"Relentless Pursuit of the Truth" R.E.S.C.I.N.D. - what we are about
RESCIND, Inc. is a non- profit 501(c) 3 corporation. It is basically a virtual corporation. Our mission statement is our name. The word RESCIND means to repeal, roll back and abolish. We believe that as a community, we must repeal existing stereotypes about chronic Immunological and Neurological Diseases.
My name is Thomas M. Hennessy, Jr. I am the founder and current President. I live in Potomac, Md., about 15 minutes from the NIH and twenty-five minutes from downtown Washington, D.C. I have been ill for 20 years, and mostly bedridden for the past nine. We have a healthy CPA as Treasurer, and three Vice Presidents -- two healthy and one who has ME.
A long struggle
We have fought for a name change since 1988. My first public speech regarding this illness was at the First National Conference held regarding this illness on April 15th, 1989. I said, "Calling this vicious illness chronic fatigue syndrome, is like calling the act of living, chronic breathing syndrome, it makes no sense, sheds no light on a treatment or cause, and demeans the hundreds of thousands, if not millions of people who suffer in agony every day of their lives. If you do nothing else today, change the goddamn name!"
There was a spontaneous explosion of applause. I was stunned at the response. Some people were howling. Doctors and patients were applauding. I have never experienced such a response before or since. Dr. Phil Lee was the official Host of the meeting (he was the head of the Health Service in San Francisco at the time).
The supposed experts of the time were boring at best and did not convey the obvious different stages of this baffling condition. Out of 650 attendees, more than 80 came up to me afterwards and unloaded one horror story after an other. I vowed then to fight until the name was changed and the funding was at least somewhat commensurate with the billions of dollars in lost productivity of some of the hardest working, smartest, most ethical people I have ever met. (With some exceptions:-).)
Different strokes for different folks
A lady named Karen Freese, who was editor of the newsletter of the fledgling CFIDS Association based in North Carolina, asked me to join her and Marc Iverson in the battle for finding the cause and eventual cure. I said thanks and reread my notes which said that there were probably many causes, not one. It seemed like a small difference at the time. The CFIDS Association grew exponentially and did some really great things. I still whole heartedly recommend them over the National Association in Kansas City. They have similar goals with VERY DIFFERENT approaches.
Two things eventually caused a group of us to split ranks with North Carolina. One is our belief that these four conditions are very similar, if not identical, in many, if not most symptoms:
- Myalgic Encephalomyelitis, or Nightingale's Disease, or Darwin's disease, mistakenly called Chronic Fatigue Syndrome as one conditionIf you look at symptom checklists, these four conditions overlap almost completely.- Fibromyalgia as another
- Multiple Chemical Sensitivities; and
- the newly named Gulf War Syndrome.
The second was a growing sense of "Our way or the highway" coming out of the newly re-named CFIDS Association of America. The story is long and convoluted, but we were not the only ones who seemed to notice the change. RESCIND, Inc. is free wheeling, sometimes raucous, groups of folks who are NOT HAPPY WITH THE STATUS QUO. If God died and left us boss, Steven Strauss, Brian Mahy, and Bill Reeves would be flipping burgers within a week!
We decided in 1992, that political action was the way to go. My father was a lobbyist for Getty Oil in Washington, D.C. for more than a decade. I learned that most politicians care about two things above all others: getting elected; and getting re-elected. And they respond to two things: money or passion.
Change the damned name!
After two decades of David vs. Goliath, we might be on the verge of at least one success. Our main focus from day one seemed like a simple one. Getting rid of this asinine moniker that supposed government workers saddled us with. M.E. was, and in many cases still is an orphan disease. Only low level government officials were assigned to defining this ephemeral disease of a thousand names. We believe the name they chose was the single worst thing anyone could do to us. And we said so early and often. Now after a decade where we were constantly ridiculed, Congress has adopted language in the new Health Bill saying "there is a consensus among the CFS community that Chronic Fatigue Syndrome does not adequately describe the complex nature of this disease." And Congress mandated the forming of a committee to come up with a new name, that more accurately describes this condition.
This might also mean the passing of the reins, to a newer generation of activists. Roger Burns, publisher of the CFS-NEWS Electronic Newsletter, can verify that I had a public argument with Dr. Phil Lee (chair of the U.S. government's CFS Coordinating Committee) about the importance of the name of our condition. Lee toed the company line and say that after a single etiologic agent was found, they would change the name, and not before.
I countered by saying that there were most likely multiple agents that have a common final pathway, "different insult, same result". Dr. John Renner suggested we move on to the next topic, and I said, "Dr. Lee, to show you how serious we are about this, I will donate my body to science today IF you will guarantee a name change that fits the serious nature of this condition". It got pretty quiet, and Phil joked that we didn't need to cut anyone up. And I pulled out the Mass card of a friend who had died from complications of ME just a few days before, and said no one ever died of being too tired, this disease is killing a lot of people and disabling hundreds of thousands, if not millions of people.
I asked the crowd of fifty or so people in the room, "With the knowledge you all now have of this illness, how many of you think that CFS is the best we can do for a name for this terrible illness?" More than half the crowd was government types. Orvalene and company (of the Kansas City based national group) were sitting right there. I asked for a show of hands. There was a deafening silence. Phil Lee started looking around the room. NOT ONE HAND WENT UP. NOT ONE! Dr. Lee's face started to glow beet red. He turned to CDC officials Brian Mahy and Bill Reeves and said, "how come none of you told me there was such unanimous agreement that this name was so disliked." He then said we will put a name change down for next year's agenda and got up to leave the room. He was not happy. As he walked by, he shook may hand and said, "thanks for your guts" and he was gone.
Two years later we are finally at the threshold of a new name. So write to Roger Burns about his Change-the-Name project, write to Dr. Phil Lee, write your congressman.
Okay, we'll TELL you what the big deal is!
I know that some of you are saying what is the big deal? What is in a name. When AIDS was called GRID for gay related immune disorder, only a few doctors took it seriously. Thirteen years later, most all doctors DO take AIDS seriously.
I spent 17 years in sales and marketing. In the business world, perception is reality. Look at tobacco and beer. They all feature ads with beautiful, lithe young girls, and handsome young men with washboard stomachs. And anyone with an IQ over room temperature, knows that smoking makes you old before your time, gives you a hacking cough, bad breath, and then kills you. And you don't get great abs by drinking beer. But for most people perception becomes reality.
Most people still think that we are a bunch of over educated, whiny, weak willed, mentally unstable, young, white women. The facts do not bear out this stereotype. In the Gulf War, we had some of the fittest, best armed, best trained young men in the history of warfare. And yet five percent of them returned with health complaints that mimick exactly the symptoms that most of US have. Thirty our of the first 31 symptoms of Gulf War Syndrome are within 5 % as the governments own definition of M.E. There were not many over-educated, whiny, white women in the Gulf War. Once again, we said "different insult, same result".
After reading more than 10,000 individual letters, some as simple as "PLEASE HELP!"with a return address, to ten page missives complete with resumes and lists of accomplishments, we can list one sentence by a modern day health pioneer, Dr. Melvin Ramsey, who once said, "The degree of debility varies greatly, however, those who persist in working the longest before they collapse, have the poorest chance, while those who get early diagnosis and enforced bed rest have the best prognosis (for recovery)". This is exactly the opposite information that your tax dollars supported government researchers are telling us. The CDC's RESEARCH DEFINITION which says you must be significantly disabled for six consecutive months, with virtually nothing visibly wrong with you, is the exact worst thing you can say to the hard headed people whose minds and will power overwhelm their immunologically and neurologically challenged bodies.
Much to be done
For May 12th, our International Awareness Day, we have more than a thousand people who type letters, call media outlets, call their elected representatives, set up booths in shopping malls, offer to donate blood at RED Cross centers, and then most of us collapse for months. We try to support the CAA when they ask us to call Congress regarding special bills on the house floor, or to answer grossly inaccurate media reports. Most of us are ill, many of us are homebound, and membership fluctuates depending upon health reasons. You do not have to abandon your present support group to support RESCIND,Inc. We welcome opposing views, as long as they make sense, and are framed in a way that helps the debate.
We recommend that you support May 12, International Awareness Day,in every way you can. Some ways of promoting Awareness Day is to phone and/or fax to politicians, news media and public health officials. (See the May 12 page for much more information on what you and your group can do.) And if the Congress follows through on its promise to see that government officials rename this condition, then maybe we can turn over the reins to a new generation of CFIDS/M.E. activists. You can send snail mail to us at:
RESCIND, Inc.or contact us by e-mail at:
9812 Falls Road
Suite #114-270
Potomac, Maryland 20854RESCINDinc@aol.comWe are happy to see some new faces get involved. The last decade has been truly a "Living Hell" for too many people. This is a very serious condition, that has ruined countless lives. Let us hope that the next generation will not have to suffer like we have. But Remember, God helps those who help themselves. "Chance favors the well prepared."
And the German Philosopher Schopenhaur once said,"All Truth goes throught three stages: First, it is ridiculed. Second, it is vehemtly opposed. Third, it is accepted as being self-evident."
Until that time comes, we are in relentless pursuit of the Truth.