The Alpha Dog

October 26, 2009

Posted by Cort Johnson

Tantalized by the opportunity to make a difference the ME/CFS community let loose on the CDC over the past year. To its credit the CDC’s review process allowed for that.

Missing the Forest for the Tree – The CDC, however, is not the main game in town – they’re not the alpha dog we vitally need to tame – not at all. Perhaps because they’ve made more blatant errors than anyone else the CDC’s has always assumed an outsized importance in the chronic fatigue syndrome community’s mind.

There’s certainly no disagreeing that they’re important – they are; they’re tasked with  doing  research, interacting with public health officials, educating physicians education, documenting prevalence and costs, identifying risk factors , etc.  but they are not our most important federal agency; in fact they’re not even close.

The Alpha Dog - This is because the CDC can’t even begin to do its job correctly until its big brother in Maryland – the NIH – gets its act together. Developing an adequate public response to a disease (i.e. disease control) – works very well only with diseases that can be controlled. But you can’t control a disease you don’t know the cause of. Likewise educating physicians is great – unless you don’t have any treatments to provide them. An educated physician who still has no bullets in his gun simply makes for a happier office visit.

MIA Agency Uncovering the cause of chronic fatigue syndrome is not really the CDC’s job – it’s the NIH’s job – in fact, it’s all they’re supposed to do. The NIH  is tasked with uncovering the cause of a disease, providing treatments for it. But the NIH has been MIA in this disease for the past 10 years. While the CDC’s presence has at times made things worse you could argue that the NIH’s absence has had even worse consequences. The best researchers in the world aren’t at the CDC, they’re at the NIH and they’ve turned up their noses in disdain at this disease. If ME/CFS Community really needs the CDC to get it’s act together it desperately needs the NIH to finally start getting serious about this disease.

Jennifer Spotila – one of our fiercest advocates on the CFID’s Association Board – - testified to the CFSAC and http://www.cfids.org/cfidslink/2009/060309b.pdf

“There are 215 conditions listed on NIH’s Estimates of Funding. Out of those 215, only one line item is projected to have less funding in 2010 than in 2009: Chronic Fatigue Syndrome. One out of 215. CFS funding is projected to drop from $4 million in 2009 to $3 million in 2010. This 25% cut in funding – especially when no other category is being cut – is emblematic of this entire Department’s lackadaisical approach to CFS.”

“We frequently hear from NIH, as Dr. Hanna said today, that the funding level is dependent on quality grant applications coming in first. I suppose we should conclude, then, that NIH is overwhelmed with quality applications for research on Pick’s Disease which affects fewer than 200,000 people in the US, because that category is projected to receive a 30% increase over its funding in 2008.”

Jennifer Spotila, May 27, 2009

Not Even Chicken Scratch – To get a glimpse of the NIH’s disdain for this disorder consider that it’s receiving about $3 million a year in funding. The NIH could boost funding dramatically and recusitate the ME/CFS  program simply by announcing that they were going to pour $10 million a year into the disease.

That sounds like a lot of money but it’s still chicken scratch in the medical world. That’s not even administrative costs for large diseases (like ME/CFS). The NIH budget is over $30 billion this year . They could provide $10 million with a flick of their little pinky. Yet despite all horrific statistics (1 million affected , disability rates, $20 billion dollars a year in economic losses) they won’t even do that. You are looking at a system that cares nothing about what people need and everything about what researchers think is hot and sexy and will  further their careers.

Right now ME/CFS has become a gotten a bit hot and sexy and it’ll be interesting to see what kind of funding the NIH announces at the CFSAC meeting. Whatever they do announce don’t think for a minute it’s because they all of a sudden care about people with this disorder. The sick fact is that they don’t give a hoot. It means nothing to them. The fact that you may be sick with something they like to study counts for everything. It XMRV doesn’t work out it’ll be back to business as usual before you can blink an eye.

You might say that now that they’re focused on XMRV we’re going to be fine. But if XMRV works out it’s going to have to tie together an enormous number of different strands of research.  According to one patients report Dr. Peterson has even suggested that autonomic nervous system problems could play a key role in XMRV infection and activation. (Do ANS problems come first?)

So while we’re watching the NIH (hopefully) step up to the plate with XMRV we have see if its business as usual  with regards virtually everything else in this disorder.

The mantra with the federal agencies is to trust nothing they say and  focus entirely on what they do. We’ll see a good case of how far trust goes in the next blog.

Dig Deeper: Read Hilary Johnson’s Op Ed piece in the New York Times – A Case of Chronic  Denial

Next Up: Teflon Woman

20 comments

{ 20 comments… read them below or add one }

Erik Johnson October 26, 2009 at 9:08 am

CENTERS FOR DISEASE CONTROL AND PREVENTION
Official Mission Statement:

“CDC is responsible for controlling the introduction and spread of infectious diseases, and provides consultation and assistance to other nations and international agencies to assist in improving their disease prevention and control, environmental health, and health promotion activities. “

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Sue Jackson October 26, 2009 at 4:54 pm

Excellent post, Cort. Thanks for clarifying the roles of NIH and CDC with the straight facts…as always. Very enlightening. Let’s hope that XMRV is enticing enough that NIH steps up to the plate with increased funding.

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Khaly Castl October 26, 2009 at 6:27 pm

Cort said, “Perhaps because they’ve made more blatant errors than anyone else the CDC’s has always assumed an outsized importance in the chronic fatigue syndrome community’s mind”

We would first have to believe that what the CDC has perpetrated is a series of blatant errors. I see it more as one of the most insidiously ingenious plots I’ve ever heard of…

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cort October 27, 2009 at 1:09 pm

I don’t. I don’t see the need for a conspiracy and I don’t see why the CDC would engage in one. We started out and still are in the viral department of the CDC. I assume they would’ve loved to have found a virus in the beginning – these are or were research geeks not politicians. I know Hillary believes its all some sort of master plot; the name was a part of it, the early retrovirus stuff was, everything has conspired to ruin us! But I think she and you give far more credit to the CDC than they deserve. I think the problem is much worse than you think – you think they care! I don’t think they care about us at all. It’s all about a very very very lackluster approach to a very difficult problem. The CDC doesn’t give a damn about CFS patients! The only conspiracy they’re engaged in is a conspiracy to ignore it as much as they can get away with. That’s my belief.

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Dorothy October 26, 2009 at 8:05 pm

Thanks for this great post, Cort! Wow, I didn’t know the NIH’s total budget was 30 BILLION dollars! That means that the 3 million for CFS is one-hundredth of a percent (.01%) of the budget, or, in terms of an actual fraction, it’s .0001 (one ten-thousandth) of the total research pie. Good grief, that’s so small it’s beyond insulting. If they gave us even a measly tenth of a percent of their budget, we’d be up to 30 millions bucks. As you said, it’s chicken feed to them.

If it were up to me, I’d drop off the stubborn Alpha Dog and incorrigible Beta dog at the Humane Society, then get myself some new puppies who could be trained properly.

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cort October 26, 2009 at 9:30 pm

Thanks Dorothy – great arithmetic. We definitely need a real dog in this hunt!

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Dorothy October 26, 2009 at 10:14 pm

Yes – we also need to stop being Underdogs and move up to Top Dogs. After we get rid of Reeves’ Empirical doggerel. :) :)

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meghan Shannon October 27, 2009 at 5:27 am

With your calculations of NIH this should allow all people to KNOW that NIH is no better then CDC in the treatment of this disease.
Dr. Fauci of NIH needs to be kept from any work and money for ME, CFS/CFIDS and XMRV that is dealing with these disease processes.
meghan

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cort October 27, 2009 at 12:57 pm

That’s exactly right; the NIH is no better and in some ways worse than the CDC because it’s such a black box. At least we have the CDC review to tangle with but there are no reviews at the NIH, the situation there is considerably more complicated in several ways and they are where the major research should be happening. Check out the next blog for some shenanigans from the NIH.

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Paul Leverenz October 27, 2009 at 12:58 pm

Keep up the good work Cort! A few thoughts, not so many answers. Watching from a distance I think your NIH has ‘enjoyed’ a lack of scrutiny. It really requires political pressure which exposes their funding levels. The question for US patient advocates is how to spread their fight across two fronts. The CDC need to be scrutinized and their views brought to light because they seem to have defacto control over the press machine, with a global effects. They also seem to be able to get away with being able to convene ‘the’ ‘international CFS advisory/working group without scrutiny of their selection criteria. (Once again a defacto authority. ) It would seem from my vantage point that the CDC are shooting themselves in the foot regarding their ’2.5% CFS’ story. It is diverging further from a A ’0.2-04% ME/CFS’ story. They will be consigned to irrelevancy by anyone managing a health budget. Maybe that’s exactly what they want. Patients need to drive a wedge between these two stories.
Whether you do that by attacking directly or by ignoring I don’t know.

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cort October 27, 2009 at 1:17 pm

I agree completely – there has been very little scrutiny at the NIH and that which has been done is produced very few effects. That’s because we’ve never been able to get enough people involved to exert pressure on the politicians that control the NIH’s purse strings. Until we do that or until some breakthrough discovery appears like a shot out of the blue (as may have just happened ;) ) we’re doomed to irrelevancy – doomed to decades of poor health simply because our mighty research establishments can’t bother to get engaged. Maybe that’s changed – I certainly hope so – because its really clear that we were doing nothing to change it.

I think the CDC did shoot themselves in the foot big time with that definition. Dr. Reeves should be fired simply because his inability to enroll anyone in this radically new definition of chronic fatigue syndrome. What a stunning failure that was!

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Jean Harrison October 27, 2009 at 1:30 pm

Wonder what the total pay for the staff at NIH is. Guessing it’s more than the entire budget for CFS, which affects between 850000 & 1 million people.

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Erik Johnson October 27, 2009 at 8:57 pm

Cort, why would you discredit Hillarys version of events by saying there is no need for a conspiracy and don’t see why the CDC would engage in one, and then replace it with your belief, which states the same thing?:

That a conspiracy to ignore CFS patients is taking place.

Reeves stunning failure to enroll anyone can SCARCELY be compared to his stunning SUCCESS in derailing all effort to draw attention to the events described in Osler’s Web, which I can personally attest to being factually correct in every way.

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Angie Croix October 28, 2009 at 12:06 am

OK, so instead of us all complaining what do any of you suggest we NEED to DO..
Do we need to start a letter writing campaign to Katleen Sebileous?
Do we need to start a Petition (with one of those of you with knowledge of the facts)
and get millions of signatures and send it to whom?
BTW, how many of you have already signed the Petition about changing
the CDC definition of CFS?
What can we DO…istead of just complaining?
Of we are NOT part of the Solution…it appears to me that we are part of our own problem.
As the movie said, “I’m MAD as Hell and I’m NOT going to take it anymore.”
Let’s get our “poop in a Group, and DO something.”
Can we form a committee of the “Patient Intelligencia” and have online
meetings and form a plan of attack to STAY IN the Headlines and
Get those that are Guilty –Have some LIGHT shown ON them and their deeds?
…and HOW their “lack of deeds” had led to abuse of millions of citizens
and helped to bankrupt not only their families but NOT been in the best interest
of this country, it’s finances, it’s mental health, and they have been NOT doing what they were hired to do?
How about a “whistle blower’s line” for ME/CFS abuse?
I’m tired of “belly-aching” and want to see us GET ACTIVE even if it’s from our beds
ON our laptops.. as long as we are STILL alive we can put up the GOOD Fight for Justice.

Thank You Cort for your educational history, please continue to educate us so we can
broadcast this news FAR and WIDE and Help Work for a CHANGE for the Better.

What good is medical coverage if the research hasn’t been done, and the doctors have no answers yet?
Let’s put the cart BEHIND the horse…and then RIDE ON with Knowledge, which is Power if we choose to use it.

and be sure to tune IN to the CFSAC meeting this Thurs & Friday… the NIH is counting the number
of computers that are signed in and watching…

2 day Event Schedule

Day 1
*Day 1 LIVE online webcast*

Day 2
*Day 2 LIVE online webcast*

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Carolyn Richards October 28, 2009 at 7:16 am

Let us think about one thing that Reeves did that killed research on HHV6 that is easily proved. Gallo states in his patent that it is found in a mono like illness (he was testing Cheney’s patients). Ablashi was on Gallo’s research. Gallo worked for NIH. Ablashi had his own research papers on HHV6 found in CFS & many other researchers. Then Reeves puts his name on a paper saying the CDC did not find any HHV6 in CFS patients. The problem beint too many people put too much credence in the CDC, so what do you think that did to that portion of viral research.

Let us ask ourselves how that could happen? Reeves is not familiar with Gallo’s viral work or that he looked at CFS patients? He doesn’t have any training in virology? He is ahead of a CFS study but doesn’t know what it is?
He keeps changing the definition until no one recognizes CEBV. They discontinued research on EBV as they decided it was not the “cause”. Somewhere they must have gotten lost as how many studies do they have looking for “cause”?

There has to be a reason that he continually ignores or defaces CFS. Does he want it to disappear? Why? Coverup?
Why? Something accidental from a lab?
Another Tuskegee study, different guinea pigs? Money?

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meghan Shannon October 28, 2009 at 7:43 am

Carolyn, just caught your post. It is my understanding Gallo did the HTLV I and II leukemia retro viruses and he worked on the HIV.

Down the Hall Dr. Elaine DeFrietas worked on Dr. Cheny and Bell’s patients with CFS.

Gallo had nothing to do with CFS/CFIDS.
meghan
I do agree that Reeves, his buddy James Jones and NIH’s Fauci need to go and not have anything to do with ME, CFS, CFIDS, XMRV…or anything

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Carolyn Richards October 28, 2009 at 8:27 am

Megan,

I pulled Gallo’s patent (all about 40 pages) I could probably look it up for you (the patent number anyway). About midpoint in the HHV6 patent it states it is found in a “mononucleosis like illness”. I first saw this in a NCF Forum but me being from “Missouri” had to pull a copy of the actual patent.

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Khaly Castle October 28, 2009 at 10:03 am

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:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0905a&L=co-cure&T=0&F=&S=&P=7987

Date: Thu, 7 May 2009 05:18:34 -0500
Reply-To: Tate Mitchell
Sender: ME/CFS and Fibromyalgia Information Exchange Forum

From: Tate Mitchell
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 http://www.hhv-6foundation.org/

**********************************************************
On 2/13/08 3:20 PM, “Reeves, William C. (CDC/CCID/NCZVED)” 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)” 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.

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On 5/2/08 10:48 AM, “Reeves, William C. (CDC/CCID/NCZVED)” 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.

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Forwarded Message From:
Kristin Loomis
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!

Best,

Kristin Loomis President & Executive Director HHV-6 Foundation

IDEAS ON POTENTIAL COLLABORATIONS TO DISCUSS AT THE CONFERENCE:

ENTEROVIRUS.
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?

PARVOVIRUS/MYOCARDITIS/CFS CONNECTION.
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.

ULTRASENSITIVE SERUM/CSF PCR.
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.

BRAIN SECTION IMMUNOHISTOCHEMISTRY/IN SITU PCR.
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.

BORNA VIRUS.
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.)

HHV-6.
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?

EBV.
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.

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meghan Shannon October 28, 2009 at 6:03 pm

I was not responding to patents. When you work for an institution then the Patents are done threw them and not by the individual scientist. They lest scientists in Patents but the institution, Wistar holds the patent.
I still don’t get where you saw Gallo worked with Cheney and Bell. It is clearly Dr. DeFrietas who had their patients. Even Gail Kansky from NCF would say that.
meghan

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Erik Johnson October 28, 2009 at 8:16 pm

Gallo’s lab confirmed finding of the novel virus manifesting the “cytopathic effect”
in samples sent to his lab by Dr Peterson.
CPE was B cell cytolysis, which was in total opposition to the B cell proliferation observed in mononucleosis, which made the Tahoe mystery illness conflict with basic CEBV Syndrome assumptions and concepts.
The “Tahoe Flu” was the first discrete illness-phenomenon this virus was found in after AIDS.
The newly discovered virus was called “Human B Cell Lymphotropic Virus, HBLV” at the time. Later to be changed to HHV6, and then again to HHV6A to distinguish it from the ubiquitous B variant, which was later discovered.

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