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CFIDS Patient Report on the BIO 2004 International Convention: Are We Moving Toward a Cure?

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Is There a Balm in Gilead and How Do We Get There? By Paula M. Carnes

The BIO 2004 Annual International Convention in San Francisco, California ran from June 6 to 9, 2004. Total registration was 16,901 with 61 countries represented including scientists, CEOs, government officials, and investors. Even the sun was in attendance with four blue-sky days, unusual for San Francisco.

The Moscone Center is huge and intimidating, especially when crowded with thousands of people. Each morning the streets outside were full of police and protesters. I found myself drawn to the protesters, wanting to join their dance in the street, but my health issues with chronic fatigue and immune dysfunction syndrome (CFIDS) preclude dancing. So I headed inside each day to search for healing. Maybe next year I could dance with the protesters who were worried about bio-engineered tomatoes.

On the second day I was amazed to see a few small tables on the second floor of Moscone West for patient support groups, disease groups such as lupus, Crohn’s, ALS, and celiac disease. I felt I had tumbled into autoimmune alley. Not many scientists or investors were over there chatting with the support group representatives. You must understand that the big moneymakers, or so people think, are cancer, heart disease, and AIDS. But maybe it was just because the support groups could not afford to give away 16,000 cute little gifts such as canvas tote bags, pocket calculators, refrigerator magnets, or plastic glasses of wine. I happily shared CFIDS stories with the lupus patient manning her booth. Then I inwardly committed myself to attend the one session in four days where support groups gave presentations.

Until the very end I did not hear the diseases CFIDS, fibromyalgia, Gulf War Illness, or Lyme disease mentioned in any session I attended. I did attend a session filled to overflowing with 100 plus Russian scientists. I hoped they might mention bioterrorism research, but alas, they are seeking US funding for Russian biotechs, a noble capitalist goal. I applauded them and wandered on, hoping to find my “balm in Gilead.” And thus it evolved that I did indeed find Gilead. On the morning of the last day I attended the session “Partnering with Patient-Based Organizations to Achieve Patient Health and Research and Marketing Goals.” I was disheartened to notice that in a room that seated about 1,000 persons, this session held maybe 75 – a high estimate. Most of my previous three days of sessions were full with 1,000 and standing room only. Clearly the biotechs did not feel they had much to learn from patients. Two speakers presented information on rheumatoid arthritis, Crohn’s, and colitis. Three speakers presented information on AIDS activism. With my usual optimism I figured I could learn from these presenters how to get with the program. Perhaps next year at BIO 2005 in Philadelphia we could get Dr. Carter and Hemispherx Biopharma to present something. I felt this even more strongly when Dr. Alvan Fisher, MD, an advisor at Gilead Sciences presented information on the up and coming AIDS drugs.

After the hour and a half long presentation I rushed up to introduce myself to Dr. Fisher telling him that a Dr. Jemsek in Charlotte, NC, an AIDS specialist, had begun treating many chronic fatigue syndrome patients who were turning out to be chronic Lyme or borrelia patients. Dr. Fisher said that he knew Jemsek well and that Jemsek had just spoken recently at a conference right there at the Moscone Center. I commented, “Dr. Fisher, we CFIDS patients are still at the place where AIDS patients were back in the mid 80s even though the two diseases appeared around the same decade. His reply in a large booming voice, (or maybe it just seemed that way to me) “You are not even that far along.” I wanted to cry, but instead I took a deep breath and responded, “No, I guess not. We don’t even exist, do we?” He just shook his head with empathy.

Later at lunch I chatted with a couple of scientists explaining to them that I had decided to look at biotech for possible CFIDS treatments. I mentioned that so far only one drug, Ampligen, was being developed to treat CFIDS. The one scientist relied, “What is CFIDS? How can we develop a treatment when we have no idea what it is?” I took a deep breath, preparing to make a fool of myself trying to say something scientific sounding to a scientist. Rapidly I blathered, “Ampligen affects the damaged RnaseL pathway that is damaged by viral infection. Ampligen is also in research for AIDS therapy, so the assumption is that CFIDS may be caused by a virus, only none has been found. The scientist said nothing, so I figured I was talking over his head. The second scientist seated at the same table said that his neighbor, a lovely woman, had CFIDS. (Should I have taken that to mean she didn’t look sick?) They live in Massachusetts. I immediately replied as my heart flipped over, “Living where you do I would certainly suspect Lyme.” He said, “Oh surely they would have tested her for that, wouldn’t they?”

Brooke Shields and Patti LaBelle entertained us at lunch with tales of biotech assistance with getting pregnant and treating diabetes. Brooke called her little baby girl her “popsicle baby” because Brooke’s eggs had been frozen prior to fertilization. Both women were asked, “Why don’t the stars do more to promote funding of research?” I sat there thinking of the stars with CFIDS who rarely make public statements let alone raising funds. Is it because they are just too tired? Have they been asked?

As 4 PM approached on the last day I walked slowly to the final session, Immunomodulators: Drug Discovery and Development Challenges. I would have to leave this session early to catch the rush hour BART to Oakland and my flight home. Lauren Black, Ph.D., Senior Scientific Adviser, Charles River Laboratories rose to the podium and coughed. She was struggling with a severe cold but rose gallantly to the challenge. “Immunomodulators are prescribed for many serious diseases, including psoriasis, asthma, autoimmune diseases, graft rejection, cancer and AIDS.” Her first slide flashed on the screen – a list of diseases related to a disrupted immune system. Far at the bottom in rather small print I saw my first glimmer of hope in four days. “Chronic fatigue” and “fibromyalgia” were included. Dr. Black didn’t get that far in reading the lengthy list, but, by then, I was just grateful to see the words in print, even if chronic fatigue was not even a “syndrome.”

Her continuing comments were discouraging, but they defined the problem. That is a starting point. Current treatments are toxic, none are getting at the cause, thus there is no hope in the near future for a cure. Presently the causes are unknown. The onset of these diseases is most commonly under age 40, generally in one’s 30s. Trials for rheumatoid arthritis do not have placebo control arms because the disease is so serious and progressive one cannot ethically place patients on placebo only. Was there a ray of hope? Yes, because the underlying immune system reaction may be the same in several of these illnesses the same immune modulating drug may be tested and approved in more than one disease at a time. The biotech way to say that is you can file multiple INDs with the same drug for different disease indications. Given this line of thought, Actos to reduce TNF alpha (Dr. Ritchie Shoemaker, MD) and Benicar to reduce IFN gamma (Dr. Trevor Marshall, PhD) make sense.

As I stood on the subway with all the baseball fans heading toward Oakland, suitcases in hand, I wondered where the next twelve months would take the CFIDS community. I was thinking that we with the unnamed, unacknowledged, unknown disease could well hold the key to finding the causes and cure of these immune system diseases. The very fact that we have no label can be turned to our advantage because a name assumes that you know what you have. In our case we have no false assumptions. Philadelphia is the site for BIO 2005, to be followed by Chicago (2006), Boston (2007), San Diego (2008), and Atlanta (2009). It occurs to me that next year at BIO in Philly we CFIDS patients need to be represented. We need to have a support group booth, a star lunch presentation, a couple of scientists, and a biotech company for starters. Solving CFIDS just might provide the roadmap to the balm in Gilead.

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