Phoenix Rising Founder
A look back at the Pro’s and Con’s of Dr. Reeves Tenure at the CDC
THE PRO’s - despite the antagonism towards Dr. Reeves there were some pro’s to his program
A commitment to research – whatever you want to say about Dr. Reeves he does appear to have been in committed to researching chronic fatigue syndrome (ME/CFS). We can’t know what the internal milieu at the CDC was like but at least in public he presented the disease is a serious disorder, worthy of research.
Documenting economic losses and prevalence – CDC studies establishing high prevalence rates (Wichita study) and economic losses (approx. $10 billion/year) provided much needed documentation of this disease’s impact. CDC study findings that only about 20% of the people with this disease were diagnosed highlighted physician ignorance and demonstrated the need for more education -which the CDC to their credit attempted to do this.
At Least for a Time - Innovation - in the mid 2000’s following Dr. Vernon’s urging the Dr. Reeves essentially opened up the CDC’s database to several groups of outside researchers including a large group of data mining experts at CAMDA and gave them free rein at making sense of it. Dr. Reeves has been accused for years of thinking ME/CFS was a psychological disorder but this open-ended attempt to merge gene expression, gene polymorphism and laboratory and clinical data suggested he was open, at least at that point, to various interpretations of the disease.
In several ways the effort was a success. With its results filling the entire Pharmacogenomics Journal, the head of the CDC proclaimed that CDC was a legitimate and serious disorder. The exploration appeared to break new ground in immune and neuroendocrine areas yet it’s impact fizzled when Dr. Reeves, possibly because of budgetary constraints, did not continue with the work.
Outside Funding – The CDC’s funding of the Dubbo studies which examined the physiological changes as people with acute infectious onset came down with this disease demonstrated that Dr. Reeves was capable of funding worthy outside efforts.
Random Sampling - The CDC’s conclusion that expensive random sampling efforts were necessary to produce the ‘real’ face of CFS appears to have been flawed. The random sampling efforts seemed to have plucked out a sizable group of individuals with mild CFS, a significant number of which never saw a physician and few of whom could meet the criteria for CFS a few years later – facts that should have sent up red flags. Instead, the program based the much criticized Empirical Definition on this group. While missing the big picture, Dr. Reeves, for the most part, followed the logic of his study results impeccably; when his studies showed little difference between ‘CFS’ and ‘idiopathically fatigued” patients (almost CFS) he collapsed the domains.
His problems may have institutional more than anything else; the CDC’s emphasis on a statistically defining a vaguely defined disorder based on symptoms perhaps doomed it to finding the lowest common denominators of illness (eg cortisol) and precluded it from having the insights that an experienced doctor/researcher such as Dr. Peterson could produce.
Dr. Reeves started out with a disorder that few researchers other than him took seriously. Ironically even as his CDC prevalence and economic studies demonstrated it was a serious disorder, he seemed to take it less seriously in the end calling it ‘unwellness’ and referring to a broad range of factors (obesity, inactivity, , alcoholism, mood disorders, etc.) that might be able to spark it.
After his innovative lab chief, Dr. Vernon (the originator of the Pharmacogenomics project) departed, the program seemed more and more to be about less and less. It’s one recent foray into the immune system, for instance, examined only two factors. Its dismal performance at the Reno IACFS/ME meeting suggested the program had simply run out of ideas and Kim McCleary’s report that “the program had lost its mojo” seemed apt.
Lack of collaboration/innovation – the most devastating critique of the CDC’s program may have been its lack of innovation. The CDC had done good work in deepening the cortisol connection in ME/CFS but few, if any, researchers felt the mildly low cortisol readings were the answer. His willingness to invite researchers in during the Pharmacogenomics years suggested he could have an open mind but with his budget declining he turned inward, cutting off the Dubbo groups funding and producing a new definition of CFS almost by himself. Throughout his tenure he seemed to have little interest in outside efforts.
The CFIDS Association of America, the IACFS/ME and the CFSAC all took Dr. Reeves to task for his autocratic research style and his lack of collaboration during the 10 year review period. Dr. Reeves acknowledged some shortcomings in this area and promised to do better yet almost immediately turned down several opportunities to collaborate.
Dr. Reeves had to have his arm twisted to assist the Montoya group in their Valcyte trials. Simply getting him to appear at the Symposium on Viruses in CFS was an ordeal. The CDC showed no interest in the well documented natural killer cell dysfunction or RNase L dysfunction or reports of metabolic dysfunction or vascular dysfunction etc. Despite the progress made in brain imaging and the intriguing subsets suggested by Dr. Natelson the CDC has still never employed brain imaging in a published study.
It’s true that Dr. Reeves program never had the funds to follow up on all the research issues in ME/CFS but the program seemed to ignore any finding that did not directly come from within. One had the uneasy feeling that Dr. Reeves was determined to have the answer to ME/CFS come from inside his program or not at all. Instead of metabolic dysfunction – a possibly unique breakdown of the energy production process after exercise elucidated by the Pacific Fatigue lab- Dr. Reeves focused on metabolic syndrome – a general syndrome often associated with obesity. Instead of elucidating post-exertional malaise – a possibly unique response to exercise in CFS, Dr. Reeves focused on allostatic stress – a kind of overarching, general idea of the body’s breakdown in response to stress. With the research community demonstrating little interested in either – Dr. Reeves program failed an important test of relevance.
Reinventing the Wheel – It appeared that after embarking on the random sampling program Dr. Reeves didn’t trust the results of any other studies. Thus the CDC embarked on a series of very basic studies on sleep, orthostatic intolerance, and cognition and was due to incorporate CBT into its studies. By dwelling on more or less settled issues in CFS the CDC spent a good deal of time and money ploughing little new ground at all.
Indeed the program seemed to be getting more amorphous rather than more focused. Instead of an illness CFS had become a condition of ‘unwellness’; a strange word to refer to an illness with disability rates similar to multiple sclerosis. One wonders how CDC administrators justified spending the taxpayers money on a disease their chief investigator referred to as ‘unwellness’. In retrospect, it’s clear that they didn’t; after the payback funds ran out the Dr. Reeves CFS research program was cut and again; by 2010 the CDC was spending less on the disease than it had 10 years earlier – a sign that Dr. Reeves had failed to convince both the research community and his administrators of the worthiness of his efforts.
Empirical Definition – The inability to collaborate fully – to understand the pulse of the research community – appears to have lead to Dr. Reeves greatest mistake; the creation of the Empirical Definition. The definitions origins were sound; with the Fukuda definition used by all but loved by none it was clearly time to come up with a new definition. With questionnaires demarcating the kind and level of patients symptoms, functionality, fatigue, etc. the Empirical Definition was supposed to help the research community to develop subsets. Given the probable heterogeneity of the population this was an apt goal and at the international meetings researchers of all stripes came to agreement (mostly) on how to do this.
When the time came to produce the all-important criteria for inclusion into the disorder, however, Dr. Reeves turned inwards, using a small group of CDC personnel to create criteria that many believe turned the disease on its head; fatigue was discounted, emotional factors came into the mix for the first time and postexertional malaise was all but finished as a factor. Dr. Jason would later show that it was all too easy for patients with depression to be given a CFS diagnosis under the Empirical Definition.
Remarkably, even as Dr. Reeves was attempting to resign postexertional malaise to the dustbin of CFS history, two international groups; one under the aegis of the Canadian government (Canadian Consensus Criteria (CCC)) and one sponsored by the IACFS/ME (Pediatric Definition), were placing postexertional malaise front and center in their definitions. It was clear that the biggest CFS research effort on the planet was walking to a vastly different drumbeat than the research community at large. Indeed, seven years later it appears that the CDC may still be the only research group that ever used the new definition of CFS. Given its redefinition of the disease the failure of the ED presents the decidedly ugly possibility the CDC has engaged in almost a decade of tainted and potentially irrelevant research. Indeed, few of Dr. Reeves efforts would spark interest outside the CDC.
The Missing Subset Studies – As Dr. Reeves broadened the definition considerably – leading to a fourfold increase in prevalence estimates – it became incumbent on him to attempt to break it up into subsets yet the CDC made little effort to do so. An upcoming CDC effort to differentiate patients based on their brain imaging patterns and allocate treatments accordingly was intriguing but hardly pointed a way out of the disorder given the limited treatment options available.
The Stress Response Studies – Dr. Reeves assertion that stressful events early in life in CFS may have set the stage for a breakdown in the stress response and other systems later on had coherence and he was planning to investigate the matter further by looking at infectious and other traumatic events in childhood but his approach was somewhat retrograde. Except for Dr. Vernon’s model of stabilized suboptimal HPA axis functioning the CDC had few answers for the stress response problem other than CBT and apparently little interest in searching for more. The culmination of Dr. Reeves major research effort of the future seemed to be simply more of the same for ME/CFS patients.
Missed Opportunity – The CDC’s most intriguing research arena; its partnership with Emory University examining the role of pro-inflammatory cytokines in ME/CFS was an area of interest to several research groups including the Whittemore Peterson Institute and Dr. Klimas. It’s importance was borne out by the stunning finding in the Dubbo project that high cytokine levels early in an infection differentiated the patients who came down with ME/CFS following an infection from those that did not were. Cytokines, with their ability to produce many of the symptoms of this disorder, were one of the few issues that many parts of the research community could agree on yet Dr. Reeves apparently never contacted the WPI, cut off funding to the Dubbo project and over time the Emory project appeared to fizzle.
Funding was obviously a major issue for Dr. Reeves. After the payback period was over funding dropped so precipitously that it fell to 10 year lows. Inexplicably even as funding was dropping and Dr. Reeves was cutting off aid to the Dubbo Project and Dr. Klimas, the CFIDS Association documented what appeared to be enormous overpayments to Abt Associates – a group hired to run the CDC’s complex random sampling efforts. It’s unclear whether this apparently wasteful spending contributed to Dr. Reeve’s demise but it was ironic that Dr. Reeves, the whistleblower during the GAO scandal in the late 1990s, came in on the wings of one era of financial mismanagement and left on the wings of another.
In the end it may have been Dr. Reeves inability to do what every researcher needs to do; convince his funders that his work was worthy of further funding that ultimately ended his career at the CDC. The fact that his funding appeared to decline every year for the past several years suggested the CDC had less and less confidence in his work.
With the CDC in a massive reorganization scheme, and a new administration coming in, and with the professional ME/CFS research community calling for Dr. Reeves head during the 10 year evaluation, Dr. Reeves was probably a less secure ground than ever before.