Charlotte CFS/ME/FM Support Group Newsletter
for July 1, 2010
Dear Members,
As I listed in my last several newsletters, during July and August, instead of Thursday night meetings (3rd Thursday of the month), we'll have luncheons at 1:30PM the afternoon of that day instead. This is a great opportunity to have some casual time to get to know one another better. I'll send out a reminder just before the July 15th luncheon.
July 15th; 1:30PM, at Souper Salad, 10046 E. Independence Blvd, Charlotte
August 19th; 1:30PM, at Panera Bread, 7510 Pineville Matthews Rd. Charlotte
No regular meetings on the 3rd Thursday of the month during July and August.
Regular meetings will resume September 16th.
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The first article is long so I'd advise to first skim thru to look for articles that interest you the most before you attempt to read the long one. I personally print long articles out to read later.
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BREAKING NEWS:
Gendringen, NL (MMD Newswire) June 22, 2010 -- The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture.
In the October 8, 2009 issue of Science Express, the Lombardi-Mikovits group at the Whittemore Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) reported that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV). Only 3.7% of 218 healthy subjects tested were positive for this gammaretrovirus. Since that time, a number of research groups have proved unable to independently confirm these findings.
On Friday last, the AABB released an Association Bulletin recommending that its member blood collectors actively discourage potential donors who have been diagnosed with CFS from donating blood or blood components. This interim measure was proposed by the AABB Interorganizational Task Force on XMRV. This Task Force includes representatives from several government agencies, including the Center for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and the National Institutes of Health (NIH).
The fact that the measure was introduced suggests the presence of information not yet published. The ORTHO journalists were able to obtain a pdf document of the lecture given by Harvey Alter at the IPFA/PEI 17th Workshop on 'Surveillance and screening of Blood Borne Pathogens' in Zagreb. The International Plasma Fractionation Association (IPFA) represents the not-for-profit organizations around the world involved in plasma fractionation. The IPFA is based in Amsterdam, the Netherlands.
The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. "The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."
ORTHO contacted Dr.
Harvey Alter today for a reaction. He did not want to comment, but confirmed
that a paper is soon to be published.
ORTHO is a Dutch magazine for health professionals focusing on nutrition and
dietary supplements. ORTHO has been publishing reports on CFS since 1988.
Editor-in-chief: Gert E. Schuitemaker (PhD). Tel: + 31 (0) 315 695211 / + 49 (0)
170 808 9484. E-mail:
ortho@orthoeurope.com.
Paper soon to be released. June 22, 2010
“We (FDA & NIH) have
independently confirmed the Lombardi group findings." -
Dr. Harvey Alter,
National Institutes of Health
Gendringen, the Netherlands, Jun 22 - The FDA and the NIH have independently
confirmed the XMRV findings as published in
Science, October last.
This confirmation was issued by Dr. Harvey Alter of the NIH during a closed
workshop on blood transfusion held on May 26-27 in Zagreb.
Two journalists from the Dutch magazine for health professionals,
ORTHO, who have been
working on XMRV stories for several months, were able to obtain a copy of the
Alter lecture.
In the October 8, 2009 issue of
Science Express, the Lombardi-Mikovits group at the Whittemore
Peterson Institute (WPI), the Cleveland Clinic, and the National Cancer
Institute (NCI) reported that 67% of 101 chronic fatigue syndrome (CFS) patients
tested positive for infection with xenotropic murine retrovirus (XMRV). Only
3.7% of 218 healthy subjects tested were positive for this gammaretrovirus.
Since that time, a number of research groups have proved unable to independently
confirm these findings.
On Friday last (June 18, 2010), the AABB [formerly American Association of Blood
Banks, now with members in 80 countries] released an Association Bulletin
recommending that its member blood collectors actively discourage potential
donors who have been diagnosed with CFS from donating blood or blood components.
This interim measure was proposed by the AABB Interorganizational Task Force on
XMRV. This Task Force includes representatives from several government agencies,
including the Center for Disease Control and Prevention (CDC), the Food and Drug
Administration (FDA) and the National Institutes of Health (NIH). The fact that
the measure was introduced suggests the presence of information not yet
published.
The ORTHO
journalists were able to obtain a pdf document of the lecture given by Harvey
Alter at the IPFA/PEI 17th Workshop on 'Surveillance and Screening of Blood
Borne Pathogens” in Zagreb. The International Plasma Fractionation Association (IPFA)
represents the not-for-profit organizations around the world involved in plasma
fractionation. The IPFA is based in Amsterdam, the Netherlands.
The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the
Infectious Diseases and Immunogenetics Section of the Department of Transfusion
Medicine at the NIH Clinical Center in Bethesda, Maryland.
• "The data in the Lombardi,
et al.
Science
manuscript are extremely strong and likely true, despite the controversy," was
one comment on the XMRV findings reported by Alter in Zagreb.
• "Although blood
transmission to humans has not been proved, it is probable.
• "The association with CFS
is very strong, but causality not proved.
• "XMRV and related MLVs are
in the donor supply with an early prevalence estimate of 3% to 7%."
• "We (FDA & NIH) have
independently confirmed the Lombardi group findings."
ORTHO contacted Dr.
Harvey Alter today for a reaction. He did not want to comment, but confirmed
that a paper is soon to be published.
[Ed Note:
See also Hillary Johnson's blog ("THE
BIG ONE, June 21, 2010")
stating she's learned by the grapevine that an article now in press at "a highly
respected journal" may provide new, "even stronger" data connecting XMRV with
ME/CFS than the Mikovits article. Hillary wrote the notable book,
Osler's Web.]
Source:
ORTHO news release, June
22, 2010. ORTHO is a
Dutch magazine for health professionals focusing on nutrition and dietary
supplements, based in Gendringen, the Netherlands.
ORTHO has been
publishing reports on CFS since 1988. Editor-in-chief: Gert E. Schuitemaker
(PhD). Tel: + 31 (0) 315 695211 + 31 (0) 315 695211 / + 49 (0) 170 808 9484 + 49
(0) 170 808 9484. E-mail:
ortho@orthoeurope.com
There are a variety of sources for this info on XMRV, this is from Hillary Johnson's blog.
Date: Tue, 22 Jun 2010 19:34:55 -0400
From: Hillary Johnson via Co-Cure Moderator <ray@co-cure.org>
Subject: RES: Lombardi et al to be confirmed
I've published a brief notice about a study soon to be published in a
prestigious scientific journal by FDA and NIH scientists that abundantly
confirms the Lombardi et. al. Science paper of last October.
The story is on my first page, and on my update page
http://www.OslersWeb.com
and:
http://www.oslersweb.com/blog.htm?
Thanks, Hillary Johnson
(NOTE: Hillary Johnson is the author of the very important book "Osler's Web" - a book that tells the story of how CFS was negligently treated in the early years. For you history buffs, this will be both sad and fascinating how our government does and DOESN'T work.)
Hillary now offers her latest findings via her blog as noted above.
Reminders from Dr. Lapp:
Hunter-Hopkins Center is one of two sites in the USA currently participating in an open label study of Ampligen. Persons with CFS may qualify to receive Ampligen therapy. Details are available on the US government Clinical Trials website at: http://www.clinicaltrials.gov/ct2/show/NCT00215813?term=00215813&rank=1
The Hunter-Hopkins program is described at http://www.drlapp.net/ampligen.htm
If you are interested in joining the Ampligen Study or you have more questions, contact Wendy Fallick (Research Coordinator) or Dr. Black at Hunter-Hopkins.
Dr. Lapp's Web Site: www.drlapp.net
Dr. Lapp's Treatment Site: http://www.cfstreatment.info/
http://www.healthcentral.com/utils/newsweb/chronic-pain/news-sp.html
The Whittemore-Peterson Institute
How this institute came to be, read this snippet by Annette Whittemore:
"...Perhaps what is missing most from the public’s awareness is the description of the most severely ill patients, like Andrea, who, at times, was so ill and weak that she was unable to feed herself or walk unaided. As these patients’ immune systems weaken and various chronic infections take hold, they live their lives between doctor’s offices and their homes physically and emotionally isolated from their families, friends, and communities. Many go on to develop life-threatening complications. In a retrospective analysis, Leonard Jason found that those diagnosed with ME/CFS died of heart disease, cancer, or suicide at ages approximately twenty-five years younger than the normal population (3). Only detailed epidemiological studies will reveal the true complications of long term disease and mortality resulting from the complications of this disease.
The problems that patients experience when dealing with the healthcare system can be as difficult as the disease itself. Most doctors have difficulty diagnosing ME/CFS and when they do, are at a loss as to what to do for their patients. The lack of medical consensus is so great that most doctors disagree on the best treatment strategies or what, if any, biological treatments to consider. Doctors and patients are left to their own devices, experimenting with drug treatments that are unproven, toxic, or both. Scientific and educational information surrounding ME/CFS is conflicting and often consists of anecdotal observations from physicians. Additionally, many patients are told they suffer from “faulty thinking” about the illness and are then prescribed cognitive behavioral therapy and graded exercise therapy."...
This is a PDF file but go to page iii to look thru the Table of Contents, then you can scroll to a particular page of interest.
This was passed along to me to share some time ago. Its not new news, but worth repeating.
http://chronicillness.suite101.com/article.cfm/dangers_of_fluoroquinolones
Pain characteristics of people with chronic fatigue syndrome
http://www.meresearch.org.uk/research/projects/pain.html
Click for Free Donations to Animals, Breast Cancer, Hunger, etc.
Many of you already do this, but I want to let others know how they can sign up for a daily reminder to click on these sites to get free donations to various charities. Its so easy, once you sign up, you just click on each to bring up the page and then click on a colored large button, then move on to the next tab at the top. There are about half a dozen charities you can help.
http://greatergood.com/emails/2010/reminder-062310-ARS-w.html
Your Smile for Today
http://purinaanimalallstars.yahoo.com/?v=7652402&l=100000085
Nancy Henson