IACFS/ME statement, CFSAC meeting, Reeves CFS Definition Petition

Whittemore Peterson XMRV link with CFS study Media Round up: 14

WordPress Shortlink: http://wp.me/p5foE-2cS

IACFS/ME statement: New Study finds link between XMRV retrovirus and CFS/ME

IACFS/ME’s Recommendations:
CDC’s Five Year Strategic Plan for CFS Research

Date: October 21, 2009

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

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html

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:

http://www.wpinstitute.org/xmrv/xmrv_qa.html

Fred Friedberg, PhD
President
IACFS/ME

———————

Tom Kindlon  21 October 2008, via Co-Cure

Reeves Criteria Petition update: Marly Silverman (Pandora) to bring petition print-out to CFSAC meeting

Marly “Marla” C. Silverman, Founder of P.A.N.D.O.R.A. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc http://www.pandoranet.info) has been in touch to say that she will be bringing a print-out of the “entire petition” (i.e. the visible signatures and comments) to the CFSAC meeting at the end of October.

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.

Tom Kindlon

http://CFSdefinitionpetition.notlong.com
i.e.
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

The petition

We call on the Centers for Disease Control and Prevention (CDC) to stop using the “empirical” definition[1] (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[2]. However the prevalence rates suggest otherwise: the “empirical” definition gives a prevalence rate of 2.54% of the adult population[3] 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[6] found that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the empirical/Reeves definition.

References

[1] Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L, Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome – a clinically empirical approach to its definition and study. BMC Med. 2005 Dec 15;3:19. Link: http://www.biomedcentral.com/1741-7015/3/19

[2] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome; a comprehensive approach to its definition and study. Ann Int Med 1994, 121:953-959.

[3] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.

[4] Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003, 163:1530-1536.

[5] Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.

[6] Jason, LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease Control’s empirical chronic fatigue syndrome case definition. Journal of Disability Policy Studies 2008, doi:10.1177/1044207308325995.

Further reading:
Problems with the New CDC CFS Prevalence Estimates Leonard Jason, Ph.D., DePaul University
http://tinyurl.com/2qdgu4  i.e.
http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

———————

Prohealth

[Ed: Note: Dr David Bell will be presenting at the Thursday Session of the CFSAC (CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE) 29-20 October meeting at 3:30 p.m. and speaking on CFS and FII/MBP.  See http://wp.me/p5foE-2dr under Lectures and presentations.]

http://www.prohealth.com/library/showarticle.cfm?libid=14942

Dr. David Bell on XMRV Research: “Now We Can Get Down to Business”
by David S Bell, MD, FAAP
October 21, 2009

This information is reproduced with kind permission from the October 2009 issue of Dr. Bell’s free Lyndonville News e-newsletter. It was published shortly after research linking the “XMRV” retrovirus and ME/CFS went live in the journal Science on October 8.
______________________

Holy smokes! Just when I want to retire this comes along. How am I going to get any peace and quiet?

Here is the Lyndonville News coming out within a week of a paper being published, and already what I have to say is old news. Probably everyone reading this newsletter has been on the edge of their seats listening to NPR, CBS, Reuters, and so on. The CDC has already said that it isn’t going to pan out. It is my guess that the media coverage will intensify because this is really big news.

First of all, congratulations…

To Drs. Judy Mikovits, Vincent Lombardi, Robert Silverman, Dan Peterson and the rest of the authors. And a special congratulations to the Whittemore Family Foundation, and the Whittemore-Peterson Institute for putting this together. For many years ME/CFS has been limping along on complex science that points to mechanisms of illness that most physicians have ignored. Limped along with skeptical specialists, medical establishments, government agencies. Limped along despite attacks by disability companies. Now we can get down to business…

Full article here

 

Previous ME agenda Media Round ups

Round up 14: Whittemore Peterson XMRV link with CFS study Media update: 14: http://wp.me/p5foE-2cS  (you are here)

Revised MEA statement on retrovirus XMRV and ME/CFS (Version 2): http://wp.me/p5foE-2cD

Round up 13: NIH $1.6 Million award for ME/CFS Research for Drs. Mikovits & Kerr: http://wp.me/p5foE-2co 

Round up 12: XMRV Retrovirus Whittemore Peterson CFS study Media Round up 12: http://wp.me/p5foE-2c2

Round up 11: XMRV Retrovirus Whittemore Peterson CFS study Media Round up 11: http://wp.me/p5foE-2bB

Round up 10: Whittemore Peterson Institute XMRV retrovirus study link with CFS (Science journal):
http://wp.me/p5foE-2bk

Round up 9: Notice from Dr David Bell, Lyndonville News; Article by Paul R. Cheney MD, PhD:
http://wp.me/p5foE-2aQ

Round up 8: XMRV retrovirus study: Position statement from ME Association 14.10.09: http://wp.me/p5foE-2at

Round up 7: XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7: http://wp.me/p5foE-2aa

Round up 6: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study: Videos and audios: http://wp.me/p5foE-29L

Round up 5: Supporting Online Material for XMRV Chronic Fatigue Syndrome study: http://wp.me/p5foE-299

Round up 4: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study:
http://wp.me/p5foE-28F

Round up 3: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome retrovirus XMRV in the media: http://wp.me/p5foE-280

Round up 2: Science 9 October 2009: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 08.10.09: http://wp.me/p5foE-27v

Round up 1: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 09.10.09: http://wp.me/p5foE-272

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