In this story we desperate patients whine and importune the scientific community, demanding that they put carts before horses and give us a cure now, but research it later. The wise scientists sigh that while they understand our concern, we're actually impeding progress by disturbing them while they work in their ivory towers in the only reasonable way: slowly and painstakingly, making certain that they won't endanger us. We wouldn't want to take a drug that wasn't proven safe, would we?
Then there's the third figure: between the Sober Scientists and the Impatient Patients stands the Rogue Researcher. She understands the patients and we adore her. We take up all her lab time with our hero-worship and tearful phone calls, but we do that because she's the only one who seems to really care. She has gone out on a limb for us, trying to push her exciting new Theory X past the Reasonable Reviewers and Dauntless Doubters in the community of Sober Scientists.
When a scientific paper is published which seems to confirm Theory X, the Rogue Researcher quickly claims vindication, but when many more papers are more swiftly published which call Theory X into question she is even swifter to discredit them.
Those pesky Impatient Patients, meanwhile, refuse to see how much progress science is making in spite of an almost complete lack of funding.
It's a fascinating story, full of heroes, villains, and victims, and you can choose for yourself which is which. But it's a lie.
The true story can be seen in part right here: http://mcwpa.org/resources/research-funding-comparison/
Thanks to the ME/CFS Worldwide Patient Alliance for the easy-to-follow chart. It shows, clearly, how woefully underfunded research is for ME/CFS in the US as compared to some other neuroimmune diseases.
Take NIH's 2012 budget for CFS versus Lyme, for example. (CFS is the only name under which the disease receives research funding in the US; the name is a separate issue and since we are discussing US government funding here I'll call it what they call it.)
There are nearly 7 times more people suffering from CFS than from Lyme, but Lyme receives more than 4 times more research funding.
But why look only at CFS versus Lyme? There are plenty of patients suffering from both, or even suffering from one but misdiagnosed with the other. We need to see more research done on both those disease. And anyway, both are in the little leagues compared to the Big Neuroimmune Disease.
My researching brain is not what it once was but I've done my best to read the CDC's 2009 budget request summary here http://www.cdc.gov/fmo/PDFs/FY09budgetreqsummary.pdf
It looks to me like with an estimated near-equal number of sufferers, the CDC allotted over 200 times more money to AIDS than to CFS.
Now, maybe you think AIDS is more serious. But CFS kills as surely as AIDS does. It even kills in the same way that AIDS does: not directly but through secondary diseases such as rare cancers and heart failure.
The difference is that CFS kills more slowly. Instead of getting sick and either getting treatment or getting dead, CFS victims get sick and stay sick for decades: sick and disabled, drawing on government disability funds and social services. Taking a long time to die, we cost a whole lot more in the long run.
Well then, do we suffer less? Is the spending lower because we just aren't really that sick? More than one doctor has publicly said no, ME or CFS patients actually are worse off:
“… I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”
-Dr. Nancy Klimas, HIV and CFS Researcher and Clinician - as quoted in the NY Times Oct. 15, 2009
So there's really no reason for research funding to be so low for ME (or as the funding bodies insist on calling it, in this country, CFS). But the bottom line is, there's more than 200 times more money being offered for the study of AIDS, even though the patients already have treatments, the pathogen and method of transmission is already known and we already know how to prevent and to test for the disease.
ME patients have no proven treatments. The cause of the disease is still in question. Tests are being developed but meanwhile, not knowing how it's spread, we don't know how to prevent ME/cfs. So of course anyone can see that we ought to be spending more money at this point to research, and prevent the spread of, ME (or cfs).
Is it just that researchers aren't really as interested in boring old CFS as they are in exciting, glamorous AIDS? No. The glamor is where the dollars are. The motivation is where the dollars are. Even for researchers who have a strong interest in CFS research, the bottom line is, the ability to proceed is where the dollars are. Nobody can research in a vacuum, or without a lab and a paycheck. As long as there's next to no spending on CFS, there will be next to no research. That's all.
As for the Rogue Researcher part of the story, it's true that sometimes we're fortunate enough to have a researcher and/or clinician come along who cares so much about the plight of sick people that they put extra passion and commitment into their work. Those are the sorts of scientists about whom hero movies get made sometimes, and what is wrong with being a hero? Why the effort to portray the caring and committed as looking ridiculous to other scientists and being bothered by the very patients they're helping? The most committed and caring researchers need exactly the same financial support that a cold and uncaring researcher would require to carry out scientific inquiry.
So what researchers want is the same thing patients want. We share a common goal: a reasonable budget allotment for solid science to examine the biomedical workings of ME or, if the funding agencies prefer, CFS.
That's the real story. Researchers and patients require more funding for ME/cfs research. If there is an urgency in our demands, it's not because we want to push science through too fast and end up with shoddy results. It's because strides are being made and should be followed up. Studies show the effects of exercise on cytokines, the presence of unusual proteins in spinal fluid, neurological damage evident in autopsies and yes, retroviral infection in a majority of well-defined patients. These findings should all be followed up with more research. Other avenues of biomedical inquiry should be pursued. What little funding there is should not be wasted in repeating dead-end psychological studies. Funding should be increased and allocated to serious neuorimmune study.
The urgency is also because more people are getting sick every day. To help those sick, and to keep healthy people well, patients and researchers alike demand fair funding for the study of this devastating disease.