- Last Updated: 19 November 2015 19 November 2015
ME/CFS breakthroughs—or maybe not
In September, 1990, Drs. Elaine DeFreitas, David Bell, and Paul Cheney were pictured on the cover of The CFIDS Chronicle because they were on the forefront of ME/CFS research at the time. People believed that Dr. DeFreitas had found a retrovirus associated with the illness and her work was promoted as a research breakthrough.
Drs. Bell and Cheney, each having found themselves in the midst of an epidemic outbreak, began treating numbers of their patients.These doctors were well known and lent credibility to the illness.
Dr. Hyde, with his forensic background, explained that researching the cause of a virus in an outbreak can only be done if you go to the epidemic and look for viruses in everyone. Otherwise, there is no way to tell what caused an outbreak because healthy folks carry around so many viruses that don’t make them ill―scientifically, this research did not have the significance implied.
Though it proved to be quite challenging, Dr. Hyde was determined to find out how research funds earmarked for ME/CFS had been spent by the National Institutes of Health (NIH), Bethesda, MD. After many calls to NIH, he was told he would have to call each department individually to inquire where the money was directed.
Much of it went to a study on alcoholics who were thought to be fatigued. More was spent on cancer patients who were thought to be fatigued. The misspending of CFS research funds also occurred at the CDC, a circumstance that was eventually made public by a whistle-blower, the head of the CFS research programs at the CDC.
Dr. Hyde stated that he felt Dr. Stephen Straus, who headed up the ME/CFS research at NIH, was “the bane of the problem”. Dr. Hyde then laid out his case for his statement explaining that in a time-line, the term CFS was first employed by Dr. Straus in 1986. In 1987, Straus believed CFS was caused by Epstein Barr Virus (EBV). In 1988 his term CFS was used to label the new CFS Working Case Definition. Keep in mind that ME was an established illness in other parts of the world. Dr. Straus maintained a very poor attitude towards ME/CFS and given his position at the NIH, this had a negative outcome on patients and research for many years.
Dr. Hyde then went on to discuss how some players in the ME/CFS field were just making money on unproven lab tests, as was corroborated with the downfall of the XMRV theory. He discussed how researchers, laboratories and pharmaceutical companies would put more effort into a project if it proved money-making as in the case of utilizing something with a patent on it. ME/CFS progress suffers when research is steered by power or towards profit or when results are overplayed.