NV - A recently identified retrovirus called XMRV has been linked to a debilitating neuroimmune disease that affects more than one million people in the United States. Scientists from the Whittemore Peterson Institute (WPI), located at the University of Nevada, Reno, and their collaborators from the National Cancer Institute and the Cleveland Clinic, have discovered a retroviral link to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). They recently published their groundbreaking findings in the journal, Science, one of the world’s leading journals of original scientific research, global news and commentary. The paper, entitled “Detection of Infectious Retrovirus, XMRV, in the Blood Cells of CFS Patients,” is a major breakthrough in understanding the origins of this disease. “Since the original Science paper was submitted, we have continued to refine our test for XMRV and have surprisingly found that 95 percent ME/CFS samples tested positive for XMRV antibodies in the plasma. This finding clearly points to the retrovirus as a significant contributing factor in this illness,” said Judy Mikovits, Ph.D., director of research for WPI and leader of the team that discovered this association.

This landmark study was the first to isolate XMRV particles from the blood, and show that it can be transmitted between blood cells. XMRV was originally discovered in prostate cancer tissue of men with a specific genetic immune system defect by Dr. Robert H. Silverman of the Cleveland Clinic. A similar immune system defect in patients with ME/CFS led researchers to look for the virus in banked blood samples donated from several medical practices throughout the United States. Other retroviruses, such as HIV and HTLV-1, are known to cause cancer and immune deficiencies in humans. This study showed XMRV can be found in human blood cells and is infectious. Researchers have confirmed that this retrovirus is transmitted through body fluids and is not airborne. WPI researchers have continued their in-depth studies of XMRV to clarify its effects on the human immune system. Scientists at WPI are clinically validating a blood test for the detection of XMRV in ME/CFS and other human diseases. X associated neuro-immune disease, or XAND, a new disease entity encompassing ME/CFS, will require additional research funding to find effective treatments for patients. With anticipated funding, WPI will begin the work of determining if any currently approved drugs can suppress XMRV, followed closely by human clinical trials to advance the most effective patient treatments.

“This is the breakthrough that we have been hoping for. Now we have scientific proof that this infectious agent is a significant factor in ME/CFS,” said Annette Whittemore, founder and president of WPI and mother of a ME/CFS patient. “Patients and their doctors will soon have a blood test to verify their diagnosis and provide the answers that they’ve been seeking.” Daniel Peterson, M.D., medical director of WPI added, “Patients with ME/CFS (XAND) deal with a myriad of health issues as their quality of life declines. I’m excited about the possibility of providing patients who are positive for XMRV a definitive diagnosis, and hopefully very soon, a range of effective treatments options.”

Information relating to XMRV associated neuroimmune disease can be found at www.wpinstitute.org. Those with XAND (ME/CFS) and/or fibromyalgia, interested in participating in research studies to further the development of diagnostic tests, should complete the questionnaire available at www.wpinstitute.org.

The Center for Molecular Medicine, now under construction, at the University of Nevada School of Medicine in Reno, is the future home of the Whittemore Peterson Institute. “We’re excited about the opening of our new facility next summer, which will not only add thousands of square feet to our existing laboratory space, but will also provide new space for comprehensive patient care,” added Whittemore.

Whittemore Peterson Institute The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often results in lifelong disease and disability. The WPI is the first institute in the world dedicated to X associated neuro-immune disease (XAND), and other X associated diseases, integrating patient treatment, basic and clinical research and medical education.

Lydia E. Neilson, M.S.M.
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667 Fax (613) 829-8518
E-mail: ag922@ncf.ca
Web: http://www.mefmaction.net

AN AFTERNOON OF JOYFUL NOISE, FELLOWSHIP AND INFORMATION

admin — Sun, 13 Sep 2009 22:09:57 +0000

Book Your Calendar Now for Saturday October 24th
1:00 – 4:00 pm at Christ Church 3602 8th St SW

Pamela L. Alexander, BA, HHP, Holistic Practitioner, FUN shop & Naked Voice Facilitator will lead us for an afternoon of chants (accompanied by percussion) from various traditions. It can be a very powerful experience to be a part of a group creating and sharing sound. It can dissolve tension, nourish our bodies, and awaken compassion and joy.

Come and meet other people with ME/CFS/FM/MCS and to enjoy time with your friends and families. All ages are welcome. Please bring your own percussion instruments if you have them. If you are struggling with low energy that day, please feel free to bring a moat or chair and let the healing music waft over you.

Calgary businesses that provide products and services used by PWCS are being invited to thank them for their financial and moral support at educational events over the past few years. There will be no formal presentations but information will be an available.

Registration is first come first serve and space is limited. Cost $10 ($5 for low income)
To register contact: espc[[at]]shaw.ca

New MCS Support and Info group in Alberta

admin — Sun, 13 Sep 2009 21:50:31 +0000

There is a new support and advocacy group in Alberta called the Environmental Health Association of Alberta. Their mission is to provide information and support to people with Multiple Chemical Sensitivity and Electromagnetic Sensitivity. They have a web site which is currently under construction and are working on posters and info handouts.

In the mean time they can be reached at: 1(780) 977-9440 or at info[[at]]eha-ab.ca.

The web site that is under construction is: www.eha-ab.ca

Tried and True

admin — Sun, 13 Sep 2009 21:49:27 +0000

The Calgary health Region continues to offer high quality programs for people with chronic disorders including:

Row your own boat: a 6 week self management course
A lecture series on Chronic Pain
Smart moves – a revamped course run by Occupational Therapists teaching core strength and safe ways to move in every day life
The supervised exercise classes have been expanded to 4 levels based on current function and health status

Call 403-94HEALTH to self register

Varsity Natural Health Illness and Injury recovery Class Goes On line

admin — Sun, 13 Sep 2009 21:47:03 +0000

Improving core strength as a strategy to improve overall fitness and help decrease muscle pain is very important. Heather Campbell at Varsity Natural health offers a variety of classes for all levels including for people recovering from injury and illness .However for those that are too ill to attend the class, starting this fall, this one class will be videotaped and put online through varsity Natural Health website:

Varsity Natural Health

There will be a cost and one must register. Call 403-202-8658 for more information.

Missing my life video

admin — Sun, 03 May 2009 13:29:56 +0000

Video by the American Centre for Disease Control and Prevention about the condition Chronic Fatigue Syndrome/Myalgic Encephalopathy, titled “Missing My Life”.

Personal story by Cathy H

admin — Sun, 03 May 2009 13:21:53 +0000

This is a brief outline of my battle with the above diseases. I am a 65 year old woman, now a retired teacher. I was sent by my family doctor to a rheumatologist to determine what was wrong with me. He had been my family doctor for 30 years and couldn’t determine what was wrong with me. The rheumatologist did a lengthy verbal interview with me and it took about an hour and a half. She said that she was certain I had Fibromyalgia, but that until she had the results of some xrays, she could not be certain.

In my second visit, she said that I had Fibromyalgia. I had never heard about this disease. We determined that based on the symptoms I had that it could be traced back to when I was around 10 years old and at diagnosis time, I was then in my fifties.

I got manuals, books, internet info, etc and I was shocked to realize I had the majority of symptoms of fibromyalgia. I remembered my mother taking me to doctors when I was 10 yrs old because I had such pain in my arms and legs. I had horrific migraines, irritable bowel, that put me on the floor with pain, insomnia, anxiety attacks, and under stress, what I now know is labelled fibro fog. As a child, I had TMJ, and at age of 13-15, (I am not sure just when,) I dislocated my jaw yawning. It remained dislocated for over a week, and I couldn’t open my mouth any wider than to suck on a straw. My doctor said it was impossible to dislocate my jaw yawning, but that is what I did. I had to be put under ether and they finally got it back, and I am so very careful to this day, not to yawn very wide, and I chew very carefully. I cannot sleep on my sides, as the pressure on my jaws creates incredible pain in my jaws and in my teeth. I remember clearly, that I was always so incredibly tired, and any extreme exertion would leave me totally exhausted.

Sometimes I get unexplained pain on the skin of my arms and legs and it is sensitive to the gentlest touch. I have been treated for thyroid problems. When I quit a heavy smoking problem, within 2 weeks, I lost an enormous amount of weight, my legs swelled, I could clean my house, and all my neighbours homes, and still have energy left. My eyes bulged out, my hair was dry, and I could eat enormous amounts of food and still the weight dropped to 98 lbs. My family doctor said I had hyperthyroidism, (I was then 37 years old). I was put on medication and had to go for a blood test every week. After I year and no change in symptoms, I was sent to The Royal University Hospital for radioactive iodine. I had one drink of this and after several months, I started to slow down and feel “normal”. After several years, I developed hypothyroidism and have been on medication for this since I was about 40yrs. old. I have many allergies, sinus problems, sensitivity to smells, many that others don’t ever notice, especially chemical house hold cleaners, and cigarette smoke. Visually, I have many floaters, and my eyes are extremely dry. I have acid reflux and have to take meds every day for this. I cannot tolerate extreme cold, nor very hot weather. I have great difficulty with driving after dark, and this is something I also have had since I was a pre-teen. I have had bouts of tinnitis, and have frequent difficulty with swallowing.

I have ended up going to the hospital in an ambulance, for what they thought was a heart attack as I had extreme chest pains, and my blood pressure, which is usually normal had sky rocketed. I spent 5 hours in emergency, and they could find absolutely nothing wrong with me. I later learned that I have what is called chronic rib subluxations that cause pain in my chest and I have trouble breathing. My ribs slip out of place frequently and I have to go to a chiropractor and have them put back into place. The first time I went, I had 8 ribs out of place. This still happens, so when I feel a tightness in my chest and pain both back and front, I go for an adjustment. I find that my fatigue has increased, and I have to really pace myself. As a result, I have retired, even from the after school care I did, with only one student. I have osteoporosis, which was diagnosed in my 50’s.

One awesome gift I have been given, if Biofeedback. When I was 34 yrs old, I had three young children, and my migraines had escalated to the point of being weekly occurrences of 1-3 days in endurance. Someone mentioned to me (in 1977) that biofeedback was something that might help me. My family doctor was uncertain about just what it was, but sent me to a psychologist, who gave me about 8 sessions, hooked up to a machine that helped me understand the difference between tension and relaxation. She was amazing. It totally rid me of migraines, which had plagued me since I was 10 yrs old. I use it for relaxation when I find myself getting nervous and anxious. I am learning to pace myself, thanks Eleanor Stein for the emails, and since all my children are now grown and launched, I am able to do this. I am learning to take care of myself, which has been a most difficult thing to do.

It was a relief to learn that I actually had a disease, and while it seems that it is still not understood by many, it is not “just in my head”. I hope that my story is of use to others with these diseases and symptoms. Thank you.

Cathy H

Altered amino acid homeostasis in subjects affected by Fibromyalgia

admin — Sun, 03 May 2009 13:17:41 +0000

Source: Clinical Biochemistry, Mar 9, 2009

by Laura Bazzichi, et al.
March 14, 2009

[Note: Amino acids are building blocks of the proteins responsible for virtually all metabolic activities in living cells. The body can produce 10 of these acids, but the other 10 (“essential” amino acids) must be supplied via protein in the diet or supplements. These can’t be stored, and failure to obtain even 1 of the essential 10 every day results in degradation of the body’s muscle & other proteins.]

Objectives: To evaluate plasma amino acids (AA) concentrations in patients affected by fibromyalgia (FM) and to study the relationships between their levels and FM clinical parameters.

Design and Methods: 20 amino acids were assessed in 34 FM patients and in 18 healthy volunteers by means of a modified version of the Waters picotag method.

Results: Significant lower plasma
• Taurine,
• Alanine,
• Tyrosine (Tyr),
• Valine,
• Methionine,
• Phenylalanine,
• Threonine concentrations
• And sum of essential amino acids were observed in FM patients vs. healthy controls (P<0.05).

Tyrosine CAAs [competing amino acids] ratio and the sum of amino acids competing with tryptophan for brain uptake resulted significantly reduced in FM (p<0.05).

Significant correlations were found between FM clinical parameters and certain amino acids.

Conclusion:

• Our results suggest a probable defects of gut malabsorption of certain amino acids in FM patients.

• Moreover, given the reduced Tyr CAAs ratio in FM patients, a possible impairment of catecholaminergic system in the FM syndrome may be suggested. [Catecholamines are substances derived from the amino acid tyrosine and produced in the medulla of the adrenal gland that act as neurotransmitters or hormones, such as dopamine and adrenaline.]

Source: Clinical Biochemistry, Mar 9, 2009. PMID: 19281806, by Bazzichi L, Palego L, Giannaccini G, Rossi A, De Feo F, Giacomelli C, Betti L, Giusti L, Bombardieri S, Lucacchini A. Department of Internal Medicine, Division of Rheumatology, University of Pisa, Pisa, Italy. [E-mail:l.bazzichi@int.med.unipi.it]

Tips for Winning a Fibromyalgia or Chronic Fatigue Syndrome Disability Case

admin — Sun, 03 May 2009 13:04:24 +0000

by Jonathan Ginsberg, Attorney, Atlanta, Georgia

Jonathan Ginsberg is a Social Security Disability case lawyer specialized in representing patients with chronic illnesses such as Chronic Fatigue Syndrome and Fibromyalgia. He maintains a “Social Security Disability” website offering resources from disability lawyers all over the U.S., plus a blog and radio program where patients may submit questions and receive professional responses. Though he uses examples from FM cases here, the concepts apply equally to CFS and other “invisible” disabilities.

Read full article

Research Update and Clinical Tips from the Experts Podcast

admin — Mon, 12 Jan 2009 00:55:45 +0000

Podcast fed from The Faculty of Medicine at the University of Calgary, Continuing Medical Education, by Nancy Klimas, MD.