Thursday, September 15, 2011

Hutchins Family Foundation is providing “over $10 million” to hunt for the causes of ME/CFS

By Amy Dockser Marcus, SEPTEMBER 15, 2011, WSJ's blog on health:

Venture philanthropy — the model used to accelerate research and drug development in diseases such as multiple myeloma and cystic fibrosis — is now being applied to a new arena: chronic fatigue syndrome.

Scott A. Carlson, executive director of the newly launched Chronic Fatigue Initiative, tells the Health Blog the Hutchins Family Foundation is providing “over $10 million” in funding for projects through 2014, with the possibility of more depending on the findings.

The initiative wants to fund projects that hunt for the causes of the illness, the creation of a central bio-bank for blood and other biological specimens and the development of a cohort of 200 patients and 200 healthy controls for studies.

The concept that large sums of private money can be used to drive specific scientific projects in an overlooked disease has proven successful in the past. The Cystic Fibrosis Foundation, the Multiple Myeloma Research Foundation and the Myelin Repair Foundation are all high-profile examples that have used venture philanthropy to jump-start research projects and drug development in diseases that previously languished because they were less common and therefore didn’t attract pharmaceutical company or academic research interest.

Chronic fatigue syndrome affects more than a million Americans according to CDC estimates, but has had trouble attracting significant funding from either government or private resources. The cause is not known and there is no diagnostic test; diagnosis is usually made by excluding other conditions. There is often a social stigma too, says Carlson, since CFS is still “a disease that hadn’t been considered a disease in many places,” he says.

The first group of funded projects includes the enrollment of 200 CFS patients at different sites around the country. Researchers will use “very specific criteria to ensure we have representation of many of the aspects of CFS that may increase chances of finding a pathogen if it is still present in blood samples or other samples we will be acquiring,’’ says Mady Hornig of Columbia University, who is a co-director of the pathogen discovery piece.

In addition to blood,
the researchers are collecting patients’ saliva, tears, urine — even a rectal swab. “You are trying to get a sense of what is different about them,” says Nancy Klimas of the University of Miami, who is in charge of the cohort recruitment project.

Samples will be stored in a central bio-bank, along with material from matched healthy controls, who are being recruited with help from the Red Cross.

Another funded project involves a large epidemiological study using data from over 250,000 people who are part of three long-running Harvard School of Public Health studies, including two groups of female nurses who have been providing information and health data for decades.

Alberto Ascherio, a Harvard professor who is leading this project, says researchers will try to identify people who have chronic fatigue syndrome and then study biological samples in addition to lifestyle, environmental, and other information to get a better estimate on the prevalence of the disease and its risk factors.

The new venture philanthropy approach comes at a time when the most promising recent lead, a possible link between CFS and the retrovirus XMRV, has come under serious fire. The editors of Science, where the 2009 finding was published, have asked the authors to retract their paper because of concerns about the validity of the findings. The authors have refused.

Ironically, one of the key players in the new venture philanthropy effort has a lead role in the effort to determine if XMRV is linked to CFS. Virus hunter Ian Lipkin of Columbia, who is co-leading the pathogen discovery effort as part of the Chronic Fatigue Initiative, was appointed by NIH to direct a major study to determine whether or not the XMRV link exists. (Lipkin tells the Health Blog that the NIH study has not yet started collecting samples from patients and healthy controls but hopes to get underway soon.)

Some of the same sites participating in the NIH’s XMRV study will also help enroll patients in the Chronic Fatigue Initiative’s bio-bank and cohort recruitment project. Once samples start coming in to the bio-bank, Lipkin says they plan to do an initial search for 20-30 infectious agents implicated in the past to be connected to CFS, including the herpes and Epstein-Barr viruses.

XMRV won’t be one of them, Lipkin says. “This should not be taken as bias one way or another,” he adds. “Given we are already doing that in another context, it doesn’t make sense to invest twice.”


Anonymous said...

So they are willing to look into 20-30 previously implicated infections (& as far as I know all have been proved not to be linked) except XMRV but won't be looking into that one although no true replication study has taken place. How about DeFreitas virus will they revisit that one, I wonder???? I expect they won't because that was HGRV
Meanwhile the Lipkin study has still not started, was/is the Lipkin study a smoke screen, which is/was never intended to start or finish are they biding their time to come up with something so as cancel the Lipkin study.
Is this a real hunt for ME/CFS or another political stance to appear or pretend but ultimately to bury XMRV.
Time will tell!!!!


In my view, if CFS/ME patients truly want billions of dollars of funding to be allocated to studying their illness, they need to first demand of their government officials' that our medical establishment (NIH/NIAID) conduct a "Re-Appraisal of AIDS."

I am not suggesting that CFS is AIDS, as I know most people don't like sound of the 'scarlet letter.' I am stating is that AIDS patients are simply more CFS patients, which as CFS patients' we already know it's not caused by HIV.

Perfectly healthy HIV+ people get billions of dollars in research and service funding and they are not even sick. How does that make any sense to anyone? CFS/ME patients are the ones who are immunodeficient. Why can't people see that the medical establishment simply has their paradigms (CFS, HIV) backwards?

ME + CFS + AIDS = 1 catastrophic epidemic (not caused by HIV)

7 Step Plan to resolving our World's catastrophic public health disaster:

1. Demand research funding parity for CFS with AIDS.
2. Suggest that CFS & AIDS be researched together by scientists rather than as separate entities.
3. Urge the CDC to move their AIDS division under the CFS umbrella so they research all the infections that AIDS and CFS have in common.
4. Urge that AIDS organizations (like Amfar) include CFS under their umbrellas so that CFS advocates don't have to reinvent the wheel.
5. Demand that the White House, Fauci and the Director of NIH make a public statement that (just from what we know today) in terms of the immune dysfunction and human suffering, CFS is just as serious a public health problem as AIDS.
6. Request that an annual international joint CFS & AIDS conference be held by the World Health Organization.
7. Suggest that next December 1st be declared the first "World AIDS/CFS Day."

I stopped fighting for myself a long time ago. My fight is for humanity.

I measure success based on how many billions of dollars backs my government's stale ("it's caused by HIV.") rhetoric.


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