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By Mike Reynolds

From Winter 2012-2013 Forum

Would I have ever been aware of so much abuse of federal research or even charitable takeovers were it not for me being a victim of the dread disease of ME that few take seriously? Doubtful. So allow me to pontificate a bit…

Many patients of the ME/CFIDS community are waiting with bated breath for more recognition of an ill-renamed disease called “chronic fatigue syndrome” and they expect that the bits and pieces of research will lead a better future for them via government research. As I told my last remaining friend on earth since I’ve gotten this illness, “Wake up! It won’t happen anytime soon.” And their record on this serves as a good signpost.

AIDS (Acquired Immunodeficiency Syndrome) is but one good example. Have they really found the actual cause of it? If so, why hasn’t it led to a real treatment instead of a variety of treatments that merely buy patients a bit more time on earth? And why did the NIH (National Institutes of Health) fire a respected whistleblower when he let it be known that major problems existed within that particular area of the NIH despite our Congress trying, unsuccessfully, to intervene?

Jonathan M. Fishbein, M.D. alerted the public to problems with the AIDS research division and of their senior management. Both Democrats and Republicans knew he was going to be fired and objected. Said Senators Charles Grasseley (Republican of Iowa) and Max Baucus (Democrat of Montana), “Retaliation against an employee for reporting misconduct or voicing concerns is unacceptable, illegal and violates the Whistleblower Protection Act. Moreover, it would have a chilling effect on other NIH employees who might make truthful but critical comments about the NIH.” But the NIH proceeded to fire Dr. Fishbein in early July and refused to address the termination.

Dr. Fishbein was a 10-year expert of safe drug research before joining the NIH in 2003. He met with congressional investigators and he provided them with problems at the research level of the NIH. He told of how the NIH is a “troubled organization”, how managers have fought one another, used sexually explicit language, and how the physicians and PhDs have an ongoing rivalry making the workplace a hostile environment. The news media had already reported that an NIH AIDS study in Africa actually violated safety regulations, senior NIH managers were cruel to subordinates and researchers funded by the NIH used foster children to test AIDS drugs since the late 1980’s. When Dr. Fishbein issued a complaint against the deputy director of his division that outlined how the director had altered conclusions of a trial to conceal some serious deficiencies, he was then forced to report directly to the man who had worked on ways at work to fire him.

Dr. Fishbein was appointed Director of a newly created Office for Policy in Clinical Research Operations, Division of AIDS, National Institute for Allergy and Infectious Diseases. The head of that agency, Dr. Anthony Fauci, gave him an award for “outstanding contributions and efforts” just two years ago. The purpose of his appointment was to develop and standardize policies and procedure of conduct for clinical research to protect volunteer’s rights and to enforce accountability. He already had a good track record for accomplishments in this area in the private sector. He had been a Medical Staff Fellow at the Immunology Branch of the National Cancer Institute in 1990 and gone on to work with the Harvard Medical School. He also trained in general surgery for 2 years at Vanderbilt University Medical Center following work in Chicago and his graduation from Johns Hopkins University School of Medicine. Then he spent ten years doing that same job that he was appointed to do at the NIH in the private sector and in an admirable way.

The Institute of Medicine (IOM) began its review of a trial that Dr. Fishbein complained about in September of 2004. They refused to discuss scientific misconduct, cover-up, or reprisals and, when holding a public session, they allowed no dissenting speakers to testify. Are you still in favor of having the NIH attack your disease?

And then there are charitable agencies. The largest Multiple Sclerosis charity takes a huge chunk of their operating costs from private pharmaceutical companies. Where do you suppose their allegiance lies? And the largest national CFIDS charity gets about 1/3 or more of their funding from our government. How objective are they? Where does that leave you and me? I can’t speak for you, but I’m strongly supporting the National CFIDS Foundation (NCF) as they refuse to take funds with any prior commitments attached from anyone, government or otherwise. And they’re funding research with an open mind that they feel will lead to the actual cause of this disease and treatment by making sure all the already proven science meets the criteria for the new research. They’re what every charity should be---not bound by the almighty dollar but committed to the patient community. Just think how far these other diseases could be today if they had done what the NCF is doing! They’ve got what others lack and Winston Churchill described it best when he said, “Courage is the first of human qualities because it is the quality which guarantees all the others.”

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