A strong and forceful personality who vowed to ‘be the last man standing’ in ME/CFS, Dr. William Reeves died at the age of 69 on August 2nd. The head of the most prominent chronic fatigue syndrome effort in the world for over ten years, no one made a bigger difference in how this disorder is viewed and treated.
Reeves has been protrayed as a behaviorist but the truth was more complex than that. With early studies focusing on HHV6, immune responses, endogenous retroviruses, mycoplasma and gene expression Reeves focused mostly on pathophysiological mechanisms. The 2005 Pharmacogenomics project in 2005 was a bold and innovative attempt to squash as much data together as possible and its open-ended nature suggested Reeves was not weeded to a particular interpretation of ME/CFS. His funding of the Dubbo project on post-infectious illness provided the ME/CFS research community with several important papers.
Later in his career, however, Reeves began to focus on more behavioral issues and studies focusing on psychiatric co-morbidity, early life stress and coping issues began to pop up. Over the 20 years or so the CFS program was in existence the CDC had never commissioned a CBT study but at the end of his term it finally did.
Despite Reeves long tenure as CFS Research Chief his citations are fairly light. A papillomavirus researcher, pre-CFS, after his innovative lab chief, Dr. Suzanne Vernon left, Reeves seemed a bit out of his depth and the largest CFS research program in the world became strangely irrelevant. The CDC’s focus on allostatic stress and metabolic syndrome – two issues they introduced to the research world – and those issues fizzled out. By the time of the 2009 International ME/CFS Conference in Reno the CDC program had little to offer, the ‘mojo’ as Kim McCleary put it, was gone.
Referred to as the ‘dictator’ within the CDC, Reeves commitment to going it alone ended up costing him and the program. His decision to produce the criteria for the Empirical Definition in-house left the program isolated and out of touch. Boycotted by the research community, the ED proved to be an anchor around the CDC’s and Dr. Reeves neck as the program charged ahead with a definition no one else was using.
With his forceful personality Reeves could evoke hostility from his peers. His colleagues on the CFSAC committee immediately voted for his ouster soon after he stepped down from it. By the time she left to join the CFIDS Association, Dr. Reeves former lab Dr. Suzanne Vernon was hardly on speaking terms with him and soon afterwards the CFIDS Association’s investigation suggested a program that had come off the rails both financially and scientifically. Privately some researchers spoke of a ‘rogue’ research effort and in 2010 Reeves was unexpectedly and without explanation removed from the CFS program.
Reeves may not have focused on behavioral issues in his research work but the CDC Toolkit revealed a man firmly committed to a simplistic interpretation of ME/CFS treatment. With the Toolkit and its limited palette of treatments options the richness of this complex disorder was lost. While Reeves epidemiological studies highlighted a severe and often disabling disorder, his Toolkit suggested the opposite – a syndrome that could be managed simply by CBT, GET and sleep hygiene. It appeared over time that his stance on the disorder softened; the focus on high rates of disability was lost in his insistence that ME/CFS was a disorder of ‘unwellness’ - not a disease at all.
In the end the biggest problem with Dr. Reeves era at the CDC was simply that it was not successful. Reeves could take credit for several important economic loss studies but ME/CFS’s ongoing diagnostic issues worsened during his tenure and one has only to look at major medical websites to see the devastating effect the CDC’s Toolkit has had on treatment options for ME/CFS patients.
Stimulating research leads were few and far between and the number of missed research opportunities was large. Reeves actually began the era of big data mining efforts but the CDC effort faltered and CDC researchers such as Gordon Broderick moved onwards and thrived. The CDC missed the boat completely on natural killer cells and the repeat exercise studies.
Poor support from the top didn’t help. Tasked with exploring the epidemiology, causes, economic losses and providing physician education on a small budget Reeves would, not surprisingly, have trouble doing any of them well. At one point he noted that accounting for inflation his budget had eroded by 25% over the past decade. His small budget and long task list called for collaboration, collaboration, collaboration but his list of collaborative projects was short.
Reeves departure sparked a turnaround in the CFS program with Dr. Unger taking a lead on the NIH/CDS/ME/CFS research community CASA project, producing a large-scale ME/CFS physician study and her CME projects featuring prominent ME/CFS doctors.
Reeves had his successes; the Pharmacogenomics project lead to the head of the CDC, no less, publicly declaring ME/CFS was a legitimate and serious disorder and his economic loss studies are cited frequently. In the end, though, Reeves and ME/CFS was like trying to fit a square peg into a round hole; it just didn’t work.
- Dig Deeper: A Look Back at Dr. Reeves CDC – reflecting on Dr. Reeves when he was removed from the CFS program at in 2010
- Check out Phoenix Rising’s Chronic Fatigue Syndrome CDC Resource Center
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