How To Not Succeed Without Really Trying
By Robert Huntington
I was going to skip an issue of The National Forum and not write about The CFIDS Association of America (CAA) but they just keep giving me more fodder! I've already told you how they didn't fund any research for years and years, but told everybody how they've "already" funded "over $3.86 million" since 1987 when the CAA was actually trying to help patients. They just neglected to tell anybody that they funded squat in recent years! Maybe we helped shame them into beginning to fund research again, but they've only funded the same old, same old. O.K. Old story. But they went and did it again! So here I am, climbing up on my soapbox when I thought I would give it-and you-- a rest.
It's no secret the CAA once funded Dr. Kenny L. DeMeirleir a few years back. When the National CFIDS Foundation (NCF) announced, in the last issue, that DeMeirleir discovered a huge mechanism in ME/CFIDS and neglected to publish on this (despite him being the co-editor of The Journal of Chronic Fatigue Syndrome), was the CAA surprised? Angry? Both? Enough to change their research grant program? Well, change it they did! And to the detriment of the patient community which angered me so much that I had to drag out the old soapbox again.
The CAA now has a cap on research. If a request for research, including indirect costs, are granted, old "existing preliminary data" has a "funding cap of $80,000." When it comes to "novel, untested theories" that may actually discover what this illness is and, in their own words, "conquer chronic fatigue syndrome," they have a cap of a mere $40,000! That's the maximum! So if anybody comes up with something really novel…such as the ciguatera epitope being involved in this illness (research that was actually funded, of course, by the NCF), only $40,000 could go into the study! Who can work on something like this for so little? Yet K. Kimberly Kenney, the President and CEO of the CAA, complained in a recent column that "Federal funding for CFIDS stands at a meager $20 million for the most recent spending year." Well, does it really matter if the federal funding is $20 million or $40 billion when the CDC spent a decade on funding a prevalence study and came up with nada? Or the NIH gives out grants to study CBT and exercise?
Wait, there's more! If you're awarded a small sum for research in January, you don't get any money for months. And there's more! The best is yet to come: if you patent something that you were granted a small amount of funding for from the CAA, the CAA gets a piece of the action: "The Association shall participate in income and other economic benefits derived…" Wow, talk about greed!&nnbsp; Talk about putting the patient interest dead last! Talk about being more interested in money than the end result!
Currently, the 2003 research grants approved by the CAA went to Theodore C. Friedman, M.D., Ph.D. of Drew University in Los Angeles to look at "Cerebral Blood Flow and Orthostasis in CFS." Well, the first paper about this same old, same old was published well over a decade ago! Don't quote me, but I believe it was Dr. Ismael Mena* from California who found that, indeed, blood flow was restricted in the brain and you saw proof of this in SPECT scans. They're also funding "The Interaction between the Cytokine Immune System and Autonomic Nervous system in Chronic Fatigue" for a study in Haifa, Israel. Oops…wouldn't the cytokine problem and the autonomic nervous system problems, first shown by Nancy Klimas, M.D. in the early 1990's, be the result of a depletion of STAT-1 alpha? And isn't that work that the CAA funded for DeMeirleir? And isn't that work now being redone so that it can be properly published by well-known and well regarded researchers in the field and funded by the NCF? And didn't both of these same old, same old research funding projects cost the CAA over $75,000 a piece? I was just told that the NCF is now fundraising for what they believe to be the most important research they've ever funded and they know it's going to cost more than the cap that the CAA has put upon research.
Well, I don't have to beleaguer the point but you can understand why I had to dust off the old soapbox. If you don't see that old soapbox in the next issue, we'll both be happier!
[Ed. Note: * To be fair to our former medical director who is now retired, it was Dr. Jay A. Goldstein who first began reporting on these pilot studies on brain scans along with Drs. Mena and Lottenberg. In fact, Dr. Goldstein could tell the symptoms of some patients before meeting them by looking at their scan. Goldstein also found that a form of attention deficit disorder was fairly common in his patients which he diagnosed with a visual evoked response (VER) yet the auditory response was more frequently abnormal. When Dr. Mena did not see an abnormality, he asked the patient to run around the building before trying again. Indeed, the abnormality then showed up, which illustrated early on that exercise, graded or not, is dangerous for ME patients. Graded Exercise Therapy is suggested by a continuing education program by the CAA that is paid for by the Centers for Disease and Prevention.]
The National CFIDS Foundation* 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606