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Perception is Everything
What you see isn't necessarily what IS...
Date: 3/9/2005 6:03:46 PM ( 19 y ) ... viewed 3010 times PERCEPTIONS ARE EVERYTHING
Is it possible that being stuck with fibromyalgia syndrome (FMS) or chronic fatigue syndrome (CFS) just isn't the "in" thing? These conditions aren't popular in the media, and the government funds precious little research on them. Maybe you would be better off with male pattern baldness or impotency instead of FMS/CFS. In most major cities there are ad campaigns looking for research participants for these more popular disorders, with the added perk that if you become a study participant you will get all of your medications free for the next six months ... what a deal! No one offers people with FMS/CFS free care with no strings attached, do they?
The roadblocks that you face are those of false perceptions. First, there is the common problem that you look fine but feel terrible. Every patient faces the task of explaining this predicament to others: some get it and some don't. But looking good while feeling lousy doesn't conjure up that award-winning picture on the front cover of your local newspaper.
Your second problem has to do with how your pain is perceived. Most people, even health care professionals, tend to be more believing of your pain if you have a visible injury or disease (e.g., swollen joint). For FMS, this isn't possible, so you might not get the level of understanding you are looking for ... and for that matter, what you deserve. In the January 1998 issue, you'll note that we have addressed the fact that FMS/CFS pain does exist in the absence of observable tissue injury or disease. Of course, you already know that, but it seems to be everyone else's perceptions that count the most!
How do you fight back against the twisted perceptions that cling to FMS/CFS? The Lupus Foundation of American recently launched a bold campaign implying that because lupus strikes mostly women, it is largely being ignored, both by the media and by the federal government that supports research. Kudos to the Lupus Foundation for saying what many patients with FMS/CFS think about how they are often perceived.
If the lupus folks are right, then how could gender be playing a role in the way research dollars are allocated? Take a look at Congress. These are the people who appropriate the money for government-funded research. If you watch the hearings on C-SPAN and squint to see all the faces, you won't locate many females (other than the occasional court reporter). But just because Congress is male-dominated, it doesn't mean that they would ignore women's health issues, would they? Until Vivian Pinn, M.D., wrote the Women's Health Initiative in 1990, The National Institutes of Health (NIH) was spending less than 10% of its allocated money on women's health-related conditions. Dr. Pinn has substantially changed the face of research at NIH, but under the surface, one must remember that the makeup of both the NIH and Congress may not have changed substantially. Their perceptions about FMS/CFS (and those of lupus) could be outdated and a reality check might prove helpful for 1998.
Three-Step Game Plan To Improve Perception of FMS & CFS
Congress: Do predominantly "male" conditions fair as poorly as FMS?
Call and write your two U.S. senators and your person in the House of Representatives. Don't let them ignore you, because that is exactly what they will do if you don't contact them. Directions on how to get in touch with them can be found on the side insert. Here's your pitch: You (or someone you love) has FMS; it affects five million Americans (2% of the population, mostly women), and this is documented in the January 1995 issue of Arthritis & Rheumatism. A study in the June 1997 issue of Journal of Rheumatology indicated that 26% of patients surveyed were on disability, yet the National Institutes of Health is spending less than two million dollars per year on FMS. That equates to less than fifty cents per patient per year for research on a life-impacting medical condition!
Is there a more prevalent, more disabling medical disorder that afflicts mostly men for which the NIH spends less dollars per patient?
You would appreciate a response to this question. In particular, you would like to know what Harold Varmus, M.D., the director of NIH, has to say about this matter. And, if there appears to be a gender bias in research, you would like this situation investigated. You would also like to know what both NIAMS and NINDS plan to do for stepping up their research efforts in FMS. Provide your name, address and phone number on all letters. Always write and continue with follow-up calls until you are satisfied.
The National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS)
Director: Stephen Katz, M.D., Ph.D.
For those who may not know, NIAMS is the traditional home of FMS research. Dr. Katz took over the directorship August 1995, and since that time the funding for FMS research has not improved, although the overall allocations to NIAMS has gone up 6% each year. More details of what little has been funded are on page 19. Dr. Katz needs to be asked: Why isn't NIAMS working to improve FMS research, despite the past two years of Congressional language urging NIAMS to do so? Use the address, phone and fax numbers on the insert.
The National Institute of Neurological Disorders and Strokes (NINDS)
"Acting" Director: Audrey S. Penn, M.D. (Previously the Deputy Director)
NINDS has never spent a penny on FMS, yet they are the largest sponsor of pain research at NIH. Given that FMS is one of the most prevalent chronic central nervous system pain disorders around, Dr. Penn needs to be asked: Why isn't NINDS making FMS a priority? ... it doesn't have to be number one, but FMS should exist in the NINDS project list.
NINDS is sending form letters to patients, saying that NIAMS is responsible for funding FMS research, not them. Not so! NINDS is just trying to pass the buck. They are responsible for central nervous system-related research at NIH and with the recent findings of CNS abnormalities in FMS, NINDS can no longer skirt their responsibilities in the area of FMS research by simply pointing their finger at NIAMS.
Remember, you have a voice! Make yourself be heard. Use the address, phone and fax numbers listed below to contact the directors of these institutes.
Contacting Your Representative and Your Two U.S. Senators:
Look in your phone book under United States Government, or
Call the Capital Hill Switchboard at (202) 224-3121 for their Washington phone number, or
Look your Senator or Representative up on the Internet, or
Use the following two generic addresses:
The Honorable (name of Representative)
U.S. House of Representatives
Washington, DC 20515
or
The Honorable (name of Senator)
U.S. Senate
Washington, DC 20510
Contacting NIH Directors:
Audrey S. Penn, M.D.
Acting Director, NINDS
NIH Bldg 31, Room 8A52
31 Center Drive MSC 2540
Bethesda, MD 20892-2540
Phone: 301-496-3167
Fax: 301-496-0296
E-mail: ap101d@nih.gov
Stephen Katz, M.D., Ph.D.
Director, NIAMS
NIH Bldg 31, Room 4C32
31 Center Drive MSC 2350
Bethesda, MD 20892-2350
Phone: 301-496-4353
Fax: 301-480-6069
E-mail: katzs@od.niams.nih.gov
If you receive a response, please send it to us at FM Network, PO Box 31750, Tucson, AZ 85751-1750. If you need additional information, you can call us toll-free at 1-800-853-2929.
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