|
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
|
