CDC ME/CFS Chief, Dr. William Reeves Passes: A Look Back

[caption id="attachment_12979" align="alignright" width="214"] Dr. Reeves, past CDC CFS chief, died on August 2nd[/caption]

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.
'The Dictator'


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.
The Behaviorist


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.
Few Successes


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


[caption id="attachment_12980" align="alignright" width="300"] Dr. Reeves proved to be a poor fit for the ME/CFS research and patient communities.[/caption]

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
  

Support Phoenix Rising​

One Time Donation ​

​

Recurring Monthly Donations ​

(Why not support Phoenix Rising with a $5 , $10, $15, $20 or more monthly 'subscription'. Click on the Subscribe button and look on the right hand side of the page for options )​

View the Post on the Blog

 

I wonder what this is...Its too early for the CFI Lipkin study. It's clearly not the XMRV study..It could be the BSRI CDC study. The CAA has a similar study underway...

I thought the Lipkin study had been expected for June 30 so isn't that overdue?

Sasha,
I think Cort was saying That it would be too early for the CFI Lipkin study which I believe is the one looking for novel pathogens in ME. The Lipkin HGRV/XMRV study is overdue, yes and they keep saying it'll be out in a few more weeks or months and then it gets delayed again.

 

Sasha,
I think Cort was saying That it would be too early for the CFI Lipkin study which I believe is the one looking for novel pathogens in ME. The Lipkin HGRV/XMRV study is overdue, yes and they keep saying it'll be out in a few more weeks or months and then it gets delayed again.

 

As I follow these threads, one thought keeps coming back to me again and again: Are we seeing a pandemic big enough and bad enough that if fully recognized and proven, it would break the economic back of nations already on the brink? It has already been noted what a takedown like that would do to Big Pharma. Let a few million people die with their relatives believing they are crazy and lazy, cover up the real history, then get on with the same social experiments again in a few decades. Wouldn't be the first time in history. Read your Marx lately?

Cover-up fits.

I don't think it is too farfetched to believe that parts of this are coming from botched germ warfare experiments. Nor is it too farfetched to think it is coming from deliberate experiments. A huge population makes great guinea pigs. Think me silly and conspiracy paranoid. Moving on to the toxic load in the environment which is totally real... who really knows what full combination of factors are taking us down and wiping out our lives one decade at a time?

I feel completely frustrated for Drs. Cheney and Peterson and others for their efforts to bring this to light. In my mind, they are the heroes in this story, and I hope history sees them that way. They are the Semmelweis figures of our day. Bravo to the long list of doctors and researchers whose names I see over and over as I catch up after 20 years of drugged brain fog.

As for Reeves, I didn't know him by name until now. All I knew was that every time the news had information and quotes from the CDC about this non-illness that was destroying my own life, it was not good news. (During the 90s, listening to my first husband derisively say, "See??") I do feel anger now, of course. It is anger I want to direct as I get the background information into place better, and can begin writing halfway lucid, halfway intelligent letters to people who could shake this up politically. I do not want to see another Reeves in this story ever again. Yeah, yeah, I know... likely we will see several.

Personally, I do not see a remedy or cure coming, one size fits all. But recognition, symptoms management and quality of life issues could be addressed in ways that would give us back our dignity and physical comfort.

Our first line of defense is personal responsibility.

Gracie,

I agree on all your points.

In particular, I wouldn't care about the name "CFS" if it didn't cause and compound so many problems, so I don't think it's nit picking. And I wouldn't care what they called it either if they were going to do bona fide science to figure it out, but they're not, that's their whole plan, not just an accident.

So to make them do bona fide science and to get some measure of relief from the every day abuse, changing the name (ME is the best candidate now) is critical, and it is something we can do right now ourselves at no cost.

What else can we do that takes no effort or money that will lead to better understanding, science and treatment?

 

Jimells, that last part was in response to you.

 

I think modern psychobabble does the same - and that includes any theory about hysteria, which is a made-up unsubstantiated illness.

I still see physician intake forms that list "nervous breakdown" -- what the H does that mean, anyway? Is that in the DSM?

 

Nervous breakdown is an old term - I am not sure what it really means either. Just more babble I think - this patient can't cope, lets call that a nervous breakdown. The question is, can't cope with what?

 

He probably died peacefully in his sleep.

 

I think Reeves big mistake - the decision to use random sampling to essentially define ME/CFS - lead to many of his later problems. Once he did that he couldn't find anything positive because the group was so amorphous - so he naturally tended to label this disorder as 'unwellness' and more of a behavioral problem than anything and began doing studies like the immune study -which looked at only 3 factors.

He should have done the opposite; he should have concentrated on patients in ME/CFS doctors clinics and tried to find subsets within that group. If he had done that I think he would have found some really interesting stuff.

Hi, Cort.

I agree with you on this point.

For what it's worth, the GD-MCB hypothesis grew out of interactions in the internet groups with people who actually have ME/CFS, starting with detailed questionnaires about their histories to figure out what the causes are, and constantly coming back to their symptoms to see if these could be explained by the proposed biochemical model for the pathophysiology.

This effort resulted in proposing that there is a variety of root causes, but that there is a common core to the pathophysiology. The common core is what makes it an identifiable disorder, and the variety of causes matches what is found in this population.

The thing that pulls these two disparate-seeming concepts together is the body's known nonspecific response mechanisms to the whole variety of stressors (a la Hans Selye), and the fact that they all end up placing demands on glutathione and producing the same chronic vicious circle mechanism.

In a situation as amorphous as this one is, a "germ's-eye view" is more productive than an overflight.

Best regards,

Rich

 

He should have done the opposite; he should have concentrated on patients in ME/CFS doctors clinics and tried to find subsets within that group. If he had done that I think he would have found some really interesting stuff.

Dr. Reeves had another option, Cort, and so does Dr. Unger. Shortly after the Canadian government allowed a panel of experts to base their criteria on consensus clinical opinion, Dr. Reeves chose instead to operationalize the Fukuda definition. Recently Dr. Levine suggested that CFSAC should consider developing an international, consensus-based, clinical case definition. Dr. Rose added that starting with the CCC, which already separates ME from depression, would enable us to start getting some meaningful research.

For the CDC to insist on its “data driven” process is for the CDC to maintain its control, instead of allowing clinicians to bring their own data and expertise to bear. The CDC is asking clinicians to provide CFS data, but it is not allowing them to specify which case definition they've used. CFS is defined in the US by Reeves (2005) and Fukuda (1994). So if the CDC asks for 400 CFS patients, then that's likely what they'll get. Their data will be driven by their question. Subsequent to Dr. Fletcher's telling the CDC that Dr. Klimas uses the CCC to identify her patients, the CDC gave notice of a follow-on sole-source contract that apparently excludes her.

According to Dr. Unger, “The question being asked over and over is, how do the patients differ in people’s practices.... Is that why the findings in the laboratory are not always translatable?” To answer that question, the CDC plans to define the heterogeneous syndrome that it calls CFS by first gathering data on pre-existing domains and then utilizing unspecified instruments (subject to there being any good ones) to establish severity cut-offs. Reeves et al. (2005) similarly used specific cut-off values on the SF-36, MFI and Symptom Inventory to operationalize Fukuda and identified groups (CFS, ISF and Not Ill) by severity, using cluster analysis. Consistent with Dr. Unger's question, Reeves et al. (2005) purports to “help to clarify the extent to which patients from different referral clinics are similar (or dissimilar).”

Dr. Unger has embraced both Dr. Reeves' methodology and his goals. But she hasn't committed to any methodology for identifying subsets. Fukuda et al. (1994) states, “The central issue in chronic fatigue syndrome research is whether the chronic fatigue syndrome or any subset of it is a pathologically discrete entity, as opposed to a debilitating but nonspecific condition shared by many different entities.” Without committing to a test-retest protocol, how will Dr. Unger address this question?” She writes, “We are planning to collect standardized data on all the domains of illness included in the Canadian Consensus Criteria of CFS/ME (sic), the 1994 CFS definition and the newly proposed International ME definition.” Will Dr. Unger measure PENE and the associated neurological, immune and energy metabolism/transport symptom clusters of ME?

Fukuda et al. (1994) also states, “We support changing the name when more is known about the underlying pathophysiologic process or processes associated with the chronic fatigue syndrome and chronic fatigue.” The ICC incorporates what is known about the underlying pathophysiology of ME. Will Dr. Unger's definition do the same?

 

So it took the CDC about 25 years to start collecting standardized data on the clinical experiences of physicians and ME/CFS patients? Maybe we should take 25 years to pay our taxes.

 

No amount of paltry achievements can make up for the harm this man did. He purposefully and determinedly stymied meaningful research into what he undoubtedly knew was a serious disease. Millions of lives have been lost one way or another as a result of his actions. He achieved nothing of note in his long tenure, he helped no one. The harm he did is incalculable. That's the truth of it.