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President's Message

The most popular movie was "Titanic" in this country.  The year was 1997.  It was the year that a small group founded the National CFIDS Foundation.  They felt that research was too slow and that the most promising work was not funded.  They saw work that was idled and patients were desperate for answers.  They felt they could do no worse than these other groups and, perhaps they could do more. Our next issue will mark our tenth anniversary but there are no plans for a celebration.  As an all volunteer group, our celebration will come when we are ready to cease to exist as a group because we have found a treatment along with the cause of this disease.  We have no interest in participating in "Lobby Day" since there is no one particular legislation to "lobby" for.  We have, from our inception, contributed to and urged our members to participate in the May 12th Awareness Day.  Our main goal, however, remains funding research and that has never changed.

     There is no need to brag about that, in a few years, we've spent a quarter of a million dollars to fund research.   What we are proud of is that any funding that must first be able to connect the dots of all past scientific discoveries.  To avoid doing this assures us that we will go nowhere very fast!  There are many who focus their discoveries on one thing.  We purposely avoid doing this.  It is akin to someone just concentrating on the tail of an elephant and ignoring the rest of the animal.  To fund research in a disjointed manner will lead to progress in one small area but not help the patient community and we are the patient community.  The key is for researchers to show a proof of concept so that they are not ignoring any past discoveries.  To ignore this is to remain stagnant or to just find out a bit more about one particular mechanism that will not benefit any patient.  One must never ignore past discoveries that have been proven. 

     We began by funding various areas of science just as most charitable organizations do.  When we began to connect these areas, we found out that our disease is not a mysterious syndrome but a very real disease that is capable of some very nasty outcomes.  While we weren't happy that we found the disease is producing a toxin in our bodies that is 1,000 times more potent than arsenic, to ignore the proven fact means we will never unravel enough to be able to attack the problems found.  We cannot and will not allow a window of opportunity to pass by refusing to acknowledge the facts.

     There have been countless theories that have been put forth but there is only one that appears to embrace the entire process and that is one based upon careful science. While there has been nearly deafening silence after we let others know that a researcher had discovered the cause of CFIDS/ME, those we consulted with point to that researcher's "impeccable" work. And good science can lead to further good science if not ignored. But one example was a paper published in In Vivo (2006, 10/2, Kodama and Kodama) from Japan that said they referred to chronic fatigue syndrome as "interstitial pneumonia".  That, of course, is caused by a paramyxovirus.  We must apply a universal litmus test to all theories that are presented and discard the ones that allow for answers for only a small "subset" of the disease.  All diseases range from mild to severe but to divide them in order to ignore facts is the same as wearing blinders to avoid key evidence.  For example, apotosis (cell death) was proven years and years ago.  To spend funding looking at areas that are not capable of apoptosis is akin to wasting money but, more importantly, to wasting time.  There are many charities that fund research and they all claim that their present funding holds great hope but if they haven't connected the dots, the discoveries will lead nowhere that helps the patient.  That is why, when the research is completed, we often never hear about the results from other groups.  We only hear how "hopeful" their next funding seems to be.

     This is not the time for funding only what proposals come to us.  Our medical director and his committee have scoured patents and found out what has not been published and shared with others.  They approach researchers with information and hope that they will enter the field of finding real answers for CFIDS/ME.  We cannot and will not sit idly by waiting for a miracle.  Answers are desperately needed.  For the acute patient who is housebound and bedridden, there is no help today.  If they were victims of rape or alcoholics, help is not only available but readily forthcoming.  For the patient with this disease, there is only a daily struggle.  We want see that change.

     The National CFIDS Foundation has never funded research without reporting on the results of that research.  We often do not let everyone know what particular researcher we have funded at times until the study has been completed.  However, when that point is reached, we let everyone know who did the work and what was accomplished.  The present work we're funding is prying into the very basic science of this disease.  We are hopeful that, when it is completed, there will be nothing left to do except come up with therapies that are the same for every patient because they will be based upon the actual cause and what is happening.  That's when we'll celebrate along with all of you.

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