Landmark study published in Science magazine today‏

[PlateletGal]

Its a shame that the CDC didn't discover this and that many CFS patients believe that the CDC has failed them. So I thank God for the Whittemore Peterson Institute and other organizations that are discovering more and more about Chronic Fatigue Syndrome (M.E.)

"In today’s issue of Science Express, researchers at the Whittemore-Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute report that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenobiotic murine retrovirus (XMRV), a gammaretrovirus associated with a subset of prostate cancer."

For the article... check out:

http://www.cfids.org/temp/whittemore-press-release-10-09.asp

[martinwhite]

From the Center for Disease Control's Intranet front page: http://www.cdcchatter.net/
New progressive leadership needed for CFS at CDC (Removal of Dr. William C. Reeves): Posted on Tuesday, September 29, 2009 - 12:00 AM (73740 Reads by CDC staff)

Calls for new progressive leadership in CDC's Chronic Fatigue Syndrome (CFS) program and a more appropriate location in the CDC organization, as well as concerns about use of CDC funds for CFS.Read full article: 'New progressive leadership needed for CFS at CDC' (1766 bytes more)
Calls for new progressive leadership in CDC's Chronic Fatigue Syndrome (CFS) program and a more appropriate location in the CDC organization, as well as concerns about use of CDC funds for CFS. Dr. William C. Reeves is the current head of the CDC's CFS program.


The Department of Health and Human Service's (HHS) Scientific Advisory Committee for Chronic Fatigue Syndrome and the International Association for CFS/ME have formally recommended a change of leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education. They recommend "that the CDC needs to identify a CFS program leader who is a progressive, open-minded, and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community." Based on estimates of increasing prevalence and the poor track record after 25 years of effort, the IACFS/ME is highly critical of the proposed 5 year strategic plan and urges that the CFS program be relocated to the National Center for Chronic Disease Prevention and Health Promotion which "contains the necessary expertise and leadership critical to establishing interventions to detect, control and prevent CFS."

Also at issue is the possible misuse of funds. Formally testifying before the CFSAC, Kim McCleary, President and CEO of the CFIDS Association of America, detailed concerns about the management of CDC funds allocated for CFS research.

Minutes of the DHHS Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, October 2008 http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20081028min.html
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting
Tuesday, October 28, 2008
9:00 a.m. to 5:30 p.m.
Wednesday, October 29, 2008
9:00 a.m. to 3:00 p.m.
Room 800, Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201
October 2008 http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20081028min.html

CFSAC recommendations,HYPERLINK "http://www.hhs.gov/advcomcfs/recommendations/05272009.html" May 2009 http://www.cfids.org/advocacy/testimony-mccleary-oct2008.pdf

IACFS/ME's recommendationsHYPERLINK "http://www.iacfsme.org/Home/tabid/36/Default.aspx" on CDC's 5 Year Strategic Plan for CFS Research, July 2009 http://www.hhs.gov/advcomcfs/recommendations/05272009.html
Committee Recommendations
May 27-28, 2009
CFSAC voted upon and agreed for the following recommendations to be forwarded to the Assistant Secretary for Health and the Secretary:
Recommendation # 1
Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.
Recommendation # 2
Provide adequate funding to CDC to effectively carry out a detailed 5-year plan. This should include, but not be limited to, immediate progress in these priority areas:
Identification of biomarkers and etiology of CFS;
Creation of guidelines for adult and pediatric CFS management in full partnership with organizations representing CFS scientific and clinical expertise;
Provision of web-based guidelines for CFS management given our current state of knowledge and expert opinion, again in full partnership with organizations representing CFS clinical and scientific expertise; and
Provision of comprehensive information about CFS in partnership with CFS experts to the scientific community, medical and mental health providers, educational institutions and the public for both adult and pediatric CFS through DHHS resources.
Recommendation # 3
Establish Regional Centers funded by DHHS for clinical care, research, and education on CFS. These centers will provide care to this critically underserved population, educate providers, outreach to the community, and provide effective basic science, translational, and clinical research on CFS.

[PlateletGal]

I'm not sure if the test is considered a research test, but I am aware of a laboratory that does the test. I'm thinking that insurance may not cover the testing at this pont.

VIP lab in Reno, NV (formerly Red Labs, USA) has several test kits for, or related to, this virus. One is a PCR test for the XMRV virus itself. For more information, google, "VIP Labs" for their website.

I'm not sure when we the treatment options will be available... but I hope very soon ! This is the new research institute that made the discovery:

http://wpinstitute.org/index.html

Annette Whittemore's daughter has Chronic Fatigue Syndrome and so that was the inspiration for the clinic. This new institute is not only researching CFS, but other neuro-immune illnesses as well.. including autism, fibromyalgia and atypical MS.

[kmil1999]

I'm a little slow on getting to all the info, but to start:

1.) Now that we know this is common, can we get our dr. to test and see if we have it?  Or is the test on in research?

2.) Again now tha we know this, how long till we can get a viable tx to help reduce or get rid of the retrovirus?

While I research, a couple of questions shout outs!
Thanks again for all the links,
Karen

[PlateletGal]

Where is everyone ? Wow... the press is picking up on this. It is now in the New York Times, The Washington Post and The Wall Street Journal.

Check it out:

http://news.google.com/news?hl=en&source=hp&q=virus%20%2B%20CFS&um=1&ie=UTF-8&sa=N&tab=wn


Dr. William Reeves should hold his head in shame and resign. If not.... we need to force him out.

[PlateletGal]

Virus Is Found in Many With Chronic Fatigue Syndrome
By DENISE GRADY
Published: October 8, 2009

XMRV is a retrovirus, a member of the same family of viruses as the AIDS virus. These viruses carry their genetic information in RNA rather than DNA, and they insert themselves into their hosts’ genetic material and stay for life.

http://www.nytimes.com/2009/10/09/health/research/09virus.html?_r=2&hpw

[PlateletGal]

RE: Today's new discovery

William Reeves, principal investigator for the Centers for Disease Control and Prevention (CDC)'s CFS public health research programme, says the findings 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".

source:

http://www.nature.com/news/2009/091008/full/news.2009.983.html

So Dr. Reeves, who in my opinion, is clueless is "surprised" by the findings. Well that is because he failed to listen to CFS patients and failed to read the research. Sheesh.... Dr. Chia (not a CDC physician) had already discovered entroviruses in CFS patients.

http://www.co-cure.org/Chia.htm


What is wrong with Dr. Reeves ?

[PlateletGal]

Woo hoo ! Its nice to see that you've been keeping up to date on that. This is something that is VERY important and I hope other CFS'ers here know about what Dr. Reeves, and the CDC for that matter, have done to us. One of the CDC's embarrassing scandals was published in the Washington Post. The CDC tried to make up for it by having their Public Awareness Campaign, but they are now up to their old tricks again. Dr. William Reeves should be fired.

ALL:

For more on the politics of Chronic Fatigue Syndrome (AKA: myalgic encephalomyelitis), please check out my journal and please consider doing what greenmount has asked... we need to e-mail the head of the CDC and fight for justice. I know... we are sick and tired, but if we don't take 2 minutes to write an e-mail... then who will be our voice ? The CDC has failed us. I really do need to write about (of course with links) what the CDC did recently in Arizona in a small town that had a cluster of cancer patients. That, along with the failures with my illness, has really opened my eyes.

Politics over people..... its wrong.  


CFIDS Association of America CEO Calls CDC Chief "Shameful"‏

http://www.medhelp.org/user_journals/show/47741?personal_page_id=1064

Epidemic Myalgic Encephalomyelitis: A Demand for Urgent Action and Accountability‏

http://www.medhelp.org/user_journals/show/91344?personal_page_id=1064

[greenmount]

William Reeves and his associates need to be removed from the CDC/CFS program and replaced with people with an understanding of CFIDS. Reeves WANTS to promote CFIDS as a psychonutjob illness and NOT a real, physical disease since his gravy train depends on Emory University Psych Department (where he is an adjunct even though he is NOT a psychiatrist) and with ABT Associates. Reeves and his British buddies have done and will continue to do everything in their power to portray CFIDS as a mental disorder or weakness and NOT a physical disease - it is in their financial best interests.
Email the head of CDC and demand that Reeves be removed and replaced. The damage that he and his CDC buddies have done to CFIDS research is CRIMINAL.

[kitonthemoon]

What interestig finding.  Thanks for the tip.  Now me go look, real quick.
Have a great day.