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

Dr. Reeves, past CDC CFS chief, died on August 3rd

Posted by Cort Johnson

Dr. Reeves, past CDC CFS chief, died on August 2nd

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

Dr. Reeves proved to be a poor fit for the ME/CFS research and patient communities.

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.

 

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{ 70 comments… add one }

  • justinreilly August 9, 2012, 10:29 pm
    Ember
    justinreilly

    Ember, can you elaborate what you're asking pls?

    Like you, I see the CDC mission with respect to us as being that of making ME disappear. Among his mistakes, Dr. Reeves bungled the Reeves et al. (2005) definition to the extent that it “has found no support outside the CDC itself:”

    Others outside the CDC dismissed the new numbers as absurdly inflated and argued that the empiric criteria, like the Oxford criteria but unlike the 2003 Canadian case definition, blurred and expanded rather than clarified the disease boundaries.”

    Now Dr. Under has embarked upon her own definition, and early evidence indicates that she too will blur and expand the disease boundaries.

    Unfortunately, I have to challenge your statement that “the CLE produced by CDC and CAA and heavily pushed by CDC still says That 'CFIDS' and 'ME' are invalid names for 'CFS' because the first implies an immune dysfunction and the second implies neurological involvement and 'CFS' involves neither.” If you and I are referring to the same statement, that link has been removed now, and the current CDC position subsumes ME under CFS, seeming to expand and blur its boundaries.

    Happily for Dr. Unger, she has the support of the Coalition4MECFS should she decide that ME and CFS are one disease, with differences being matters only of degree. Dr. Unger has managed her public relations carefully, meeting with advocacy groups individually and putting out such statements as:

    Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward.

    I value Dr. Unger's competence only to the extent that I value her goals. Hence my question: “Wouldn't Dr. Reeves' program, implemented without the obvious mistakes, be worse for us?”

    Ember,
    You're right, I was mistaken. The link to the medscape CLE is dead. Great news! I haven't been following the news for the past few months, so I missed it. Maybe I should hold off commenting until I check such things. Thanks for catching it.

    The new CLE is much better on the definitions, but reading your comments, I too am concerned about her repositioning definitions as being solely based on study data. This is obviously the only way to negate the CCC and ICC. I think we all can bet they have some tricks up their sleeves in producing skewed, arbitrary and invalid data to animate their new "objective" definition(s).

    I do agree, especially now seeing the changed CLE that Unger is so far clearly better than Reeves was, though still really bad. let me read your posts again and think about it all.

  • GracieJ August 10, 2012, 4:15 am

    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.

  • GracieJ August 10, 2012, 4:45 am

    jimells, your explanation of the Peter Principle in relationship to the CDC made me laugh.

    Fukuda, CCC, ICC, abc… who cares? I do. I've just spent decades without family or friends on board with this issue. The next four — or five — decades would loom large indeed if I had not found the Fukuda information a few years back. It was a life boat of sanity to me. I no longer care if family or friends get it as long as there is a community out there that does.

  • CJB August 10, 2012, 4:57 am

    Welcome back, GracieJ:hug:

  • alex3619 August 10, 2012, 4:58 am
    Sing

    Andrew, after reading your post, an impression intensifies that Reeves fancied himself as another Signmud Freud–who ironically not only lead the grand new movement of psychoanalysis, but also profoundly erred about the cause of distress in his predominately female patients, who were seen as suffering from "hysteria". While these women had complained of being sexually abused by their fathers and male relatives, Freud made the politically astute switch from believing them to interpreting their symptoms as a repressed desire for sex with their fathers! The patriarchal, sexist culture of the day found that much easier to accept. Blame the victim. Those with low social value must be to blame rather than those with high social value. Freud's doctrinaire position harmed women and women's causes for decades afterwards. So, even though Freud is still held up grandly as "the father" of psychotherapy–someone to emulate–his legacy was shameful and harmful too.

    Hi Sing, its worse than that for Freud. Freud interpreted every little thing his female patients said as though it were connected to sexual abuse. In some cases it might have been, but from my reading in most cases he would twist and distort patient's words to suit his ideas.

    Freuds mistake was in constructing everything to suit his theory and not test his theory. I think modern psychobabble does the same – and that includes any theory about hysteria, which is a made-up unsubstantiated illness.

    Bye, Alex

  • Cort August 10, 2012, 2:12 pm
    Sing

    Andrew, after reading your post, an impression intensifies that Reeves fancied himself as another Signmud Freud–who ironically not only lead the grand new movement of psychoanalysis, but also profoundly erred about the cause of distress in his predominately female patients, who were seen as suffering from "hysteria". While these women had complained of being sexually abused by their fathers and male relatives, Freud made the politically astute switch from believing them to interpreting their symptoms as a repressed desire for sex with their fathers! The patriarchal, sexist culture of the day found that much easier to accept. Blame the victim. Those with low social value must be to blame rather than those with high social value. Freud's doctrinaire position harmed women and women's causes for decades afterwards. So, even though Freud is still held up grandly as "the father" of psychotherapy–someone to emulate–his legacy was shameful and harmful too.

    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.

  • Cort August 10, 2012, 2:15 pm

    This is interesting from his obituary

    The cause of the syndrome remains a mystery. Results are expected within the next few months from a major study designed to find out whether viruses or other infections somehow touch it off.

    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…

  • Sasha August 10, 2012, 2:29 pm
    Cort

    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?

  • alex3619 August 10, 2012, 3:06 pm

    On using spin, Public Relations and dubious psychiatric inuendos and diagnoses to create doubt, aside from Magical Medicine I am finding that Walker's Skewed is looking at this very issue. A lot of it is on MCS, I have not gotten to the part where he discusses ME yet. Bye, Alex

    PS I typed PR instead of Public Relations, had to change that for obvious reasons.:eek:

  • justinreilly August 10, 2012, 8:38 pm
    Sasha
    Cort

    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.

  • justinreilly August 10, 2012, 8:51 pm

    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.

  • justinreilly August 10, 2012, 9:04 pm
    GracieJ

    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?

  • justinreilly August 10, 2012, 9:05 pm

    Jimells, that last part was in response to you.

  • jimells August 10, 2012, 10:57 pm
    alex3619

    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?:mad:

  • alex3619 August 10, 2012, 11:18 pm

    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?

  • maverick76 August 11, 2012, 2:13 am

    He probably died peacefully in his sleep.

  • richvank August 11, 2012, 2:28 am
    Cort

    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

  • Ember August 11, 2012, 11:09 pm
    Cort

    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?

  • biophile August 12, 2012, 4:36 am

    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.

  • Lisa Simpson September 9, 2012, 4:45 pm

    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.