The battle over CFS/ME/GWI continues to heat up.
The Wall Street Journal is tracking the issue of XMRV retrovirus research. I told all the gulf war veterans to hold on and I meant it this is going to be a long struggle. The civilians with Chronic Fatigue/ME are in full battle mode. Yes we have at least 2 gulf war illness researchers tracking this issue but no answers yet.
The struggle to replicate the initial findings of a new retrovirus- XMRV- published in 2009 are in full international science realm. Hopefully, the gulf war veterans are vested and keeping track by reading.
Yes we need to have gulf war veterans tested but personally I want the WPI in Nevada to be validated ASAP! No insurance company will phony up to cover cost when this is stuck in research. WE as well as civilians suffering with chronic fatigue syndrome/ME need answers! The civilians have been involved for 25 years and gulf war veterans 20 years.
What I can reccommend to gulf war veterans is to keep reading and tune into the webnairs! I will keep you all as updated as I can! WE can also all keep writing our elected Representatives and Senators to increase CDMRP funding for Gulf War illness and let them know we want answers just like the civilians with CFS. WE want diagnostic testing and treatment that gets to real answers for us all! But for now I will post the Wall Street Journal Blog on the issue and thank WSJ’s Amy Dockser Marcus for reporting on the issue and encourage her to keep it up!!:
WSJ’s blog on health and the business of health.
Potential XMRV-Chronic Fatigue Syndrome Link Not Easy to Tease Out
By Amy Dockser Marcus
The controversy surrounding XMRV, a virus that has been linked to chronic-fatigue syndrome and prostate cancer, has been heating up recently.
Earlier this month, CDC researchers published a paper in Retrovirology that reported the absence of XMRV in either the CFS patients studied or healthy controls. A much-anticipated study by researchers from the FDA and NIH supposedly reached a different conclusion, finding the virus in the blood of CFS patients. It’s expected to run in the journal PNAS but has yet to be published.
So lots of people are waiting for answers — patients anxious to find out whether their disease is linked to XMRV, scientists interested in learning more about what is only the third known human retrovirus and public health officials trying to determine whether XMRV could affect the nation’s blood supply.
And that wait may not be a short one, say experts participating in a webinar today sponsored by the advocacy group CFIDS Association of America. Vincent Racaniello, a professor of microbiology and immunology at Columbia University, said that there’s a lot of work yet to be done in patients in order to answer the key questions surrounding the issue, and the full dimensions of the XMRV story will take time to understand.
“We can learn a lot from history,” he said on the webinar, noting that it took 15 years from the time clusters of AIDS patients were identified to the development of effective therapies. Racaniello doesn’t study XMRV in the lab, but he blogs about the controversy.
In a follow-up chat with the Health Blog, Racaniello said that so far, all the published studies have been done in relatively small numbers of patients — 50 or 100 people.
What’s needed to really get answers, he says, is a 500- or 1,000-person, federally funded study conducted at more than one research site. Ideally participants would be existing CFS patients who’d be available to be interviewed for detailed medical and case histories, and who could give fresh blood samples. And centers would use uniform definitions of CFS and lab methods, he said.
Another webinar participant, Lucinda Bateman, an internist who evaluates CFS patients at her Salt Lake City clinic, says that up until now there’s been “no consistency in the way we diagnose and treat patients” with CFS. Potential treatments for XMRV infection exist, she says, but there are plenty of questions about which are safe and effective — and sorting all that out will take (you guessed it!) — time.
Still, that’s not to say that the scientific process — and the debate — hasn’t been fruitful, she says. Even negative studies help shape the direction of future research, and the differing results of the published studies have led to greater scrutiny of the way CFS is defined.
Interest in CFS is growing in major academic centers and attracting more scientists. And more people are donating money to help fund CFS research, she adds — which eventually should lead to the kinds of trials that Racaniello and others want to see done.
Comments (5 of 33)
4:04 pm July 16, 2010
.Professor Vincent Racaniello said that it took 15 years from the time cluster outbreaks of AIDS were identified until effective treatments were found. Cluster outbreaks of Chronic Fatigue Syndrome were identified in Incline Village, Nevada, farming towns in upstate New York and Nevada, and in Charlotte, North Carolina in 1986. Since it’s already been about 25 years, I’d say we’re overdue for some answers and some treatments.
Thanks to Amy Marcus and the WSJ for your continuing coverage of this story. It’s like watching a crime novel plot unfold before your eyes.
3:13 pm July 16, 2010
.Thank-you again for your coverage of XMRV and ME/CFS – please contiue.
-Why can’t the FDA-NIH paper, confiiming the WPI publication in Science, be published as is.? All the papers published that refute the WPI findings are quite flawed, and they were published [and critiqued]. Why must a paper confiming the findings be held to a higher standard? Publish it and let the debate begin from there.
-Unchallenged negative studies are creating a media drone of the WPI study being just another dead end. Boring, bye-bye. No more print space or air time for ME/CFS
As a result of the WPI XMRV article in Science:
-The safety of the nations blood supply became a concern and FDA & NIH were tasked by DHHS to study the WPI XMRV findings and report primarily on blood safety issues. We await their findings.
-CDC was tasked with nothing – as far as I know
-Dr. Reeves, head of the ME/CFS Unit. was removed from his position and placed outside CFS- and yet
-Dr. Reeves is a co-author of the published CDC article which refutes the WPI findings – the untasked one ??
-CDC, under, the same Dr. Reeves, published studies that link CFS to child abuse – as though it’s somehow logical that hundreds of people in two small towns, Lyndoville NY  and Incline Village, NV  and other cluster outbreaks all experienced a resurfacing of sexual abuse at the same time, with the very same symptoms, symptom clusters never before seen by their doctors, school children to the elderly. What absurdity was allowed to be studied or published. There was no outcry then, but that study didn’t involve the safety of the blood supply. Left as is, it’s now in doctors’ minds, and ME/CFS is all in the patients’ minds.
-And now, the FDA-NIH study can’t be published, we need more work, to be certian, standardize things.
-Racaniello saind, “We can learn a lot from history,” — “It took 15 years from the time clusters of AIDS patients were identified to the development of effective therapies”. Where has he been the past decades? ITS TAKEN CDC AND THE SCIENTIFIC COMMUNITY 26 YEARS TO GET NOWHERE WITH THE REAL ILLNESS OF ME/CFS – When do we begin the 15 year countdown? I started in 1984, when I became ill.
-He also listed the – a long and time consuming list of -”things we must do to get meaningful research”. .-as if that was reason not to publish the FDA-NIH study.
The long and twisted history of CDC and the governement’s involvement in ME/CFS is horrendous and should be investigated. The only reason we [those who have ME/CFS] have a shot at attention and progress now, is the issue of the safety of the blood supply. Without that, I doubt FDA and NIH would have been tasked to do a study on the WPI findings. If this opportunity to move ME/CFS into the bio-medical arena is squandered, we’ll all be catagorized as having a whimpy mental health syndrome of “fatigue, pain and general unwellness, not attributed to a medical disease” for decades more, I suspect. -You don’t think so?
While the scientific community may be on the verge of finding biological markers for ME/CFS , the psychiatric community is in the process of revising its Diagnostic and Statistical Manual of Mental Disorders (DSM-V), to include CFS, or CDC’s watered down symptoms of CFS, in a NEW condition called Complex Somatic Symptom Disorder (CSSD). If they prevail, many seriously ill people will be referred to a mental health provider, who will offer 1) Cognitive Behavior Therapy and 2) Graded Exercise. Short, cheap and closed ended. Good for health and disabilities insurance companies and SSI and…. A disaster for the afflicted.
I think it’s all about money. I can’t remember who expressed this, but I’ll put it out there anyway. It’s from the 1980s – “We [the government and nation] just can’t afford another AIDS type epidemic.”
What trumps money? Public panic over the safety of the blood supply? I hope so. It’s now or never.
Thank you again, Margaret
2:21 pm July 16, 2010
.Thanks again, Ms. Marcus. The OP that stated that this story is a career maker is correct. The first investigative reporter that cracks this case and brings it to the public and government forum in a visible fashion should be famous and rich.
Too bad those of us with CFS or ME are just too sick to do it ourselves.
Might I request that you also write about the KNOWN subset of diseases that ME and CFS cause, such as Postural Orthostatic Tachycardia Syndrome, which CFS experts such as Dr. Charles Lapp and Dr. Nancy Klimas state is found in 50-70% of all CFS and ME patients? This condition, which has RECOGNIZED testing to prove it is real, is life threatening and totally disabling, as people like myself often pass out every time we stand up from this condition.
The CDC was forced to add orthostatic blood pressure conditions as part of the CFS ME definition in recent years. Again, it can easily be PROVEN by tilt table testing and can kill. But most articles and doctors have no idea it is a common CFS ME complication because we NEED MORE PUBLICITY. Notice that this condition is never discussed in any argument or article that relies on CDC information.
Thank you WSJ for letting the public know the score. More articles, please.
And Ms. Marcus, please stay with us as the XMRV issues keeps blowing up in our faces, thanks to the con artists at the CDC. Considering that over a decade ago they illegally moved CFS research money to other purposes, I think con artist is appropriate.
2:01 pm July 16, 2010
Carlos Gonzalez wrote:
.I think is really not acceptable that FDA and NIH choose not to further comment on the fact that CDC negative study was published, while their positive study was not. I think they owe us an explanation for any delay on this publication, because it was already approved for its publication, and if there is a conflict with CDC, then they should have hold both of them, but not only the one that is in conflict of their own interest!
Have a look on the whole story: http://ireport.cnn.com/docs/DOC-469366
1:41 pm July 16, 2010
john d wrote:
.New Documentary Film being made: “What About ME?” (great way to have an introduction to what the illness is about and the politics behind it for those who don’t know).
Additional Trailers: http://www.whataboutme.biz/index.html
Blog on the Film: http://whataboutmefilm.blogspot.com/
Here is a speech about it by a patient advocate (her story is also on the website): http://www.ahmf.org/forgetmenot.html
Denise has been active in research and advocacy in the areas of Gulf War Illness and Agent Orange.
Denise has testified before congress many times, has been interviewed nationally and internationally and is an outspoken advocate for Americas veterans.
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