Reeves' presentation at the May 27 CFSAC Meeting

Discussion in 'Fibromyalgia Main Forum' started by Khalyal, May 27, 2009.

  1. Khalyal

    Khalyal New Member

    Alternately, you can go to, click blogs, then click editor's blog.

    I was able to catch a small portion of the CFSAC meeting on May 27. Most interestingly, I was able to hear Dr. Reeves’ presentation in full, and the follow-up testimony of several CFS advocates/sufferers. Following is what I heard of Reeves' presentation, with actual quotes in “quotation marks“, and my own asides, thoughts and comments in (parentheses).

    Dr. Reeves’ presentation lasted approximately 40 minutes. He started out by saying he would give us an update on the results of the peer review and moving forward. He said that he would discuss the draft of the 5 year strategic plan, calling it a “complex topic”. He said he would explain the current CFS program, discuss the logic model that’s in the handout, go through the current version of the draft, putting it into context with the peer review and stakeholders meeting, and the recommendations that this committee has made.

    (The first important thing to note is in regards to the external peer review panel. The CFS Advisory Committee recommended the peer review idea, and actually recommended some potential members. The CDC chose 5 members, one of whom is Peter White, a U.K. psychiatrist. This is important, because the UK has formed its national health plan response to CFS based on the work of Simon Wessely, Peter White, et al., who have totally psychologized the disease. If you have watched Reeves over the years, you can see that he has steadily been steering the U.S. response to CFS in the same direction - It’s All In Your Head.)

    Dr. Reeves said the the “program objective is to devise control and prevention strategies, and improve the quality of life of sufferers. We are not NIH, we are a complementary agency.”

    He went on to say that the control strategy model is rather simple - that there is the population of the world, and in that population some have CFS. Among those who have CFS, there is more than one subtype. “We need to get these people to interventions. Their illnesses need to be evaluated and managed. We must take subtypes into account. We must decrease the burden CFS poses on the population, decrease impairment, and decrease economic impact.”

    He said that the CDC needs to address the barriers to access to healthcare. But on the other hand, patients actually have to utilize that healthcare. Thirdly, patients have to receive appropriate care.

    “What do we think CFS is?” Dr. Reeves asked. “It’s a complex illness, with alterations in complex homeostatic systems. It’s not the result of a single mutation or a single environmental factor. It comes from a combination of many factors: genetics, gender, stressors, immune stressors all interact.”

    Reeves then showed a slide with a diagram. He said, “This is our current model. You see the brain in the middle. Around the brain, stress is involved, traumatic childhood stressors, allostatic load maladaptation to stressors, genes interact with one’s reaction to stress, autonomic nervous system, orthostatic intolerance, immune activation..”

    He went on to say that all of these things go in both directions (meaning that these things contribute to causing CFS, but CFS contributes to all of these things.) He then mentioned that acute and latent infections that may reactivate with various stressors, and that diet and lifestyle are important, again in both directions.

    (Notice that the very first things he mentions in his model are childhood trauma and allostatic stress loads. In other words, we do not know how to handle stress. The third thing he mentions is genetics, but notice how he ties genetics to stress - not to susceptibility to a disease. This is all leading up to psychosomatizing the disease completely, a path he has been on for many years. But wait…there‘s more…)

    Dr. Reeves moved on to discuss the CDC’s CFS research strategy.

    He said that population studies “let us look at risk factors, the clinical course of illness, to be able to tease out subtypes. We measure biomarkers in our population studies, as well as knowledge, attitudes, and beliefs.”

    (This leads us straight to the “improper sickness behavior” component of the “allostatic stress load” theory.)

    He said that the goals are the same in clinical studies. As far as laboratory studies go, he said that “nothing we do doesn’t have a lab component.”

    Dr. Reeves said that the goal of education activities is that “we have to change attitudes, knowledge, beliefs, and treatment patterns.”

    Next, Dr. Reeves wanted to discuss the Logic Model that his team has developed. He said that the reason for a logic model is that it ‘allows you to put strategy and tactics into perspective, outline goal and measure success.”

    In the logic model, there are inputs, outputs, and outcomes. He discussed them as follows:
    Outcomes: “We want to reduce population morbidity and improve quality of life for patients.”

    Inputs: “These are activities, what we actually do. It is not a trivial illness. Congress realizes and appropriates money to study it. Advocates, academia and pharma, these are people we can partner with to do it.”

    Outputs: “Knowing the burden of the disease, knowing the “knowledge attitudes and beliefs” of sick people, their families, physicians, ets., education, the cfs website…”

    “The only outputs we really haven't gotten to yet is therapeutic targets.”

    Dr. Reeves went on to discuss CFS publications. He said that there are 136 peer review publications, 4 manuscripts in press, 10 manuscripts in review. “This is how science is done“, says he. “Who reads them and who have they influenced?” he asked. He said that there are about 3000 or so publications on Pubmed on CFS. About 1600 in other journals reviewed by ISI. He noted that the “only group that has more in the world is the United Kingdom.”

    Dr. Reeves then moved on to the Case Definition.
    He said that the newly defined illness was first defined in 1988 (Holmes)
    It was then redefined in 1994, and this definition is currently the international standard. (Fukuda).
    He says this is the reference standard, but has it problems. Because of that, he says, an international group worked toward streamlining this in 2000, and it took 3 years to streamline the 1994 definition into an operational guideline. (This is how we got what is being referred to as the “Reeves empirical”, which basically eliminates all of the very sickest of us, and the original Incline Village cohort….and yet includes people with mood disorders only.)

    Reeves said that the revision recommends standardized instrumentation to measure frequency, occurrence, and duration of symptoms. (Doctors are having a hard time actually obtaining these instruments, or at least, Dr. Bell is, as he complained to the CDC).

    Dr. Reeves then stated that provider knowledge, attitude, and belief is higher than 10 years ago.

    Dr. Reeves moved on briefly to the peer review executive summary. He said that the CDC is using their comments to frame the program, but that the bottom line was that the peers liked the current program and had endorsed the 5 year strategy.

    He did make a comment on the criticism of the 2005 publication of operationalizing the 1994 Fukuda definition of CFS. His comment was that the CDC leads the world in defining this illness, and that it was not an attempt to rewrite the 1994 Fukuda, just an attempt to operationalize it.

    Clinical guidelines was the next topic.

    Dr. Reeves said that the biggest flaw in studies is that in cross-sectional studies, patients have only been sick 5 years. He said that the CDC was developing collaboration with the Mayo Clinic to use Rochester epidemiology, because local people use the Mayo Clinic from birth to death. That would give complete birth to death medical records on CFS patients, so that researchers could look back to see what happened to some of these people as kids, what kind of traumas they may have had, and what happens to the clinical course when they get it and go on. (Again the emphasis on the inability to process trauma).

    Dr. Reeves then brought up the April stakeholder meeting - he said that “I’m not trying to be funny, but the response was very impressive, given problems with travel/economy/illness.”

    He noted that 8 people testified in person, and 30-something testified by phone. He said that leading up to that meeting and subsequently, up until the present day, he had received around 350 or so emailed or written comments, many from some of the same people who testified. He said that this does make it move difficult to say that 90 percent of stakeholders feel this way or that way, because it’s all one person, basically.

    He said that some of the issues that the stakeholders brought up were that:
    Communications with the CDC had not been optimal
    The case definition was a high concern
    Pathology, biomarkers and sub typing, infectious agents, needed to be researched
    Management and treatment of the disease needed to be addressed
    Collaboration and data sharing needed vast improvement.

    Reeves noted that these were the same types of comments that have been raised by the CFSAC, physicians, etc., so fair representation of concerns were addressed.

    Next, Reeves moved on to the topic of “moderators”, or things outside of what one can control, whether they be good or bad. First he mentioned some “good moderators”:
    He said that funding had been quite available to the CFS research program.
    He said that credibility is increasing, making research easier.
    He said that from 1992 to 1999, funding was only 3 to 4 million per year, so they only focused on a few things, but that from 2000 to 2005, due to payback funding, “we were able to do the Wichita study, collaborate with the CFIDS Association of America, do a pilot national survey, funded one of the best post-infectious disease studies, and cytokine studies”. He went on.

    He said that now that payback is over, funding is decreased again.

    The CDC has been doing a cross sectional study in Georgia, and have been following the CFS population there. There were a series of workshops, he said, from 2000 to 2002, studies that show that the CFS construct is real, internationally. Across the board, he says, in every country, the CFS construct is “Fatigue plus 8 magic symptoms, so the empiric underpinning is good”.

    Then Reeves talked about “hindering moderators” or, as he put it, “what can one do with what one has. Economics is a problem for everyone”. He said that from 2000 to 2005, during payback, the budget averaged at about 7 million a year, but now we are back to abut 3 to 4 million a year. He said that this represents a real 50 percent decrease, but then you have to factor in inflation.

    Also, he noted, “we need to get more involved in more collaborations, working with others. Not just giving them money. We need to work together toward common goals with pharma, academia…” (I read this as, we want our hand in all research being done by anyone so we can control it)

    Dr. Reeves then discussed the CDC’s Vision:
    He said that he believed that the CDC had successfully focused on obtaining baseline information. So in moving forward, the strategy is to focus on 4 goals:
    (This is the 5 year plan)

    1. Refine understanding of etiologic pathways to improve diagnosis and identify therapeutic targets. Reeves said that “Psychosocial, clinical and biological markers must be identified.” (note that the first thing is psychosocial) He also noted that we must identify risk factors, and used major depression disorder as “an extremely good example of this,another complex illness with subsets.”

    2. Improve clinical management of CFS patients by providing evidence-based education materials that address evaluation and clinical management of CFS

    3. Clinical intervention trials

    4. Move CFS into the mainstream of public health concerns.

    (I had to take a break and missed a little bit)

    Finally, Dr. Reeves discussed upcoming activities, including an international workshop on clinical management. He noted that the “UK already has this integrated into their healthcare system”. (You bet they, do right in the psychiatric sector, with CBT and GET as the therapies)

    Reeves then mentioned that there is a CBT/GET trial in the process of being planned in Macon with the collaboration of the “UK group and the Mayo Clinic”. (That is scary. As Mary Schweitzer points out in subsequent testimony, Peter White, proponent of CBT/GET and representative of the UK group, has stated that CFS is caused by too much rest, leading to debilitation, and that no medical treatment is necessary or appropriate: the only treatments should be Cognitive Behavior Therapy and Graded Exercise Therapy)

    ~Khaly Castle

    [This Message was Edited on 05/28/2009]
    [This Message was Edited on 05/28/2009]
  2. skeptik2

    skeptik2 Member

    Very good! I am impressed to the max.

    You did an excellent job of summarizing this, and I thank you from the bottom of my heart.

    I would like to ask a favor: could you add this to the post that lists the speakers and patients who spoke?

    It would be wonderful to have it on that thread, also!

    Those of us who are really interested in the CDC's terribe, frightening "Plan" to psychologize this devastating illess can come here and get the facts and make our rebuttals; others can be exposed to it on the Posts about the conference's submitted papers and the one with reactions to the speakers.
    Quayman and Forebearance, I believe. Please check it out.

    Again, thank you so much for this wonderful work you did summarizing Dr. Evil's deeds!

  3. outofstep

    outofstep Member

    I was really concerned that things were going in this direction-first with his psych publications/Emory gig and then when Daschle based his healthcare plan on the NHS. Today he pretty much put his cards on the table.

    The only way that he is able to pursue this is by kicking out the chronic viral/immune dysfunction subset and by refusing to research viruses with the sorry excuse that they don't have the money for that in their division.

    It's maddening that he is defrauding the public-taking tax money to study one disease and then looking at something else. It looks like we are going to have to get Congress involved, or pursue a class action suit.

    Khalyal thanks for writing this up and posting it.
  4. Khalyal

    Khalyal New Member

    I posted it on Quayman's thread, I hope that was the right one!

  5. Khalyal

    Khalyal New Member

    Reeves doesn't want to study viruses. Check out the following email exchange from 2008 between Reeves and the HHV6 Foundation, in the next post:

  6. Khalyal

    Khalyal New Member

    This is an email exchange between Bill Reeves (CDC), Kristin Loomis (HHV-6 Foundation) and Dharam Ablashi (HHV-6 Foundation). The email exchange sheds a light on the refusal by Reeves/CDC to engage with outside research:

    Date: Thu, 7 May 2009 05:18:34 -0500
    Reply-To: Tate Mitchell <[log in to unmask]>
    Sender: ME/CFS and Fibromyalgia Information Exchange Forum
    <[log in to unmask]>
    From: Tate Mitchell <[log in to unmask]>
    Subject: NOT: Email exchange on the subject of CDC not engaging with
    outside researchers(reformatted)
    Content-Type: text/plain; charset=windows-1252

    Re-formatted for easier reading- Can now be read from top to bottom. ***********************************************

    From: Kristin Loomis [mailto:[log in to unmask]]
    Sent: Wednesday, February 13, 2008 11:54 AM
    To: Reeves, William C. (CDC/CCID/NCZVED)
    Cc: Dharam Ablashi
    Subject: Mini-conference on "Viruses & CFS"

    Dr. Reeves, I am writing to invite you to participate in a mini-conference we are organizing on "Viruses in CFS" on June 22-23rd in Baltimore, Maryland, just after the 6th International Conference on HHV-6 & 7. We would also be honored if you would serve on the advisory committee.

    A draft list of speakers (incomplete) is as follows-

    John Chia, MD, EV Med Research, Lomita, CA, USA (enterovirus)
    Jose G. Montoya, MD, Stanford University, USA (HHV-6 & EBV) Andrew Lloyd, MD, UNSW School of Medical Sciences (post viral fatigue)
    Anthony Komaroff, MD, Harvard Medical School, Boston, USA (infections in CFS overview)
    Brigitte Huber, PhD, Tufts University, Boston, MA, USA (retrovirus) Keizo Tomanga, PhD, DVM, Osaka University, Japan (borna virus) Nancy Klimas, MD, University of Miami, Florida, USA (immune markers in viral infections vs CFS)
    Kazuhiro Kondo, MD, PhD, Jikei University School of Medicine, Tokyo, Japan (HHV-6 & 7)
    Ron Glaser, PhD, Ohio State University Medical Center, Columbus, Ohio, USA (EBV) J
    onthan Kerr, MD, St. George’s, University of London, UK (parvovirus, gene expression)
    Dan Peterson, MD, Sierra Internal Medicine, Incline Village, USA (novel viruses – NCI study)
    Birgitta Evengard, MD, PhD, Umeå University, Umeå, Sweden (viral markers)

    In addition, we hope you will attend at least the third day of the main conference on HHV-6 & 7, which will be devoted exclusively to HHV-6 in CNS disease. As you may know, there have been a growing number of papers implicating HHV-6 in encephalitis, status epilepticus, mesial temporal lobe epilepsy and MS.

    Jacobson at the NINDS found HHV-6B is in two thirds of brain resections from patients with mesial temporal lobe epilepsy and suggests that smoldering virus can cause seizures by altering glutamate transport. What is especially interesting: although the copy numbers are quite high in the brain tissue, they are barely perceptible in the CSF and plasma. Unless one has an extremely sensitive HHV-6 assay, it is not possible to detect in the spinal fluid or plasma in spite of a clearly pathogenic disease process in the temporal lobes. Those papers are attached. I have highlighted some of the recent papers on HHV-6 in CNS disease below.

    HHV-6 & Schizophrenia. HHV-6 has been implicated as a trigger in schizophrenia by a large study done by Johns Hopkins and the US military. HHV-6, six to 12 months before diagnosis. (Niebuhr 2007 attached)

    HHV-6 & post-transplant acute limbic encephalitis (PALE). A study at Harvard has implicated HHV-6 in this form of limbic encephalitis. (Seely 2007 attached)

    HHV-6 & rhomboencephalitis. A paper from George Washington University suggests that HHV-6 is associated with condition, characterized by seizures, ataxia, encephalopathy and opsoclonus-myoclonus. HHV-6A was found in two of the three cases. (Crawford 2007 attached)

    HHV-6 & CFS. Anthony Komaroff wrote an excellent review on the role of HHV-6 in CFS. The studies that used an assay that can differentiate between active and latent disease all found a positive association. (Komaroff 2006) Montoya’s paper with pilot data on treating HHV-6/EBV low grade infections in CFS patients with Valcyte (Kogelnik 2006).

    HHV-6 & Amnesia. Four patients with HHV-6 associated anterograde amnesia after stem cell transplantation were reported. Three other case reports were published in the past few years and amnesia is also a symptom of the PALE syndrome described above. (Gorniak 2006) HHV-6B & Epilepsy/ Status Epilepticus. A 200 patient multi-center study found that primary infection causes 35-40% of SE cases. There will be a major paper out on this soon.

    HHV-6 & MS. A group in Spain with a sensitive PCR assay has shown consistently higher rates of HHV-6A in patients with MS than in controls. (Alvarex Lafuente 2006, 2005) They also show a gene interaction with MHC2TA. (Martinez 2007)

    At your convenience, we would love to get your input on a study we are doing of monozygotic twins discordant for CFS. We are testing these samples for a number of viruses as well as 30+ cytokines at Stanford.

    Best regards, Kristin Loomis Executive Director HHV-6 Foundation 277 San Ysidro Road Santa Barbara, CA 805-969-1174 805-695-8465 Fax

    On 2/13/08 3:20 PM, "Reeves, William C. (CDC/CCID/NCZVED)" <[log in to unmask]> wrote:

    Thank you very much for your kind invitation to participate in the conference and serve on the advisory committee. The HHV-6/7 field is certainly moving forward unusually rapidly and you have gathered together an unusually talented group of participants. Unfortunately, late June is particularly bad for me and I am committed to other activities for all of the month.

    From: Dharam Ablashi [mailto:[log in to unmask]]
    Sent: Wednesday, February 20, 2008 4:50 PM
    To: Reeves, William C. (CDC/CCID/NCZVED)
    Cc: House, Joann (CDC/CCID/NCZVED); Kristin Loomis
    Subject: Re: Mini-conference on "Viruses & CFS"

    Dear Bill,

    Thank you for your response to the email from Kristin Loomis. Since you are not able to attend, would you be able to send someone from your group to represent the CDC or present new data relating to viral infections in CFS? Also, we would still love to have you on the advisory committee and would like to hear any suggestions you might have on the program.

    Although direct evidence may be lacking in the peripheral blood, the evidence in tissues deserves further investigation. We have been in touch with a number of investigators who have sent slides from past upper endoscopies of CFS patients and found them positive for either HHV-6 or enterovirus or both, while negative for EBV and several other pathogens. In one case, a CFS patient’s gall bladder also turned up a strong positive for HHV-6 infection. We would be happy to send you photographs if you are interested. Alternatively, we could send unstained slides from a few of these CFS biopsies and the monoclonal antibodies if you would like to look at these tissue samples at the CDC. Or, if you have access to your own biopsy samples, you could send slides directly Georgetown at the address below.

    Would the CDC support a small study to do immunohistochemistry by in-situ PCR on 10-20 CFS samples and 10-20 controls at Georgetown? If yes we would be delighted to help organize this for you. We would appreciate a chance to discuss this with you and your team when convenient.

    Finally, would you be willing to assist us in making a request from the CDC for conference support for this mini-conference? You have been generous in providing grants to IACFS conferences in the past, providing grants of at least $25,000.

    We would greatly appreciate your help as the conference will be quite expensive to put on due to the expense of travel grants to speakers.

    Best Regards,
    Dharam Ablashi Scientific Director HHV-6 Foundation

    Address to send Slides for immunohistochemistry for HHV-6, enterovirus, EBV, lyme, parvovirus, etc:

    Dan Hartmann, PhD Director of Molecular Diagnostics Georgetown Pathology Georgetown University Hospital 3900 Reservoir Road, N.W. Med Dent Building, SW 201 Washington, D.C. 20007 202-784-3614 [log in to unmask]


    On 2/20/08 3:38 PM, "Reeves, William C. (CDC/CCID/NCZVED)" <[log in to unmask]> wrote:

    Dr. Ablashi,

    It's good to hear from you again and it looks like HHV-6 is taking off in ways I bet you never could have imagined when you first began to describe it.

    My Branch has been reorganized as the Chronic Viral Diseases Branch and no longer has responsibility for herpes group virus research at CDC. I suggest you contact Dr. D. Scott Schmid and see if he or a member of his Branch can represent CDC at the meeting. He took over responsibility for herpes work at CDC after Phil Pellett left. I see that you have invited Dr. Andrew Lloyd from the University of New South Wales. He was PI on the post-infection fatigue studies that CDC funded and collaborated on and he can present this work much more elegantly than I.

    The studies you are proposing sound very interesting. Again, since my group does not work directly with herpesviruses, we cannot collaborate in laboratory studies; I suggest you contact Dr. D. Scott Schmid for possible collaboration on immunohistochemistry studies. As you know Dr. Schmid worked with Carlos Lopez and Phil Pellett back in the old days of HHV-6 and this could be of great interest to him. Unfortunately, I cannot provide funding for studies such as you are proposing at this point in time due to severe budget constraints. However, you may wish to contact Dr. Suzanne Vernon newly appointed Scientific Director at the CFIDS Association of America. I understand they are launching a major new research funding effort for well designed focused pilot studies such as the one you proposed.

    Finally, I cannot help with funding for any conferences at this time. Again, you may wish to apply to the CFIDS Association of America.


    From: Kristin Loomis [mailto:[log in to unmask]]
    Sent: Thursday, May 01, 2008 4:46 PM
    To: Reeves, William C. (CDC/CCID/NCZVED)
    Cc: Schmid, Scott (CDC/CCID/NCIRD); Dharam Ablashi; Tony Komaroff
    Subject: Conference: Viruses in CFS & Post Viral Fatigue

    Dr. Reeves,

    Thanks for your email about the conference on Viruses in CFS.

    Since you are the leading CFS researcher in the world, we hope that you will reconsider and find a way to attend (or send a representative) to this this 1.5 day conference that will feature over 20 scientists from 7 countries discussing post-viral fatigue and the possible role of viruses in CFS. Given the illustrious list of CFS researchers who will be in attendance, your absence will be noticed, and your input sorely missed!

    The conference is being sponsored by the IACFS/ME and the HHV-6 Foundation and will be chaired by Tony Komaroff and Andrew Lloyd. This was an expensive conference for us to sponsor and we are flying in scientists from Australia, Japan and Germany. The Program Committee would still welcome your participation as a speaker to give your perspective on the possible role of viruses in CFS, and directions for future research.

    We are confused by your response to Dharam (below), because it appears that it may be impossible structurally for the CDC to study the role of viruses in CFS. You wrote that you do not study herpesviruses because that is done by Dr. Schmid. However Dr. Schmid tells us that he does not study CFS. So if viruses do play a role in a subset of CFS patients (as many scientists suspect), then apparently a role for viruses in CFS could never be uncovered by the CDC because the subject would never be studied given the CDC’s current organizational structure. Is this correct?

    We are also curious to know if there are issues relating to the CDC definition of CFS that also prevent you from studying viral etiology? If it turns out, for example, that various infections could be found for 8-10 subsets of CFS – would you then say that these subsets are “by definition” not CFS, so there is no reason to study them? If it is your policy to exclude viral etiology (or infectious etiology) from your research for structural reasons or due to the way you have defined CFS, then it would be important for others to understand this “gap” in CFS research (i.e. that the CDC will study everything relating to chronic fatigue EXCEPT viral etiology) if this is indeed the case.

    As you know, many virologists suspect that CFS researchers have been looking in the wrong compartment for evidence of virus in these patients, and that tissue, not blood, is the best place to look for these cell-associated viruses that are not found in the plasma.

    Is the CDC doing nothing to confirm the potentially hugely important data from Chia that implicates enterovirus in a large subset of CFS patients? FYI- although it is unrelated to HHV-6, our foundation arranged to send a number of CFS antrum biopsy samples to the pathology department at Georgetown, where Chia’s results were confirmed. (They also find HHV-6 in those tissue samples by the way, but not EBV.) What about the reports from China, Germany and Japan that Borna virus might be involved in a subset of CFS? And parvovirus? Or EBV/retrovirus K-18 associated CFS?

    You might be interested to know that a top virologist from Japan will present evidence at our International Conference on HHV-6 & 7 (just before the CFS conference) that HHV-6 latency proteins can induce encephalopathy and psychiatric disease. A Danish group will show evidence that HHV-6 activates the K-18 endogenous retrovirus superantigen. A group from a top cardiac center in Germany that present their data which shows that in over 1600 myocarditis biopsies, Parvovirus B-19 and HHV-6 were the two most common pathogens. They suspect that their cardiac clinic sees only “the tip of the iceberg” and that there are many subclinical myocarditis patients who have no cardiac symptoms -- just fatigue that is indistinguishable from CFS. Given the Peckerman finding of reduced cardiac output in CFS, we think this is an intriguing observation. We hope you agree.

    The brochures for both conferences are attached and a partial list of the CFS speakers is below. We look forward to hearing from you.

    Best regards,

    Kristin Loomis HHV-6 Foundation

    Partial list of speakers at the Symposium on Viruses in CFS and Post-Viral Fatigue:

    Jose Montoya, MD, an infectious disease specialist at Stanford will be announcing the results of his Roche sponsored trial of Valcyte in CFS patients with elevated antibodies to HHV-6 and EBV.

    Brigitte Huber, PhD, Tufts will discuss her NIH funded study of how viruses such as EBV and HHV-6 can transactivate an endogenous retrovirus, HERV K-18, which can in turn induce a superantigen which results in a dysregulated immune system and CFS.

    Kazuhiro Kondo, MD, PhD from Jikea University in Tokyo will present his findings that HHV-6 latency proteins and their role in CFS and other CNS diseases.

    John Chia, MD, an infectious disease specialist from California will present new data on enterovirus infections in CFS patients and will explain why examining stomach biopsy tissue is the best way to find these pathogens that rarely circulate much in the peripheral blood.

    Anthony Komaroff, MD, of Harvard Medical School will give an overview on HHV-6 and the reasons to suspect viruses in CFS.

    Nancy Klimas, MD, of University of Miami, will talk about immune markers in viral infections and compare them to what is found in subsets of CFS patients.

    Birgitta Evengard, MD, PhD of Sweden, will discuss viral markers in CFS and present new data on the indications of viral infection in Swedish twin pairs discordant for CFS.

    Barbara Savoldo, MD from Baylor College of Medicine, will compare CFS and chronic EBV and present results of their trial of immunotherapy (cytotoxic T-cell lymphocyte infusions) for severe chronic EVB patients.

    Parvovirus experts Mariko Seishima, MD from Japan will talk about evidence of elevated antibodies to Parvovirus in CFS patients, and

    Dirk Lassner, PhD, from Germany and as well the high rate of Parvovirus B-19 in viral myocarditis in Germany with the possible implications for a subset of CFS patients.

    Marshall Williams, PhD from Ohio State University will explain how certain enzymes produced by EBV and HHV-6 can produce sickness behavior in the absence of viral replication.

    Borna virus disease experts Liv Bode, and Keizo Tomonaga will present evidence that Borna virus may play a role in a subset of CFS patients in Germany, Japan and China.

    Andrew Lloyd, MD, from Australia will present new insights from his CDC-funded study of CFS in post-viral fatigue, and Peter White, MD, from the UK will give an overview of past studies that have tried to find evidence of continuing infection in post-viral CFS patients.

    On 5/2/08 10:48 AM, "Reeves, William C. (CDC/CCID/NCZVED)" <[log in to unmask]> wrote:

    1) What precisely is the objective of my attendance at the meeting? What do you want me to do?

    2) I do not understand the confusion regarding my response to Dr. Ablashi. Responsibility for CFS research at CDC has been assigned to my Branch. Responsibility for laboratory work on herpes group viruses has been assigned to Dr. Schmid's Branch (in a different Center). My laboratory team does not have expertise in herpes group viruses, we do not have reagents appropriate to working with this group of viruses nor do we have some of the specialized equipment used to work with this type of virus. This in no way precludes CDC studying the role of herpesviruses in CFS. For example, cervical cancer is caused by a virus (HPV); my Branch has responsibility for laboratory work on papillomaviruses at CDC, responsibility for epidemiology of cervical cancer resides in another center, responsibility for vaccine issues resides in yet another center, and responsibility for screening in a fourth center. The various groups in all 4 centers work together on the common problem. With respect to CFS following acute infection my group has worked with various investigators at CDC and internationally and in all cases laboratory work outside the domain of my Branch was the responsibility of our collaborator. Dr. Schmid's comment to Dr. Ablashi that he does not study CFS likely reflects the fact that his work on herpesgroup viruses is driven by CDC priorities (and resource allocation) in other areas such as STD's mental retardation, bioterrorism, and vaccine preventable diseases.

    3) There are no issues relating to the international definition of CFS that prevent us from studying viral etiology. If you peruse CFS publications on the CDC CFS website you will see that we have conducted substantial work in this area. Dr. Lloyd who is co-chairing your meeting represents our most recent collaborator (we are still publishing data from the study we conducted together). We have helped Dr. Montoya's group with instrumentation for monitoring disability and symptoms and recently helped them to validate scoring from their treatment study. We collaborated with Birgitta Evengaard (who I believe will attend the meeting) many years ago to evaluate the contribution of Bornavirus infection to CFS. Post-infection fatigue is an important component of CFS.

    Forwarded Message From:
    Kristin Loomis <[log in to unmask]>
    Date: Tue, 06 May 2008 13:57:31 -0700
    Subject: Re: Conference: Viruses in CFS & Post Viral Fatigue

    Dr. Reeves,

    Thank you for your reply. You asked what we would like you to do at the conference. If you would like to give a presentation relating to viruses, we would love to include it. However, our real objective in seeking your participation is to encourage you to listen to the presentations and engage in an exchange with the virologists and clinicians who have found what they believe to be compelling evidence that one or more viruses are involved in the etiology of various subsets of CFS.

    We will have over twenty presentations from investigators who have studied viral etiology, with participants flying in from Australia, the UK, Germany, Sweden, Japan and China -- so a trip to Baltimore would be very efficient means to meet them all at once. Also, Stanford’s Jose Montoya will be making an important announcement about the results of his Roche sponsored trial of Valcyte treatment for CFS patients with apparent viral reactivation. There will be other significant research presented. For example, a top virologist from Japan, Kazuhiro Kondo, will present new evidence that an HHV-6 latency protein induces encephalopathy. A respected retrovirus expert from Denmark will present evidence that HHV-6 activates endogenous K18 retrovirus superantigen. The conference is co-sponsored by the IACFS/ME and supported by the CFIDS Association of America as well as many of the regional CFS groups.

    Since you are such a prominent CFS researcher, and since so many around the world look to the CDC for guidance, your presence would speak volumes to this group because it would suggest that you have an interest in their work. Most of these investigators feel that establishment medicine is indifferent, if not dismissive, of their efforts to uncover an infectious etiology in various CFS subsets. Although I understand you have a busy June, your absence will inevitably leave the impression with these investigators (whether true or not) that you don’t believe their work is important. Given your long service to the field, you could be helpful to them, just by sharing your knowledge and contacts. Also, the meeting could be a valuable time for setting up collaborations for future study. I have summarized at the end of this email, a list of specific ideas you might want to explore.

    Stanford. The conference would be a great opportunity for you to get to know Dr. Montoya and make arrangements to invite him to the CDC or visit Stanford to learn more. It was a huge accomplishment to interest a major drug company in backing a trial of an antiviral for a segment of the CFS population. If his trial is successful, it will generate enormous interest in antiviral therapy and alter the research agenda in CFS, so wouldn’t it make sense for you to carve out some time with him? Although Jose Montoya appreciates the fact that you answered his question on the surveys, your input could be valuable to him especially if (as we expect) the trial is rolled out on a grander scale in the next phase. It would be really helpful to him to have a significant block of your time to discuss the study in detail.

    Post-Viral Fatigue. The Dubbo study was enormously valuable and we applaud your effort to study post viral fatigue. Do we think it answered the question of whether infections remain active in post-viral fatigue? No, but it was very revealing nonetheless. As we have mentioned to Dr. Lloyd, we hope he will use his valuable sera to look for EBV early antigen antibodies (the assay considered by experts to be the best measure of reactivated virus) and for DNA in the serum using an ultrasensitive PCR. Finally, we hope he will look for co-infections. Suppose, for example, that the the acute infection triggers a reactivation of a common virus – such as HHV-6 or coxsackie B3 -- in the brain tissue?

    Definitional exclusion. Here is why we asked whether you have decided to exclude further studies of virus due to the CDC definition:

    1. You state on the CDC web site that tests for EBV, enteroviruses, retroviruses, HHV-6 etc. have “no demonstrated value” for CFS patients “other than to rule out an exclusionary condition”.

    2. Other than the post viral fatigue syndrome (which is not technically considered CFS) you have published no studies on viral etiology in CFS since the 2000.

    Therefore, we thought it was a logical question to ask if you have decided that reactivated viruses or other infections might all be considered off limits for future study since they could be construed to be “exclusionary conditions”. We are relieved to learn that you would not define your work to the study of CFS so narrowly as to exclude the study of infections.

    CDC responsibility for HHV-6 and EBV as it relates to CFS. We are still confused as we assumed you were the “point man” for all aspects of CFS at the CDC. Suppose we find the perfect assay that can pick up HHV-6 chronic infection and want to propose that you test some of your stored samples with the new assay or send samples out to an expert HHV-6 lab. Are you saying we should contact about this, not you? Dr. Schmid would presumably be happy to work on an in-house assay to test for these viruses if your group allocated funding for a project, but this would have to be at your direction and initiative – no?

    Reagents. You mentioned that you have no reagents. We have a repository of reagents for HHV-6 and HHV-7 and have helped Yale and Stanford’s pathology department set up the immunohistochemistry assay at their institutions. They are both currently looking at HHV-6 in myocarditis and brain tissue samples at our suggestion. We would be happy to assist you with supplying these antibodies to the relevant branch at the CDC if you have an interest in examining tissues.

    I hope you don’t mind this outpouring . We know that you work hard and are trying to do the job as you feel it should be done.

    Please let me know if I can answer any more questions on the conference. Dharam and I hope to see you in Baltimore, June 22nd -23rd.

    Thank you for your time. A list of ideas to explore at the conference follows!


    Kristin Loomis President & Executive Director HHV-6 Foundation


    John Chia has made a serious contribution to the debate about CFS with his startling observation that 80% of the stomach antrum biopsies from CFS patients test positive for enterovirus proteins (compared to 20% of controls) and that 37% of these patients had RNA detected. Enterovirus expert Steve Tracy at University of Nebraska and expert pathologist Dan Hartmann of Georgetown University have confirmed that they too find RNA and positive IHC results in samples from Chia's patients. Chia has done a remarkable job with this original research as a solo practitioner, but could really use guidance from you to find a collaborator to confirm or refute these findings—at the CDC or elsewhere. Perhaps you could meet and make plans to invite him to meet with your colleagues in the Polio and Picornavirus Branch at the CDC to get ideas on investigators who might take an interest in carrying the research further?

    One of the most intriguing new ideas to come along in CFS is the idea that subsets of these patients actually have subacute, chronic viral myocarditis. In the US, cardiologists stopped doing myocardial biopsies 25 years ago on the theory that there was nothing one could find that was treatable. In Germany, however, cardiologists continued to do biopsies and treat viral myocarditis aggressively. Three top German cardiology groups have recently reported that Parvovirus B-19 is the most common pathogen in myocarditis, followed by HHV-6. Two of the three groups Germany groups will be at the conference. We would love to set up a meeting so you can hear this directly from them. Most of these patients have very few symptoms (except fatigue) until the disease has progressed to a late stage. Martin Lerner, in the US has also been suggesting the same process EBV/CMV myocarditis in CFS for over ten years, but has not had the “smoking gun” biopsy/ immunohistochemistry data to prove it.

    Several experts in diagnostic assays are convinced that the only way to find this viruses like HHV-6 and EBV in the serum or spinal fluid of subacute cases is to start with a large volume of material and an concentrate the virus by high speed centrifuge or magnetic beads. Vanderbilt uses magnetic beads. San Rafaele Institute uses high-speed centrifuge. Viracor is also concentrating and are coming out with an ultrasensitive assay that can find 25 copies per ml, is they start with a minimum volume of 5-6 mls. All of these groups will be in attendance at the conference and would be delighted to discuss their assays.

    Dan Hartmann, a pathologist at Georgetown has an interest in looking at brain sections by immunohistochemistry and in situ hybridization. We would be delighted to underwrite such as study but could use your help in finding suitable samples stored on paraffin block. Hartmann will be at the conference as well as several other expert pathologists.

    We have no idea if Borna disease virus plays a role, but scientists from Japan, Germany and China have all found elevated antibodies to BVD in patients compared controls. As with the other viruses associated with CFS, it is very difficult to find in the peripheral blood. One of the speakers at our conference, from the Robert Koch Institute, claims to have an assay that is more sensitive than the serological assays. They have isolated Borna virus from a CFS patient of Tony Komaroff (to be reported at the meeting) and suggest that antiviral treatment with Amantadine can bring relief. There is a huge credibility problem because this virus is so difficult to detect. You could help them by collaborating to supply blinded samples an analyzing the results. We could set up meetings for you with all three of these international scientists. (Only two are listed on the brochure, but a neurologist from Beijing University in China has just asked to present their Borna/CFS data as well; they published data on elevated Borna virus antibodies in CFS patients two years ago.)

    Roche believes that the virus can be found in both the brain tissue and cardiac tissue, even though direct evidence cannot be found in the plasma, and they invested over a million dollars in a clinical trial. Dharam could introduce you to potential collaborators with state of the art assays such as:
    · Special ultra-sensitive assays for Q PCR for examining CSF or sera · Antigenemia using the HHV-6 early antigen · ELISPOT to look for interferon gamma response to HHV-6 specific proteins
    · immunohistochemistry using HHV-6 early, late and latent monoclonal antibodies
    · antibody capture using electrochemiluminescence

    These investigators would all be delighted to test blinded samples from you and collaborate on future studies.You have not looked at HHV-6 since the small study of 26 CFS patients done in 1999, using assays, which experts would now agree (with the benefit of current knowledge) were probably inappropriate. A qualitative PCR on whole blood cannot differentiate between active and latent infection, virus isolation is nearly impossible in cases of chronic (as opposed to acute); the viral load is too low. Several groups using serological assays showed that IgG and IgM to the early antigen protein demonstrated significant differences between patients and controls in both MS and CFS patient populations. (Jacobson 2000, Ablashi 2000, Patnaik 1995). Perhaps it is time for a fresh look?

    Ron Glaser and Marshall Williams have produced intriguing data on HHV-7 DUTPase that can induce sickness behavior in mice in the absence of viral replication. They have identified a similar enzyme for CFS. They need an independent group to validate their findings and would be delighted to collaborate. Ron Glaser has announced that he will stop studying CFS because there is no funding or interest in his work. An interest from the CDC in helping him validate his work might help persuade him to reconsider. The first step of course, would be for you to sit down with him learn more about these significant findings. Marshall Glaser will be at the conference and would be delighted to speak with you. Also, Jonathan Kerr has found that various CFS related genes have previously been shown to be up-regulated in EBV, including the BRLF1 and EB12 genes. The EB12 gene is upregulated 200 fold in EBV infected cells, and was differentially expressed in five of Kerr’s seven subsets. There will be a number of EBV experts at the conference who might be able to add perspective on this finding.
  7. jasminetee

    jasminetee Member

    And let's look at who benefits from psychologizing CFS: the Health Insurance Agencies, Social Security, Private Disability Companies. Today almost all disability plans only pay out for 2 years. Psychiatrists benefit as well.

    Reeves needs to stand down!

  8. Spinetti

    Spinetti New Member

    Excellent comment, teejkay.

    Reeves needs to be stood down!
  9. mezombie

    mezombie Member

    Thank you so much, Khaly!

  10. AuntTammie

    AuntTammie New Member

    Go Kristen Loomis!!!

    Oh how much I wish for poetic justice for people like Reeves and Wessley (and so many others who agree with them and/or allow them to continue to destroy lives).....a month or two with ME/CFS for most of them would be sufficient, but for Wessley esp, I would love to give him a little longer and perhaps lock him in a psych facility for awhile, too, and tell him it's all in his head, and force him into some GET and some of what they are trying to pass as CBT (trust me, from the transcripts I've read of some of the supposed UK CBT sessions, they are not even using real CBT....I have a counseling degree, so I am very aware of how it is supposed to work, and they are not using it that way at all - unless UK psychiatrists define it a lot differently than US counselors do!)
  11. skeptik2

    skeptik2 Member

    I could see that she did two things splendidly:

    She pointed out the lack of appropriate terminology Reeves' uses for CFS/ME and his inappropriate research, while at the same time giving him every chance in the world to get on board with the rest of the world.

    He was flattered to death, in order to compel him to go to the HHV6 conference, and he found every reason in the world to not go.

    His arrogant belief that he is going to be "king of the world" in CFS research is going to be crushed to bits eventually.

    I can't wait.

  12. Khalyal

    Khalyal New Member

    Thank you so much! All of your hard work and dedication to the truth is a real inspiration for me.
  13. mbofov

    mbofov Active Member

    Thank you so much for these postings! I don't know how you did it (it was a lot of work), but am very grateful that you did -