Crowdfunding for ME/CFS Research

If you all have been reading my blogs, you must have read some about ME (myalgic encephalomyelitis).  My daughter has this debilitating chronic illness.  And, of course, I try to keep up with as much research as I can, and ways in which patients (and doctors, if they’ve even heard of it), are trying to “manage” their illness; in different ways, and with more success, than others.  And my daughter is doing her best in “keeping up” and advocating as much as possible.

I came across another blog by David Tuller.  David is a journalist who specializes in reporting about science and medicine.  He graduated from the Berkeley Graduate School of Journalism, and has articles published in the New York Times and other prestigious journals. He speaks about the disregard our government has towards this terrible, debilitating disease.  Between the pharmaceutical industry, medical insurance industry, psychiatrists and politics, ME patients are caught between “several rocks and hard places.”

In this particular blog, he talks about a scientific conference at Stanford, as well as the discussions prior to the actual meeting:

Crowdfunding For ME/CFS Research

by David Tuller, Dr.ph.  |  

In late March, hundreds of scientists, clinicians and patients gathered for a four-day scientific conference on the illness widely known as chronic fatigue syndrome but more appropriately called myalgic encephalomyelitis. (The scientific name means “painful inflammation of the brain and spinal cord;” most people these days refer to the illness as ME/CFS.)

Sunshinebright’s comment:  I was so glad to finally find an easy-to-understand definition of what “myalgic encephalomyelitis” means!

At the conference and a pre-conference gathering at Stanford, which I covered for the website BuzzFeed, attendees heard from researchers who are finding all sorts of physiological abnormalities in people with the illness. While efforts to find a single cause have not produced results, evidence presented during the meetings clearly demonstrated that something has caused patients’ immune systems to go into a state of hyper-activation. The resulting inflammation is likely to be the cause of many of the myriad symptoms that can characterize the illness.

The conference was organized by the International Association of CFS/ME, the main scientific organization related to the illness. The pre-conference meeting at Stanford provided researchers from the university the opportunity to present their own ongoing work related to immune dysfunction.

Patients were delighted by some of the research findings but disheartened by the government’s continued lack of funding support. In recent years, the National Institutes of Health (NIH) has spent only $5 million on the illness, while other conditions with fewer patients but more public recognition have received much more federal support. The scientists, too, are struggling to cope with the limited resources available, and many grumbled at what they view as the government’s long-standing neglect of ME/CFS.

One top researcher, Ian Lipkin, M.D., director of Columbia University’s Center for Infection and Immunity in New York City, has even taken the highly unusual step (for an academic researcher) of resorting to crowdfunding in an attempt to raise more than $1 million in donations for his research into infectious triggers of ME/CFS. While NIH recently granted Dr. Lipkin more than $30 million for translational research, it has refused his request for more funding for his ME/CFS efforts.

 

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