CDC’s Five Year Strategic Plan for CFS Research
IACFS/ME’s Recommendations:
New Study finds link between XMRV retrovirus and CFS/ME
An article published online (10/8/09) in the journal Science reported that
68 of 101 patients with CFS, or 67 percent, were infected with an infectious
virus, xenotropic murine leukemia virus-related virus, or XMRV. By contrast,
only 3.7 percent of 218 healthy people were infected. 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, insert themselves
into their hosts’ genetic material, and stay for life.
These new findings raise the possibility that XMRV could be a possible cause
of the illness or an effect of altered immune function in CFS patients who
are more susceptible to these viruses. More studies are needed to explain
the occurrence of XMRV in the genetic material of CFS patients.
The research was carried out by principal investigator Judy Mikovits and
colleagues from the Whittemore Peterson Institute, the National Cancer
Institute, and the Cleveland Clinic in the US.
This new finding about the XMRV virus is an exciting development, although
its significance has yet to be determined. First, the study needs to be
replicated in well-defined CFS samples in the community and in physician’s
offices. Prospective studies (following patients over time) are essential
to determine if the virus is contributing to the cause, persistence, and/or
severity of the illness.
The good news is that if XMRV is linked to CFS, there are many antiviral
drugs that have already been safety tested in H.I.V. that may inhibit XMRV
replication. Thus studies to determine the safety and efficacy of these
antiviral agents for CFS/ME patients could be designed and executed in short
order.
Important Meeting of the CFS Advisory Committee on Oct. 29-30 in Washington, DC
The CFS Advisory Committee makes recommendations to the Secretary of Health
and Human Services regarding government-based CFS research, funding and
programs. This is a critical meeting because the future of $25 million in
public funding for CFS research at the Centers for Disease Control will be
discussed. IACFS/ME wants these funds to be spent on cutting edge biomedical
research leading to objective diagnosis and treatment of CFS. We also want
CFS to become a public health priority so that issues of stigma and the
absence of good medical care are addressed.
The new CFS retroviral study on XMRV in the top tier journal Science shows
what can be done to advance the medical research. But this is only a first
step. Without follow-up, the momentum we now have will be lost. Only with
broad based support from the professional and patient communities will we
have a voice in how federal funds for CFS research are spent.
What we need is strong attendance at the CFSAC meeting. If we pack the
house (we have to fill only 50 seats), that will show that we care about
this illness and support all appropriate biomedical research and public
policy initiatives that legitimize CFS. If you can attend for even 2 hours
that would be helpful.
For an informative Q and A about the study, click on the link below:
Fred Friedberg, PhD
CDC’s Five Year Strategic Plan for CFS Research
Date: October 21, 2009
http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html
http://www.wpinstitute.org/xmrv/xmrv_qa.html
President
IACFS/ME