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

By Nancy Kaiser
I left the CFIDS Association of America (CAA) membership ranks quite a few years ago. A fellow PWC recently forwarded an article to me he thought I might find interesting from their summer 2007 Chronicle written by Kristina Hopkins. I would like to compliment Kristina on her article, "Message to Members ", as, in many ways; it was a cut above the usual empty ramblings and promises found in the Chronicle. Her article was a bit of history regarding CFIDS. I would like to expand and reminisce a bit on her comments as I was mentioned being one of the pioneers. Because this is reminiscing, I won¹t be focused on one particular subject but a compilation of my thoughts and frustrations as to the direction the CAA chose to take. To quote from Kristina¹s article "working towards a shared goal" was exactly what we pioneers were doing and after reading that statement I was compelled to write this article as it is quite apparent, through the years, we were betrayed.

In the late 1980s I felt honored to work along side people like Marc Iverson and had such respect for him and his plans for the CAA. We shared some philosophical conversations, hopes and plans for the future and many advocacy "adventures" our little group of pioneers successfully undertook, plus I had the privilege of being one of their guest speakers at their 1990 CAA North Carolina Conference. Our group worked well together -- no one looking for power, control, money, and attention -- just one goal: the cause and a treatment or cure for CFIDS. There were never the insults, unkind words or battles I have seen now on CFIDS message boards and on the internet among PWCs.

To begin with, I stopped supporting the CAA out of sheer disappointment and disgust after Kim Kenney McCleary took the helm. Kristina¹s article was paying tribute to the PWC pioneers of almost 20 years ago and I was privileged to be one of them. I recently was made aware of the number of employees the CAA now have and the huge salaries paid these people and it does not balance or make sense as the CAA isn¹t any further down the road for our disease than 20 years ago. Marc --how and why did you let this happen? When I dealt with you at the NC conference in 1990 you were the enthusiastic, honest advocate I had always worked with. When we met again at the Albany Conference several years later -- by that time you were with Kim Kenney-- and it was as though you had a personality transplant and Kim Kenney had you in tow. I was shocked -- and not too long after that you resigned from the CAA and I watched the disintegration of a fine advocacy/support organization and the CDC intervention and take over (along with some very poor lobbying by Tom Sheridan¹s group) . Now the best the CAA can do is the "Faces of CFIDS" and this type of PR plus more prevalence studies and disorganized research-- is that going to find a cure or treatment in the near future or is this insuring these CAA employees (who do NOT have CFIDS/ME) job security and a continuing coverup for this disease?? That is not a hard question to answer.

To add to my reminiscing I would like to say how much I appreciate Gloria Baker¹s name mentioned as one of the pioneers. Gloria and I were as close as sisters and I am certain many of the later PWCs have not heard of her and there is no one more deserving to be honored more than Gloria. She set the advocacy bar very high and was one of the finest individuals I have ever had the privilege of knowing. The questionable circumstance of her suicide is still a heartbreaker to all who knew and loved her.

A few more comments and then I will fade into the background again. First, my name was mentioned in connection with being an Ampligen patient. That is a true statement, but I want to clarify this. The drug did help me initially and those participating in the original study were all so thrilled to be involved in a possible treatment for this disease. However, in time it started causing more and more problems. When I was taken off the drug, it was very apparent the drug is not the answer. When anyone asks me about Ampligen my answer is very simple and straight forward. In my opinion, I would never advise anyone to take the drug nor interact with Hemispherx. In one of their patents (patent # 5,958,718) statements were made about my improvement and background which were not true. I reported this to the FDA and there was never a return acknowledgment from the FDA. Also, there has never been a long term assessment regarding my health by Hemispherx as to the safety of this drug and I was on it for five year.-- yet they keep talking about the drugs long term safety record of Ampligen.

I would like to add the names of two very special people attending the CAA North Carolina Conference who weren¹t mentioned in Kristina¹s article. One is Elaine DeFreitas whose scientific knowledge and contributions were profound. The other person is Hillary Johnson, the author of Osler¹s Web. One could always find Hillary sitting quietly and most attentive in the background taking copious notes and asking in depth questions. At that time Marc Iverson and the CAA were giving Hillary all sorts of encouragement to finish and publish her book. I could never understand when the book was ready to go, the CAA was not there for her and their lack of support dealt the credibility of our disease a huge setback -- as those of us who have read her book and know Hillary, appreciate the exemplary work she put forth in writing our saga and how conscientious she was in that effort.

And last but not least, having been one of the early PWCs, I am still saddened by the changes in the attitude the doctors and researchers who specialized in our disease. How times have changed. There are very few who seem to want a treatment or cure....patents and scientific findings are hidden and money, power, fame, expensive buildings/clinics and control have become the goals. I see PWCs all battling - - it has to be their way and opinion or else and I watch good scientific data and references ignored by patients, doctors and researchers. I can even remember as a guest speaker at the North Carolina conference. I was staying on the same hotel floor as the doctors and researchers who participated in the conference. When breakfast was served in the dining room on that floor -- what was said at the breakfast table regarding the serious of this illness and then what was said on the podium BY MOST OF THESE SAME doctors and researchers later in the day were two different stories. Most did not publicly come out with the truth of this gravity of this illness as they did at the breakfast table.

It is my humble opinion we, as PWCs, had better clean up our act and look at the data the NCF is presenting on their website and in their newsletters and start working together as the AIDS patients did or we are a lost cause. Remember one thing -- NO ONE AFFILIATED WITH THE NCF IS TAKING ONE PENNY IN SALARY OR ANY COMPENSATION TO DO THE SAME THING IT TAKES THE CAA TO DO WITH SO MANY EMPLOYEES AND THOUSANDS AND THOUSANDS OF DOLLARS-- not to mention the wasted millions from the government (CDC, etc.)-- plus the NCF came up with the correct research and conclusions. I have had the privilege to be on the side lines observing the work the NCF medical committee, Gail Kansky, and Al Cocchetto are accomplishing. We need to thank our lucky stars we have these folks behind us and we need to band together as with our numbers is power. If you have the same disease I have -- the only thing you wish for is a treatment and/or cure. Those things don¹t fall into your lap -- we have to work as a well oiled machine to achieve this feat.

Now I have shared with you a bit of the reminiscing and history of CFIDS/ME. As my history teacher use to say "CLASS DISMISSED and I hope I have made a difference in your lives today!" (And to show you what a small world we live in, my favorite history teacher of over 50 years ago turned out to be Al Cocchetto's cousin.)

Thank you Kristina Hopkins, for your well written article.

[Ed. Note: That same issue of The CFIDS Chronicle had many striking errors (Vol. 20, Issue 3). Just one was when they wrote about the first national advocacy organization, CACTUS (CFIDS Action Campaign for the United States) and said it was begun by two San Francisco leaders along with others "including the CFIDS Association of America and Mass. CFIDS." It was begun, in fact, by a patient, Joan Iten Sutherland, whom they stated "was hired" while they claim "Thomas Sheridan was engaged." Joan was not "hired" but was a patient who helped form this first group that began the day to lobby and the CAA had nothing to do with it except to hasten the quick demise of CACTUS and hire away Tom Sheridan as their lobbyist although the president, Marc Iverson, did suggest the name. Mass. CFIDS had nothing to do with CACTUS. The first national group, although they fail to recognize it in their historical recollections, was a Portland, OR group that the CAA also helped with its demise. This Portland group was the first group to have the disease mentioned in a national magazine. The first issue of The National Forum (Vol. 1, No. 1, 1997) stated that many of their goals were taken from CACTUS. It seems that most on the staff of the CAA need to read (or reread?) Osler's Web!]

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