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Recognizing an extraordinary Chronic Fatigue Syndrome advocate

  [ 2895 votes ]   [ 1 Comment ]
By Source: Healthwatch • • January 1, 1999

At the keynote dinner Sunday night, The CFIDS Association of America presented Jerry Crum with an award named in his honor: The Gerald R. Crum Award for CFIDS Advocacy. The award will be presented annually by the Association’s Board of Directors to honor a leader in advocacy on behalf of the CFIDS community.

Jerry, who was diagnosed with CFIDS in the late 1980s, was a pioneering advocate for research. With the help of his doctor, Daniel Peterson in Nevada, Jerry’s blood was the first CFIDS specimen sent to Dr. Robert Suhadolnik at Temple University to be analyzed in his research of the 2’5’A synthetase anti-viral pathway in the body. That research has led to the development of a potential marker for the illness and to the drug Ampligen, which is currently in clinical trials to treat CFIDS.

Jerry presently serves as a patient representative on the federal CFS Coordinating Committee. He was the first chairman of the Association’s Public Policy Committee, and his wife, Coco, presently serves as a vice president of the Association’s Board of Directors. He continues to campaign for the rights of all disabled people and particularly for those persons disabled by CFIDS.

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Article Comments Post a Comment

Advocating for CFIDS, how far have we come...
Posted by: LadyWolf25
May 6, 2011
In the last 23 years or so, when I was looking for answers, to what I was dealing with, and my own theory of what triggered a gradual, then acute full blown onset. I was so happy to here about the CFIDS SOCIETY OF AMERICA. Also, the healthwatch newsletter. At the time in 1989-91. It was about my only resource, I could count on, while going through my Industrial claim and disability. However, after so many years of chasing the ghost of this disease, I am no further ahead than I was then, when it was just becoming recognized. I was 28 then, and now, just passed my 51st Birthday. So how far have we really come? Yet I still hope, for a breakthrough. If there is, most probable it would be financially out of reach... I am genuinely greatful, to the people who have dedicated their time & effort to our plight! Hang in there! The scientists, physians and families who have dedicated so much, and still watch a loved one helplessly suffer, with a look of dissapointment, because they can't begin to understand. (I don’t nor will I ever, untill hard evidence is found, not just a theory.) Or, is it all politics & money for pharmaceuticals, which only subdue the pain, making it somewhat tolerable? Are we getting government funding, or being put on the sidelines, instead of getting to the root of it... We live in hard times I know, how many more lives will be taken, the cost will be undetermined. Tell me what I can do and I will do it... Thanks to technology, I have found a website, where I can have a voice and perhaps, find some self-worth, in promoting more genitic funding, studies & baseline testing to be made available not only to research but, to persons like myself, our kids, who need a radical testing aproach, made afordable to the disabled, who continue to suffer endlessly with no end in sight. Or, for the option (God Bless Dr. Kavorcian) to choose weather or not, one wishes to continue on exsisting, yet unbearable to live! It has been a long road, but at times I have to wonder how far have we really come... If I had the funds or won a lottery, I would give it all to research. I often wonder if my kids, will end up like me, which I can't bare the thought of... Now, all I can do, is keep searching to find ways of helping, to push harder for ways to help those who still have a chance of beating the odds. If people are curing cancer through diet, alternatives & organic methods etc... Then we should be able to have the same opportunity. But first, patients need to have a complete subset panel of DNA & genitic testing, to track what is lacking. This comes at a cost, which to date is only used for research and not to the majority. If I can find a way and the strength to raise more awareness for more benifits, I will do this... Yet, I fear just getting through another day or sleepless nights, I am losing the battle. For those advocates who are still able, a sister, a brother, a mother... I thank you and pray for devine intervention, for those who are no longer able to fight. Please don't give up on us... We need you! Respectfully, LadyWolf25
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