Principal Researcher:
Tiffany Boulton, MA
Doctoral Candidate
Department of Sociology and Social Policy
University of Leeds
Leeds, United Kingdom
Email: fmsresearch.leeds@gmail.com
Website: http://www.sociology.leeds.ac.uk/research/students/boulton.php

I am a PhD student at the University of Leeds and I am currently recruiting participants for a research project that examines the experiences of women and men living with fibromyalgia in Canada and the UK. If you think that you might be interested in participating in this research project, please take a moment to read the following. I would like to thank you in advance for taking the time to read this information and for your interest in the research project.

Your involvement in this research project, if you choose to participate, will require approximately 1 – 2 hours of your time. During this time you will be asked to share your experiences of living with fibromyalgia. . There will be questions on the following topics: receiving a diagnosis; identity; relationships with family and friends; paid and unpaid work; interactions with health and service providers; access to formal and informal support. In addition, during the interviews I will collect general demographic information (i.e. age, ethnicity, occupation, education level, relationship status, and number of children).

The interview will take place in a location that is most convenient for you, such as your home or a local coffee shop or community centre.

The information gathered during the interview is not meant to identify you in any way. Your identity will remain anonymous and the information you provide during the interview process will be kept strictly confidential.

The results from this research project will be presented in my PhD thesis. In addition, the results may be presented at academic conferences, public lectures and in writing in academic journals. At no time, however, will your name be used or any identifying information revealed.

If you are interested in participating in this research project, or if you have any questions about this research, please feel free to contact me, Tiffany Boulton, at fmsresearch.leeds@gmail.com

You can now find us on Facebook at: http://www.facebook.com/pages/National-MEFM-Action-Network/119761554710463 and on Twitter at: www.twitter.com/mefmaction.

We hope that you will take a look and join our pages. We look forward to connecting with you on these social network sites.

The National ME/FM Action Network is a Canadian non-profit organization that reaches out around the world. We were founded in 1993 and are dedicated to advancing the recognition and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Syndrome (FMS) through education, advocacy, support, and research. Our organization seeks to effect positive change in the attitudes, policies, and practices of government, medical governing bodies, business, the media, and the general public.

We look forward to hosting the 4-day 10th International IACFS/ME Research & Clinical Conference – Translating Evidence into Practice: Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses in Ottawa, Canada – Sept. 22 – 25, 2011 at the Crowne Plaza. There will also be a one-day patient conference on Thursday, September 22nd, 2011. More information is available on our website www.mefmaction.net.

As someone who suffers from ME/CFS and as most of our board members either suffers with ME or FM the question always comes up, “How do I get back a certain amount of quality of living in order to be able to do some of the things that I once loved?”

While studies are underway way or new discoveries are being made, we’re all left with the big question “What do I do in the meantime?”

Everyone’s illness takes on different forms, levels of pain and fatigue varying sometimes day to day. The level of frustration for patients can be insurmountable with the lack of knowledge or compassion from the medical community. This leaves patients feeling overwhelmed and “not credible” in the eyes of friends and family. Finally, once you have visited every specialist that the medical community has to offer and are offered little or no answers, we are left on our own. This is where we all must take an active role in managing our health. We must continue to seek medical advice but must also try to find ourselves doctors that are compassionate. Most of us at some point turn to alternative practitioners. By trying to understand the root causes such as dietary intolerances, allergies and hormonal imbalances to name a few, we can slowly start taking charge of our level of wellness.

As a Society and as patients, we have worked hard to bring together some ideas and professionals that share the same goal: To increase our quality of living, be proactive in our health management and to work with compassionate professionals.” These goals are what have led us to create our new “Partners in Wellness” program with Dr. Chelsea Frederick, ND. We will continue to focus and build our “Partners in Wellness” network and cover topics that matter most to all of us.

Healthy Wishes,
Danielle Remillard, Executive Director
Naturopathic Medicine – Dr. Chelsea Frederick, ND

Partners in Wellness

We are excited to partner with Dr. Chelsea Frederick, ND and her colleagues here in Calgary.

Dr. Frederick, ND is passionate about helping her patients achieve a higher level of health and help them understand how they can help themselves with these illnesses. There are no current “cures” for these illnesses, but with better understanding of the underlying health issues and triggers, you can help actively manage your health.

To contact Dr. Frederick, ND for a consultation and to learn more about the ME/FM program please visit our “Partners in Wellness” section. See the ME FM Program outline here.

Seeking Donations

Please note that we are seeking DONATIONS in order to continue our work for The ME/FM Society of Alberta.  IF YOU WOULD LIKE TO CONTINUE TO SUPPORT OUR EFFORTS WITH THE SOCIETY PLEASE visit our DONATION SECTION.

WE APPRECIATE ANY AND ALL SUPPORT!

Personal account and information about ME/CFS, including Clinical Definitions, Viruses involved, symptoms, some treatments and functioning levels.

• http://www.cbc.ca/health/story/2010/04/07/blood-donations-chronic-fatigue-virus.html
• http://www.healthzone.ca/health/newsfeatures/article/791225–virus-leads-canadian-blood-service-to-ban-certain-donors

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

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

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