If you haven’t already signed it – sign the CFS Definition Petition today at: http://CFSdefinitionpetition.notlong.com
WordPress Shortlink for Media Round up: 15: http://wp.me/p5foE-2dr
Lectures and presentations
From Marly C. Silverman via Co-Cure
24 October 2009
Lecture by Nancy Klimas, M.D.: The New XMRV Virus and What it Means to Chronic Fatigue Syndrome Patients Media Round up: 15
The New XMRV Virus and What it Means to Chronic Fatigue Syndrome Patients
Join us in a special lecture by Nancy Klimas, M.D. for a discussion on exciting new research advances in chronic fatigue syndrome (CFS). Dr. Klimas is a professor of medicine, psychology, and microbiology and immunology at the University of Miami Miller School of Medicine and the Miami Veterans Affairs (VA) Medical Center.
Dr. Klimas directs the UM/VAMC Gulf War and Chronic Fatigue Syndrome Research Center, initiated with a National Institutes of Health (NIH) Center Award, and supported by VA and NIH funds. The center has focused on better understanding of the neuro-immune-endocrine interactions in CFS and Gulf War Illness (GWI), and their role in the pathogenesis of these complex disorders. She is the immediate past president of the International Association for Chronic Fatigue Syndrome (IACFS-ME), the organization of researchers and clinicians dedicated to furthering our knowledge of this disabling illness. Currently, she is a member of the congressional HHS Advisory Committee , and is a distinguished member of the Medical Advisory Board of P.A.N.D.O.R.A.
Date/Time: Saturday, November 7, 2009, 2-4pm
Location: University of Miami Miller School of Medicine, Rosenstiel Medical Science Building, 1600 NW 10th Avenue, 3rd floor auditorium, Miami, Florida.
Sponsored: By P.A.N.D.O.R.A. – Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy Inc, a 501 c 3 patient advocacy organization headquartered in Coral Gables, Florida, in partnership with CFSKnowledgecenter.com and the local empowerment/support groups in South Florida.
Cost: Free, space is limited
RSVP: The auditorium holds 150 and to ensure refreshments and a “goodies bag” is held for you, RSVP today to Elizabeth Goldberg at firstname.lastname@example.org or 305-243-3492.
Parking: Park Plaza West Garage
Direction to Parking Garage:
From I-95, points north
Exit I-95 at SR 836 West, exit number 3-A. Take the NW 14th Street exit. Continue straight on NW 14th Street. Turn right onto NW 12th Avenue. Take a right onto NW 16th Street. Yield at the sign and take a right into the parking lot.
From I-95, points south and east
Exit I-95 at SR 836 West, exit number 3-A (left exit). Exit SR 836 at NW 12th Avenue and turn right onto NW 12th Avenue. Turn right onto NW 16th Street and continue on NW 16th Street. Yield at the sign and take a right into the parking lot.
From SR 836, the Airport, and points west
Take SR 836 East and exit at NW 17th Avenue, North. Pay $1.25 toll and follow the Hospitals and Civic Center Exit. Follow the signs and curve to the left. Turn right towards North, NW 17th Avenue. Stay in the right lane and bear to the right. Yield at the sign and merge into the far left lane. Turn left onto NW 13th Terrace; continue straight onto NW 14th Street. Take left onto NW 12th Avenue. Turn right onto NW 16th Street and continue on NW 16th St. Yield at the sign and take a right into the parking lot.
Directions from Garage to Rosenstiel Medical Science Building: Exit the garage at the north end. Once on the ground floor, follow the sidewalk east on 16th Street (the same street at which you entered the garage). Rosenstiel Medical Science Building is approximately 50 yards on the right. Upon entering Rosenstiel Medical Science Building, inform the security guard that you are attending the CFS seminar. Take the elevator to the third floor and follow the signs to the auditorium.
CFSAC (CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE) meeting October 29-30, 2009
10:15 a.m. Presentation: XMRV Association with CFS Dr. Daniel Peterson Whittemore Peterson Institute
3:30 p.m. CFS and FII/MBP Dr. David Bell
In a post on 16 October
CFSAC Agenda Presentation: XMRV Association with CFS Dr D Peterson WordPress Shortlink: http://wp.me/p5foE-2ba
I flagged up the forthcoming CFSAC (CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE) meeting.
For Supplementary Information see PDF: http://edocket.access.gpo.gov/2009/pdf/E9-21334.pdf or html:
Click for AGENDA
CFSAC Agenda – October 29-30, 2009
U.S. Department of Health and Human Services
Both days of this meeting will be videocast (Realplayer required)
Go to the NIH website at: http://videocast.nih.gov/FutureEvents.asp
Scroll down to October 29th Chronic Fatigue Syndrome link for: http://videocast.nih.gov/summary.asp?live=7908
Air date: Thursday, October 29, 2009, 9:00:00 AM
Time displayed is Eastern Time, Washington DC Local
October 30th Day 2: http://videocast.nih.gov/summary.asp?live=7909
You will be able to view the event at: http://videocast.nih.gov when the event is live.
FAQ on video streaming at: http://videocast.nih.gov/faq/
The videocast will be archived for a few weeks after the meeting. Mintutes of the meeting will be posted on the CFSAC website with archived copies of the testimonies provided for the meeting.
CFSAC webpage: http://www.hhs.gov/advcomcfs/
Videocasts of Days One and Two of the previous meeting (27 – 28 May 09) can still be viewed at:
Day One: Wed 27 May: http://videocast.nih.gov/Summary.asp?File=15130 (Realplayer required)
Day Two: Thurs 28 May: http://videocast.nih.gov/Summary.asp?File=15136 (Realplayer required)
From: RESCIND via
Help ME Circle 25 October 2009
Editorship : email@example.com
***Please distribute far and wide!***
Support the 500 Professionals of the IACFS/ME – Reeves Must Go
On May 27th and May 28th, 2009, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) convened in Washington, D.C. Among their recommendations to the Secretary of Health and Human Services was a call for new and progressive leadership at the CDC’s ME/CFS research division.
We, the public, need to back the IACFS/ME and the CFSAC. Under Bill Reeves’ regime, funding has routinely decreased and increasingly broad definitions which have ceased to have any clinical meaning or research value have been implemented.
Under Reeves’ direction the CFS program is being slowly strangled.
A couple of weeks ago, Dr. Judy Mikovits, who is a retrovirus expert at the Whittemore Peterson Institute, released the results of a study which provided overwhelming evidence that xenotropic murine leukemia virus-related virus, or XMRV, could very well be the third human retrovirus.
Mikovits found that in a study of 101 CFS patients, 67% were found to have XMRV in their cells, but this is really not new news. In 1991 Dr. Elaine Defreitas found retroviral DNA in 80% of her study’s 30 CFS patients. The CDC “replicated” her study, did not follow her exact procedure, and ended the study prematurely while ostracizing Defreitas.
What does Reeves say about Mikovits recent discovery? Without doing any study or due diligence Reeves dismisses the findings by saying that they are “unexpected and surprising” and that it is “almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS.”
Deceit and incompetence have increasingly become the order of the day. The money that Bill Reeves has been receiving has been terribly mismanaged as he desperately strives to forestall the slow but inevitable pace of biomedical research.
Inappropriate management of funds prevents collaboration with biomedical experts, as well as collaboration with psychosocial experts who are not trying to build a career in psychosomatic medicine.
Bill Reeves must be held accountable.
Inaccurate stereotypes persist because Bill Reeves has not been accurately educating the public on the seriousness of this disease.
CFS is not a disease of “feeling a little tired,” no matter what you call it; this is a severe neuro-immune disease of among other things, debilitating exhaustion completely out of proportion to exertion. Patients may be too exhausted to even be able to chew their food, leave their beds and much less even work – and remain so year after year. Is that your neighbor’s experience of tired?
Perhaps you suffer from CFS, perhaps your patients do, or perhaps a loved one does; your best interests are not and have not been at the heart of the CDC’s program. What’s at the heart of the program is job security for Bill Reeves, his paycheck and collaboration with his pals – not finding ways to combat and track this horrible disease.
We need you now more than ever. Right now is the first real chance that we have had in nearly 30 years to fight Reeves in force; to fight for you, your loved ones, or your patients. Everyone from researchers to advocates are in agreement – Reeves must go. And we must make it happen. No one will do it for us.
Join members of the IACFS/ME at the CFSAC’s October 29-30th meeting in Washington, D.C. Do not let the hard work of other advocates and researchers over the years be for nothing. We need to show that we cannot be silenced and we will never give up.
If you cannot personally attend, find someone to attend in your place. Ask your parents, your children, your spouses or friends to attend in your place. Ask your elected officials to have aids attend.
The answer is always no if you don’t ask – we must make it happen – none of us can live with the alternative.
Reeves must go.
Reeves CF Definition Petitition
From Tom Kindlon
“Please use whatever resources you have access to (e.g. blogs, Twitter, Facebook, other social networking sites, newsletters, E-mail lists/discussion forums, etc) to highlight the existence of the petition. The petition also links to some critiques of the definition. Many people have also written interesting comments.
Note: I have no intention of closing the petition site until the CDC stop using this flawed definition.”
I’m appending the text of the petition below with a link.
We call on the Centers for Disease Control and Prevention (CDC) to stop using the “empirical” definition (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.
The CDC claim it is simply a way of operationalizing the Fukuda (1994) definition. However the prevalence rates suggest otherwise: the “empirical” definition gives a prevalence rate of 2.54% of the adult population compared to 0.235% (95% confidence interval, 0.142%-0.327%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].
The definition lacks specificity. For example, one research study found that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the empirical/Reeves definition.
If you haven’t already signed it – sign the CFS Definition Petition today at: http://CFSdefinitionpetition.notlong.com
The 1991 DeFreitas paper
Abstract and Full text here: http://www.pnas.org/content/88/7/2922.full.pdf+html
Proc. Natl. Acad. Sci. USA
Vol. 88, pp. 2922-2926, April 1991
Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome
(Epstein-Barr virus syndrome/infectious mononucleosis/myalgic encephalomyelitis/polymerase chain reaction/in situ hybridization)
The Wistar Institute, 3601 Spruce Street, Philadelphia, PA 19104
Contributed by Hilary Koprowski, November 13, 1990
ABSTRACT Chronic fatigue immune dysfunction
Chronic fatigue immune dysfunction syndrome (CFIDS) is a recently recognized illness characterized by debilitating fatigue as well as immunological and neurological abnormalities [Straus, S.E. (1988) J. Inf. Dis. 157, 405-412]. Once thought to be caused by Epstein-Barr virus, it is now thought to have a different but unknown etiology. We evaluated 30 adult and pediatric CFIDS patients from six eastern states for the presence of human T-lymphotropic virus (HTLV) types I and II by Western immunoblotting, polymearse chain reaction, and in situ hybridization of blood samples. The majority of patients were positive for HTLV antibodies by Western blotting and for HTLV-II gag sequences by polymerase chain reaction and in situ hybridization. Twenty nonexposure healthy controls were negative in all assays. These data support an association between an HTLV-II-like virus and CFIDS.
Previous ME agenda Media Round-ups listed at the foot of this post: http://wp.me/p5foE-2cS