CDC's Switzer and Reeves:  XMRV  Not Found
CDC's CFS Samples or Healthy Controls

  WSJ:  Coordinated Research Underway

  Nevada Takes Center Stage
with State of Art Research Center

CFS Central First to the Punch :
  NIH/FDA Breakthrough 

 

 Chronic Fatigue Syndrome (CFS) News   CFS Features
   MLV Sequences Founds In CFS Samples By NIH/FDA

Science Magazine:  Scientific Interest in CFS/Viral Link Grows:   Alter Confident in Results

Wall Street Journal on "Rare Move":  Senior Health Department Officials Slam Door On Effort to Publish Findings

Renowned Retrovirilogists Fire Back at
 Whispering Campaign:  "Just a Matter of Time"


Canada Chooses to Wait It Out the Safe Side:
American Agencies Continue to Allow CFS Blood Donations


Wall Street Journal:   Federal Panel to Assess Potential
Risk to Blood Supply from CFS/XMRV


British Medical Journal: XMRV does
 "not play a substantial role"


Lyndonville Clinician, Dr. David Bell, Urges Community to Fund WPI:   "Profession I Love has Failed Miserably" 

Bold Move -  Whittemore Institute Responds to BMJ Editorial

Wall Street Journal  -- Virus May Play Role in CFS

Seabiscuit Author:  "Happy" but "Careful"

Study Stimulates Interest in CFS and XMRV

Reaction:  "At Last"

New Study:   CDC's Revised Research       Definition  Flawed

Whittemore Institute Making Strides

Private Funding and CFS Research:  A Growing Number of Options 

Laura Hillenbrand's Defining Moment !

Jason on CFS:  New York Times

DePaul's Chronic Illness Initiative

Brave Hearts:  Author's Compelling Story

A Disease Like No Other:   The Personal Costs of CFS


   
  It's Out:  FDA/NIH Confirm Link to CFS and Retrovirus  

The NIH and FDA, led by a world-reknowned virologist, released a study confirming an earlier link between a retrovirus and chronic fatigue syndrome.  


     OP/ED:   What Kind of Freedom?

Currently, focus is on winning a longstanding war against a devastating disease.   But who is asking: what kind of freedom is won?  



"Rare Move" to Halt Publication of Research Findings:  Did HHS Officials Make the Right Call?

HHS Officials halted publication of two conflicting studies, interjecting themselves into a growing scientific battle over XMRV and CFS.   But is there more to this decision than a search for consensus?  


    

    Common Language Spoken At CDC's Stakeholder's Meeting In Atlanta

 
  Short Takes 

August 2010

The Alter Study Confirms CFS/ Retroviral Link

 

Though CDC officials raised concerns about a FDA/NIH study, leading to the study being delayed, the study has finally been published.    As expected, the study confirms the earlier findings by the Whittemore Peterson Instutite of a link between CFS and XRMV.   However, the NIH/FDA team found three mutations of XRMV in the book of a small group of CFS patients.

  Public reaction and media attention on the findings has been sparse, given the possible implication of the findings.    General opinion on many discussion groups has been that the findings are being downplayed by federal agencies and the media.

Whittemore-Peterson Institute Opens  -- Nevada Newsmakers

 

The Whittemore-Peterson Institute has opened!   The grand-opening of the center is a much-anticipated moment that created a great deal of excitement and support from around the world.

    Annette and Andrea Whittemore spoke with Sam Shad of Nevada Newsmakers about the rapid progress that is being made on understanding the causes and finding treatments for chronic fatigue syndrome.  

The video of the interview can be seen on the Video Page.

 

 

     Our Voice, Our Message, Our Lives (ME/CFS Awareness Campaign)

        Some extraordinary opportunities are going to be available in the coming weeks, and an effort from patients to capitalize on those opportunities is underway in the form of the awareness campaign.  The campaign will purchase professionally-scripted, focused ads in the Washington Post in an effort to encourage coverage and funding for XMRV treatment and research, better disability policies, and reform.   Ads must be simple and credible to gain public attention (the public turns off what takes too much effort), but they also have to appear at opportune times.   Now is that time.

The effort reminds me of an article series I wrote called "Media Savvy".    In that article, I said: "A media savvy leader will invest and lay groundwork before opportunities present themselves. This means being prepared for upcoming opportunities."     Apparently, someone was listening. 

  Hopefully, the effort goes well.   Donations can be made at the link above.   If anyone is interested, "The Media Savvy" articles series can be read on the articles page.   I still get comments on the media savvy series, despite having penned it some time ago.

Media Savvy 1

Media Savvy 2

Media Savvy 3

   

CDC Study Out:   Fails to Find XMRV
 in CDC's CFS Registry or Healthy Controls

On July 1st, the CDC finally released a study that has been nearly six months in the waiting.  As promised by Dr. William Reeves shortly after an original XRMV study, the CDC CFS research program failed to find XMRV.   The CDC provides the fourth study to fail to find XMRV.   In July, the Wall Street Journal reported that officials close the chronic fatigue syndrome program at the CDC were among those who requested senior leadership at the department of health and human services block the publication of a study that contradicted their agency's findings on CFS.

Interestingly, the CDC also failed to find XMRV in healthy controls as well.   The CDC or the CFS research team did not address whether their findings suggest that XMRV does not exist in the US population.    The samples sizes were very small (around 50), and the CDC concentrated on working with CFS samples who met a broader "revised" definition and had a gradual onset.

The CFS community has not reacted very strongly to the findings.  In fact, a belief that the CDC's team would not get the same results as the original paper that appeared in the Journal of Science in October 2009 appear to be built in to expectations.    


Kitei Offers Credible Analysis

For those of you looking for a new voice in CFS advocacy, peruse the credible reporting of Mindy Kitei.   Kitei has a solid track record as a journalist covering chronic fatigue syndrome. Those knowledgeable about CFS history may recall Kitei's article for the early 1990's on Ampligen.  

  Ms. Kitei has also taught journalism at Temple University, a university which has its own most unique history with CFS.   Though her site just arrived on the scene, Ms. Kitei's early articles have been credible and incredibly informative.  She has set high standards in her work thus far.  Check her coverage of CFS out at the link below: 

http://www.cfscentral.com/


 

 

                       Best wishes to all,

                                        Craig Maupin  

 

 
 Series >   Research   Personal Stories
Full list of Series on the Archives Page

Advocacy Ruts 
1 2 3 4 5

A Disease Like No Other
1 2 3 4 5

Shaky Foundation
1 2 3 4 5

CFS at the NIH
1 2 3 4 5

Interview with Dr. Vivian Pinn, Director of ORWH at the NIH

WSJ "Rare Move":  Senior Health Department Officials
Slam Door On Effort to Publish Findings

Reeves Tenure at the CDC CFS Research Program:  Rich History, Poor Past

Reeve's Conclusions - The CDC's Disappointing Day

Science Magazine criticizes CDC's "pathway-specific" approach

Author Escapes Illness with Stirring Seabiscuit

Hillenbrand Discusses  CFS

Skloot's essays, poems make waves


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