Monday, December 12, 2011

Chronic Fatique Syndrome/ME/FM - A Call For Research To Find A Cure!

Monday, December 12, 2011

Scott Carlson, CFI Executive Director
Chronic Fatigue Initiative
New York City, New York

I was so pleased to read that the Hutchins Family Foundation has the interest and motivation to support research for CFID/ME/FM. It is a devastating illness.

I am writing to inquire with all seriousness to see if this Foundation can in any way support a research project based in the world of Alternative Medicine. I was diagnosed with CFIDS in 1987, though I was documented with malaise in 1985. My pursuit was directed into holistic approaches early on because there was nothing in the medical world available. I saw Scott M. Hammer, M.D. in late 1985 at the Deaconess Hospital in Boston, MA, for a second opinion.

My prognosis was not good. I was devastatingly ill at the age of 33, there was nothing that could be done and I was expected to “live”. I was forced by this condition to be virtually immobile 96% of the time for 5-7 years. My muscles atrophied to the point that my muscles could not hold my skeletal structure in place. I was plague with nearly 50 symptoms that waxed and waned leaving me praying to die. The pain that accompanied this condition was often times unbearable, I felt tortured by my own body. Over the years, I experienced improvements with several holistic/alternative practices.

In 2004/2005, I became aware of the research of Robert O. Young, PhD, DSc. of The pH Miracle Center in Valley Center, California. After attending a lecture he gave in March of 2005 at Harvard University, I was so convinced that he was credible and based his findings on solid science, that I began applying just the dietary changes he recommended and in about 1 year I experienced enough improvement that I liquidated some of my retirement account and flew to the ranch to study the science behind his research. I had to do this because I felt so fragile and I needed the understanding to help keep me focused with knowledge about how to create wellness in my body. The quality of my life has improved immensely. Since everything I have done is paid for out of pocket, I have reached the point where I do not feel I can complete my healing process due to finances.
I would love to collaborate in setting up a research project based on the research of Dr. Young to bring validation to what I have experienced, to complete my own healing and to hopefully bring relief to so many who have suffered for so long. I am trained as a Nutritional Microscopist by Dr. Young and feel that I could make a contribution to the CFIDS/ME/FM community that is worth funding. This collaborative would also need the expertise of other holistic practitioners.

I have no medical training. I have no training in research. However, I have 26 years experience living with CFIDS/ME/FM and finding my way back towards health. I do know the value of recording and documenting results. I have all my medical records since the onset of CFIDS/ME/FM on May 20, 1985.

I have a Double Major - BA in Mathematics and Secondary Education and a minor in Computer Sciences from my undergraduate studies.

CFS Central: The Chronic Fatigue Initiative website states, “CFI will offer grants to fund new research guided by five or six general hypotheses formed by a scientific advisory board of leading scientists and clinicians.”

I propose that CFI authorize a CFHI, Chronic Fatigue Holistic Initiative, division and collaborate with myself and Dr. Young to create a Scientific Advisory Board of Leading Alternative thinking scientists and clinicians. This would primarily be a non-pharmaceutical approach to healing CFIDS/ME/FM. This would be New Research.

Chronic Fatigue Initiative: …..“Through the CFI-sponsored research, we hope to clearly define the causes of the disease.” I believe that Dr. Young’s research can answer this question scientifically. I am living proof.

Certainly this effort would need to be in collaboration with Medical Doctors. Markers could be studied throughout the project, however traditional research would need not to drive the research. And due to the numerous health conditions that CFIDS/ME/FM hosts, monitoring of blood chemistry and any other needed patient specific monitoring and tracking would need to be in place.

I have prayed for this type of possibility to become available.

Dr. Young, would need to be a primary consultant in this project. I would be happy to answer any of your questions that I am able to.

In conclusion, what I know to be true now that I have been able to read and absorb current CFIDS/ME/FM information is that my correct diagnosis should have been ME/CFIDS/FM with 50+ symptoms. I would appreciate a response that includes:

• How my request can become one of the five or six general hypotheses

• What information I would need to provide to satisfy the above request

• An openness from the Board to hear the science behind Dr. Young’s work

• Any other criteria that I would need to address

• What resources the Board would need to bring this request to fruition


Elizabeth C Potter (Libby Potter)

CC: Nancy Klimas, MD 1-305-595-4300
CC: Scott M. Hammer, MD 1-212-305-7185
CC: Robert O Young, PhD, DSc. 1-760-751-8321

No comments:

Post a Comment

Good Healthy | Proudly Powered by Blogger