chronic fatigue syndrome, cfs, chronic fatigue immune dysfunction, cfids, myalgic encephalopathy, fibromyalgia, fms, Forum,  myalgic encephal, m.e., low blood volume, neurotoxin, orthostatic intolerance, multiple chemical sensitiv, National CFIDS Foundation, chronic fatigue, NCF Forum newsletter, chronic illness

No Illness Here (N.I.H.)

By Robert Huntington

     After soundly bashing the Centers for Disease Control and Prevention in the last issue, who should be known as the Centers for Disease Denial, I didn't want to leave out the prestigeous National Institutes of Health (NIH) who should be more accurately known as No Illness Here (NIH).  No, they didn't steal money from the coffers for "Chronic Fatigue Syndrome" and spend it on golf outings and trips abroad along with other illnesses that had nothing to do with ME/CFIDS, but they haven't done a whole lot better. 

     Nearly five years ago, during a meeting of the now defunct  federal CFS Coordinating Committee (who stopped meeting despite having a contract to meet and continue because...well, they never did give a reason!), the GAO (Government Accounting Office) presented its findings to that committee.  They said that a whole lot of money that was supposed to go to CFS by the NIH was really going to other areas that may have a small overlap with CFS--- or not! But the GAO found nothing wrong with this, just shrugged it off, and the practice continues to this day.  It blows my mind to see another national group saying the NIH should spend more money on CFS.  Why?  Their grants don't accomplish anything at all.  The three independent research centers that they funded occasionally did some good work, but they stopped funding them (no reason given by the No Illness Here when they cut them off) and there was no outcry from anywhere that we were aware of except for the National CFIDS Foundation, Inc. that seemed to be a lone voice in the vast wilderness.  So why is that other group (you know, of course, that I'm referring to The CFIDS Association of America) demanding more funding from them? (Yet they arranged for a delay for the CDC to pay us back?) Well, there's nobody at the NIH to even approve any grant that may have merit who understands anything about ME/CFIDS!  They don't have one staff member in charge of allocating grants that knows diddly about ME/CFIDS. 

     Indeed, the NIH has elected to fund many grants that they list under "CFS" on their website.  Some of the grants, however, have nothing whatsoever to do with CFS and don't even mention the disease in the abstract yet they were funded with CFS money.  In fact, A pretty high 30% fall into this category!  Why were they funded under the CFS budget?  One such example of this is a way to delay the progression of arteriosclerosis.  While I'm not saying the study has no merit, this has zilch to do with ME/CFIDS and won't help us folks a bit.  So why is money for CFS funding it?

     Of those grants that were funded that have direct bearing on CFS, one study is on twins in Sweden.  They already funded one for twins in the United States (yawn) that found one twin may be sick but the other is well, one twin feels this way and the other feels that way, etc.  The other studies won't help you get better any faster, although they may well further the knowledge a tiny bit of already known mechanisms that have gone awry in ME/CFIDS, such as "Sleep and Cytokines in Chronic Fatigue Syndrome." That study is being done at the prestigeous Massachusetts General Hospital, a teaching hospital of Harvard Medical School. We already know a great deal about sleep problems and even more about cytokines. It won't translate into any real help for the patient community.  Another study is on "Regulation of Adrenal Function in Fibromyalgia" yet fibromyalgia is not the same illness and is funded separately under musculoskeletal illnesses (while, to the shame and chagrin of my mankind, ME/CFIDS is under the Office of Women's Health!).  Yes, exercise hogwash is included in "Activity Intervention for Chronic Fatigue  Syndrome" as well as phychobabble that is called "Psychiatric Comorbidity in Chronic Fatigue Syndrome".  Don't I remember way-y-y back when the NIH tried to link CFS to depression and came up with the opposite result?  So they refused to publish and the lead researcher-shrink, Dr. Mark Demitrack, left and went to a private medical school to spend the next two years replicating the study?  You remember...when he submitted for publication, the NIH blocked him and dusted off the old study to publish!  Well, looks like the NIH is still up to their old tricks.

     But, hey, they are using our meagre budget to fund "Role of Fatigue in Rheumatic Diseases" Huh?  Is this a rheumatic disease?  No.  Does it have anything on earth to do with ME/CFIDS?  Well, no, but they are looking at "fatigue."  But is ME/CFIDS really about fatigue or is fatigue a symptom that involves just about every chronic illnesss that exists?  Well, the answer to that is only too obvious.  But they are spending our money to fund studies that won't really bring answers to anybody but, least of all, to those with ME/CFIDS.  Hillary Johnson, the author of the historical and must-read book about ME/CFIDS, Osler's Web, wrote on an online group recently, "Why fight to get money for NIH?  Even if they were willing to spend it on ME, which they're not, they wouldn't spend it properly because the terribly confused people who approve the grants don't know what ME is; in fact, they think it's impossible to define and probably doesn't exist..."

     One member of the NCF wrote to the NIH and got this response, "This is in response to your e-mail to Dr. Elias Zerhouni, National Institutes of Health (NIH). Dr. Zerhouni has asked that we reply on his behalf. We appreciate the opportunity to address your concerns about the continuing NIH commitment to study Chronic Fatigue Syndrome (CFS), a puzzling and complex multisystem disorder. NIH, through its Institutes, Centers, and Offices, has supported and will continue to support interdisciplinary research and programs aimed at providing answers to the many questions about CFS that scientists and advocates seek."  Oh.  Am I wrong in assuming every year is as disastrous for ME/CFIDS funding as 2003?  O.K., let's look at 2002.  You'll be just as horrified if not more.  Again, they fund so many under "CFS" that have nothing to do with CFS.  Over 37%, in fact!  Such as one on high glucose And, again, several on fibromyalgia despite fibromyalgia having their own budget and their own category. One is "Are Fibromyalgia and Chiari 1 Malformation Related?"   Another is "Chronic Low Back Pain as a Model of Fibromyalgia." Give me a break! FMS is secondary in ME/CFIDS and many of us don't even have it and we don't miss it, either! Mycoplasma is secondary to CFS, so why aren't they funding mycoplasma research?  Some of those that are under CFS that have nothing to do with CFS include a study on circadian rhythm and sleep disorders in the elderly!  But one they did fund for CFS was "Psychiatric Comorbidity in Chronic Fatigue Syndrome."  Sure, instead of answers and help, we get more psychobabble with our own tax dollars!  Just what we really need, huh?  They're also funding why your nose runs with CFS, like that's one of the major problems.  And, of course, even those funded that may have something to do with ME/CFIDS do not account for any specific dollar amount that actually is funded for "CFS" and only "CFS". 

     Ray Colliton, the Manager of the Co-Cure Project, broke down the percentages of funding for CFS.  He found that there were 36 studies funded as CFS in 2000 but only 32 mentioned "CFS" in the abstract.  In 2003, the number went down to 20 studies funded but only 14 mentioned "CFS" in the abstract.  He said, "The percentage of total studies metioning CFS in their abstracts most likely does not correlate to the percentage of total funding charged to the CFS budget.  These figures are not currently available, although the public most certainly paid for them."

     Am I writing my Congressman to complain?  Nah.  Why not?  He won't care.  It will be a waste of my limited energy.  Unless they show gross misappropriation of funds like the CDC and then tell baldface lies directly to Congress, it doesn't mean squat.  Am I hopeless?  No way.  I just am thankful that we've got one small and dedicated group out there who refuses to take their eyes off the ball and has made research progress by leaps and bounds.  Go, team!  Go, NCF!

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606