December/January/February 2010
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Greetings to all!
I hope you had a very merry and blessed Christmas and New Year! I bet you’re surprised to get this newsletter. Thanks to Cheryl Byer’s generous offer of help, we are able to get the newsletter going again. It’s going to be changed to a quarterly newsletter, at least for now. Time-wise, it had simply become too much for me to do on my own and keep up with the other necessary duties for the group. Since this newsletter reaches patients who are homebound and who are otherwise unable to attend meetings, it’s very important to me to keep it going.
I’m sure most of the CFIDS patients have heard about the exciting new discovery with this retrovirus XMRV. This newsletter contains information from the CFIDS Association as to what it is and what it means. Because of the strong overlap between CFIDS and FM, this could be a potential finding for FM patients as well.
CFIDS/FM Awareness Day is May 13th. I would like to have an activity of some kind for it this year, even if it’s just sitting and passing out information. If you are interested in participating in any way at all, even if it’s stuffing envelopes, please contact me and let me know what you feel you could do.
Thank you, and I hope 2010 will be a very good year for all of us!
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XMRV from the Whittmore Peterson Institute
Overview
The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response inc, which result in chronic immune activation and immune deficiency.
We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.
Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others.
What is XMRV?
Researchers at the Whittemore Peterson Institute in
collaboration with the National Cancer Institute and the Cleveland Clinic, have
recently discovered the presence of a retrovirus in blood samples from patients
diagnosed with chronic ME/ CFS. The human retrovirus, identified as XMRV, has
now been found to be in over 95 percent of the patients’ blood samples in this
study group.
XMRV is a human retrovirus and is similar to HIV and HTLV-1. It was first
identified by Dr. Robert Silverman, in prostate cancer tissue of men with a
specific genetic defect in their antiviral defense pathway. Prior to the
Whittemore Peterson Institute study, XMRV had not been isolated from a human
diseased population or been shown to be infectious and transmissible.
What is the link between XMRV and ME/CFS, fibromyalgia and other neuro-immune diseases?
Our initial research showed that 67% of the ME/CFS
patient samples tested positive for XMRV. Further work has found that 95%
tested positive. Work continues to understand how this virus works within
neuro-immune diseases, but this discovery proves a significant correlation
between this serious retrovirus and these diseases. Our work suggests, but does
not prove, that XMRV may be the underlying cause of ME/CFS. Much additional
work needs to be done to understand how XMRV causes disease and what types of
diseases it is linked to it.
A few fibromyalgia samples were tested and yes, they were positive. However the
sampling was very small, and testing will have to continue on a much larger
scale to begin to draw significant conclusions. In addition, many patients with
ME/CFS have been given the diagnosis of fibromyalgia when in fact they have
ME/CFS and fibromyalgia.
Where can I get tested for XMRV?
The WPI has developed a blood test for the detection of XMRV. We have an agreement with VIP Dx Lab to license the test. VIP Dx is a very qualified lab and we are confident in their ability to provide the test. More information is available by visiting their website www.vipdx.com. WPI cannot offer individual testing and results from our research lab. Please check back here for updates. (Ed: At this point insurance companies will not cover the testing and it’s a highly expensive test).
What can my doctor do for me if I test positive to the XMRV virus?
Research is still ongoing to determine the best treatments for those who are positive for XMRV. It is possible that antiviral therapies developed for other retroviruses may be useful against another RNA virus like XMRV. However, these are generally toxic therapies with considerable side effects making it imperative that one be very careful before beginning any new therapies. Obviously, only begin any therapies approved by your physician.
(For the full text of this Q&A, go to http://www.wpinstitute.org/xmrv/xmrv_qa.html. Our group also has brochures available from this institute on XMRV)
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Dysregulation Spectrum Syndrome (found at http://www.fmnetnews.com/basics-overlap.php)
Fibromyalgia syndrome (FMS), chronic fatigue syndrome (CFS), multiple chemical sensitivity syndrome (MCS), myofascial pain syndrome (MPS), and other conditions form a family of overlapping syndromes. In fact, researcher Muhammad Yunus, M.D., of the University of Illinois College of Medicine, claims, most patients have more than one syndrome. Thus, he views FMS and CFS as being part of a larger spectrum of conditions, which he calls Dysregulation Spectrum Syndrome or DSS (see diagram below). Dr. Yunus uses the term dysregulation to mean biophysiological abnormalities, possibly in the body's neurological, hormonal and chemical systems.
Backing up Dr. Yunus’ commentary are studies by Dedra Buchwald, M.D., of the University of Washington, Anthony Komaroff, M.D., of Brigham and Women’s Hospital and Don Goldenberg, M.D., of Newton-Wellesley Hospital. It is always important to keep these overlapping syndromes in mind because the presence of one or more syndromes could impact your treatment. These three researchers have shown that CFS and FMS overlap in patients by as much as 75%. When it comes to MCS, this syndrome is present in roughly 50% of FMS- and CFS-diagnosed patients.
Most practicing physicians and researchers alike will tell you that the chronic pain diagnosis a person first receives is often colored by their chief symptom complaint. For example, widespread muscular pain is often diagnosed by rheumatologists as fibromyalgia syndrome. A person who is overcome by extreme fatigue and flu-like symptoms might consult an infectious disease expert and receive the diagnosis of chronic fatigue syndrome. A person who has severe jaw pain might see a dentist and be told that they have temporomandibular joint dysfunction (TMJD). People who appear to have allergic-type symptoms to a number of chemicals, foods, or odors may be informed by an allergist that they have MCS. Similar situations occur with the other conditions in the family of Dysregulation Spectrum Syndrome.
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The Lane County Chronic Fatigue Syndrome and Fibromyalgia Support Group is a non-profit, non-partisan educational, support, and advocacy group for patients who have CFIDS and/or fibromyalgia. We are members of both the CFIDS Association of America and the National Fibromyalgia Association. We do not have 501c3 status at this time and donations are not tax deductable. This support group will meet every 4th Saturday from 3:30-5 at the Eugene Public Library. The group will meet in the Singer Room if possible but this is subject to availability. We do not charge membership fees or anything else for this group; however, donations to help with costs are always appreciated. Donations can be sent to the address listed below.
You have received this because you have shown interest in the support group. If you no longer wish to receive updates or information, please email lanecountycfsfibro@yahoo.com and put “unsubscribe” in the subject line.
Lane County Chronic Fatigue Syndrome and Fibromyalgia Support Group
3092 Delta Pines Drive
Eugene, OR 97408
(541) 341-1355
http://www.lanecountycfsfibro.synthasite.com
