Dear Fellow ME/CFS patients, families and advocates~
Ten days ago, the American Red Cross announced a new plan to "actively deny" CFS patients from donating blood. The Red Cross controls about 50% of the US blood supply.
On December 6th we worked with the MCPWA.org to put an ad in the Washington Post about Dr. Alter and Dr. Lo's article that strongly backed up the SCIENCE paper from October, 2009 from the WPI.
Now, on the 14th of December, the FDA panel voted 9 to 4 to recommend banning any blood donations from any ME or CFS patients until XMRV is ruled in or out as a possible cause of disease.
Dr. Harvey Alter, after a long day of back and forth, where Drs. Mikovits, Hansen and Lo literally "wiped the floor" with naysayers like Dr. Coffin and Dr. Stoye, Dr. Alter came out with an unplanned statement which ended with:
“I'm not a CFS Dr, but have learned a lot in last 6 months. Absolutely convinced when you define this by proper criteria, it's a very serious, medical disease. Chars of a viral disease. If it's NOT XMRV, we must continue the research to find out what is.” (thank you ValB626 for the transcription!)
It is our recommendation that you all write to THANK Dr. Alter at:
Please write him a clear, "concise and sincere" THANK YOU for his kind/wise comments.
XMRV might be the cause of ME and CFS and FMS and maybe even Autism, MS or Gulf War illnesses...not to forget Prostate Cancer, Lymphoma and possibly Breast Cancer. Whatever the cause, Dr. Alter has been convinced that M.E. and CFS are REAL! And they are SERIOUS!
THANK YOU DR. ALTER for being the ONE new SANE Voice in the Room to STAND UP and SPEAK the TRUTH LOUD and CLEAR.
Thank you to ValB626 and XMRV Global Action for the following statement from Harvey Alter, M.D.
"when a group finds a new agent, become biased it's real. When it's not found by another group, they become even more biased it's unreal.
Our goal should be to find the truth. The truth will out over the next year. I concur we have no evidence for causality, esp when we're at the LoD and assay perf is so critical.
But I still want to counter by saying that the current evidence for disease association is very strong that XMRV or MLV is strongly associated with CFS.
In those labs who do find the agent, it's very reproducible. Year after year, same patients.
Confirmed by sequencing, reproducible over time.
Dr. Hanson has demonstrated how critical the assays are. When tweaked assays, findings identical to Lo lab.
Diversity of XMRV/MLV being confirmed in WPI lab, so not only agent being confirmed there.
In 100s of negative controls in same lab, extremely negative, has done what Coffin recommended was also negative. Always neg for contamination. It isn't logical to suggest otherwise.
Stoye used single-case anecdotal info to try to make a case. Simply because it has happened in the past isn't valid to negate reproducible data from 4 different laboratories.
I'm not a CFS Dr, but have learned a lot in last 6 months. Absolutely convinced when you define this by proper criteria, it's a very serious, medical disease. Chars of a viral disease. If it's NOT XMRV, we must continue the research to find out what is."
Information taken from the National Institutes of Health Clinical Center
Harvey Alter, MD
Distinguished NIH Investigator
Chief, Clinical Studies
Associate Director of Research
Department of Transfusion Medicine
B.A., University of Rochester
M.D., University of Rochester School of Medicine
Dr. Harvey Alter earned his medical degree at the University of Rochester Medical School, and trained in internal medicine at Strong Memorial Hospital and at the University Hospitals of Seattle. In 1961, he came to the National Institutes of Health as a clinical associate. He then spent several years with Georgetown University, returning to NIH in 1969 to join the Clinical Center's Department of Transfusion Medicine as a senior investigator becoming Chief of the Clinical Studies and Associate Director of Research in the Department of Transfusion Medicine at the NIH Clinical Center.
Dr. Alter is also a clinical professor at Georgetown University.
Dr. Alter co-discovered the Australia antigen, a key to detecting hepatitis B virus. Later, Dr. Alter spearheaded a project at the Clinical Center that created a storehouse of blood samples used to uncover the causes and reduce the risk of transfusion-associated hepatitis. He was principal investigator on studies that identified non-A, non-B hepatitis, now called hepatitis C. His work was instrumental in providing the scientific basis for instituting blood donor screening programs that have decreased the incidence of transfusion-transmitted hepatitis to near zero.
In 2000, Dr. Alter was awarded the prestigious Clinical Lasker Award and in 2002, he became the first Clinical Center scientist elected to the National Academy of Sciences (NAS) and in that same year was elected to the Institute of Medicine. Only a small number of scientists nationally are elected to both these scientific societies.
Selected Honors and Awards
Appointed as NIH Distinguished Investigator, 2008; Presidential Award, Society for Advancement of Blood Management, 2006; Recipient of the First International Award for Science, INSERM, Paris France, 2004; American College of Physicians Award for Outstanding Work in Science, 2004; Elected to National Academy of Sciences, 2002; Distinguished Scientist Award American Liver Foundation, 2002; Presidential Award, International Society of Blood Transfusion, 2002; Elected to the Institute of Medicine, 2002; Albert Lasker Clinical Research Award, 2000; James Blundell Prize, British Blood Transfusion Service, 1994; Karl Landsteiner Award, American Association of Blood Banks, 1992, Elected to the American Association of Physicians, 1992; PHS Distinguished Service Medal, 1977
Thank You R.E.S.C.I.N.D. for letting me rePost sections of this Info from your website.************************************
Thank YOU to ALL of our Heroes~ Be they The WPI, Dr's, Parents, Friends, Advocates, Patients, we LOVE and Need ALL of you RIGHT NOW to help MOVE This Cause FORWARD and Help us SAVE Our LIVES and Save those lives of the Innocent Public that has had this TRUTH Hidden from them also for 25 years.
Thank YOU WPI for adding Dr. Jamie Deckoff-Jones as the Chair to the Newly formed Clinical Advisory Board. What a PERFECT marriage !! Now you all Rock !!!
PS: Just this morning I received my XMRV test results and I am Positive.
As a 23 yr ME/CFS patient that TRULY Believes I got it while working in the hospital for 17 years before I had my Triggering Event, I HONESTLY HOPE that we can get the PR and Public OUTCRY this Disease DESERVES. I already lived thru the days of HIV/AIDS and had to go to the SF Conferences for my hospital in the 80's and lost 5 of my closest friends to THAT illness... and have already been tested twice for HIV and was Negative.
It's a CRIME to HUMANITY that the CDC has let THIS illness go on for 25 years and spread to the point where over 1 million and maybe 4 million of us in the USA already have XMRV XAND not to forget the 10s of millions of asymptomatic citizens walking around STILL donating Blood and they are NOT screening the Blood supply for that YET......
WHAT MUST WE DO TO MAKE THEM "WAKE UP" ?????