Saturday, May 9, 2009

More proof of post-exertion abnormalities

Plasma IL-6, its soluble receptors and F-isoprostanes at rest and
during exercise in chronic fatigue syndrome.

Journal: Scand J Med Sci Sports. 2009 Apr 13. [Epub ahead of print]

Authors: Robinson M, Gray SR, Watson MS, Kennedy G, Hill A, Belch JJ, Nimmo MA.

Affiliation: Strathclyde Institute of Pharmacy and Biomedical
Sciences, University of Strathclyde, Glasgow, UK.

NLM Citation: PMID: 19422646

The aim of the current study was to investigate the levels of
interleukin-6 (IL-6), its soluble receptors (sIL-6R and sgp130) and
F(2)-isoprostanes, at rest and during exercise, in patients with
chronic fatigue syndrome (CFS).

Six male CFS patients and six healthy controls performed an
incremental exercise test to exhaustion and a submaximal exercise
bout to exhaustion. Blood samples taken in the submaximal test at
rest, immediately post-exercise and 24 h post-exercise were analyzed
for IL-6, sIL-6R, sgp130 and F(2)-isoprostanes. A further 33 CFS and
33 healthy control participants gave a resting blood sample for IL-6
and sIL-6R measurement.

During the incremental exercise test only power output at the lactate
threshold was lower (P<0.05) in the CFS group. F(2)-isoprostanes were
higher (P<0.05) in CFS patients at rest and this difference persisted
immediately and 24 h post-exercise.
The exercise study found no
differences in IL-6, sIL-6R or sgp130 at any time point between
groups. In the larger resting group, there were no differences in
IL-6 and sIL-6R between CFS and control groups.

This investigation has demonstrated that patients with CFS do not
have altered plasma levels of IL-6, sIL-6R or sgp130 either at rest
or following exercise. F(2)-isoprostanes, however, were consistently
higher in CFS patients.

Friday, May 8, 2009

CFSAC Meeting May 27-28 in DC - Get your testimony in now!

I'd like to remind everybody again that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) of the Department of Health and Human Services (HHS) will be having meetings Wednesday and Thursday, May 27-28, 9 am to 5 pm, at HHS headquarters in the Hubert Humphrey Building, 200 Independence Avenue, SW.; Washington, DC 20201.

The CFSAC includes representatives from CDC, NIH, HRSA (public health information), and FDA - all of which are agencies within HHS so you're talking to their bosses - and the Social Security Administration.  There are also first-rate public members.  Here's the whole roster of members:

THIS IS THE FIRST CFSAC MEETING OF THE OBAMA ADMINISTRATION.  We have a new CFSAC head, Dr. Wanda Jones, who is sympathetic to our plight, and DHHS finally has a new head, too. 

We REALLY NEED as many patients, advocates, family members, and friends as possible to show up at this meeting, because we need to make a statement to HHS that this is IMPORTANT.  I'd really like this meeting to be bursting at the seams.  You don't have to testify; you don't even have to sit up!  Just show up.  There will be people lying in the back (including me from time to time ...)

There are five-minute slots available for testifying by phone or in person.  There is, as yet, no equipment to have the committee meeting broadcast via conference call, so if you wish to give testimony by telephone, you must give them a phone number to call, because THEY will call YOU in the middle of the meeting.

If you want to testify either in person or by phone, call or email as soon as possible:

Telephone: (202) 690-7650
FAX: (202) 401-4005

Technically the deadline to call to testify is May 22, but I'd call immediately to make sure you get a space.

They will distribute a written copy of your statement, roughly 5 double-spaced pages.  You can email your written copy by May 22 (preferably by May 20) as a WORD attachment to  or FAX testimony to (202) 401-4005.

YOU MAY ALSO SEND TESTIMONY even if you cannot attend or get a slot to testify by phone.  Send a WORD document to:  or FAX testimony to (202) 401-4005.

Technically, there is no limit on written evidence or testimony.  Practically speaking, it is doubtful anybody will read more than five pages, and keep in mind that someone who works there has to do the copying and distribution. 

However, if you wish to submit more, there is no law or rule limiting how much you can submit.  If there is something very important that needs to be submitted, go ahead. 

I usually submit more (for example, I have handed out the Canadian Consensus Document) but that is when I am testifying in person, and I make the copies myself and bring them with me so as not to tax the system.  Just a suggestion.  And I know you all don't read everything I write - which is a good argument for not writing as much as I do. 

Briefer gets read.

We have important issues to get on the table.  The CDC is bringing their five-year plan to Washington.  And anybody who has been involved with the plight of young Ryan Baldwin in North Carolina knows that issue needs airing, too. 

If you live outside the U.S., share what works (or what doesn't work) in your country, remind them that what happens at CDC or NIH has global implications; or just tell them how bad it is and remind them this is a global health crisis.

There will be people there who don't know how bad this can get:  teach them.  Tell them how bad this disease really is.  Tell them how poorly treated you are.  Talk about the inequitable treatment this disease and its targets have received from the government and the medical community.  Tell them how that has hurt you or a loved one.  Tell them what you need.  Tell them your fears.

So - here are the ways to participate:

1.  Send in written testimony by May 22 at the latest;
2.  Attend and give testimony;
3.  Attend and just bring written testimony;
4.  Attend!
5.  Give testimony over the phone during the meeting;
6.  Send in written testimony even if you are not orally presenting it.

Deadline for written testimony:  May 22, preferably May 20
Deadline to apply to testify orally:  May 22 - the sooner the better.

Contact CFSAC via DHHS:

Telephone: (202) 690-7650
FAX: (202) 401-4005

Mary Schweitzer


Thursday, May 7, 2009

CDC Solicits Input and Gets Plenty (not what they wanted to hear, either!)


May 2009 CFIDSLink: CDC Solicits Input and Gets Plenty

From the May 2009 Edition of CFIDSLink
CDC Solicits Input and Gets Plenty
The CFS research program at the U.S. Centers for Disease Control & Prevention (CDC) is almost 25 years old. Its home in the Coordinating Centers for Infectious Diseases, under a unit called the Chronic Viral Diseases Branch (CVDB) suggests that CDC defines CFS as a condition resulting from a chronic viral infection and that its research program is designed to understand it as such. Yet the most recent studies from CDC investigators link CFS to traumatic events in early life and repeat others' findings of poor sleep in CFS. A quarter of a decade after the first investigation of CFS by CDC in Incline Village, Nevada, the CVDB's lack of understanding of "true" CFS could not be more obvious. Here is a meeting report, as well as some information you won't find elsewhere - how the Association has been pushing this point for nearly two years.
A public meeting held at CDC on Monday, April 27, 2009 invited "stakeholder" input on a five-year strategic research plan being developed to guide the CFS program. The heightened alert caused by rising numbers of swine flu (H1N1 virus) in the U.S. put CDC on the front lines of that outbreak and its Global Communications Center was swamped by reporters, video crews and photographers at noon on April 27. A press briefing being held in auditorium B-1 garnered most of the traffic, but a few of us walked farther down the hall to B-2 where the CFS meeting was held. There were about 30 people in the room, nearly half of whom were CDC employees. The advocates were mostly local patients, with just a few of us having traveled from out of state to attend the half-day meeting. CFS patient Alyson Butcher and her husband Kenny flew in from Houston that morning and Dr. Nancy Klimas was there from Miami. I had driven from Charlotte the night before.
Acting CDC director Dr. Richard Besser had planned to make opening comments, but on arrival we were told that he, of course, had to change his schedule to accommodate media interviews about the swine flu outbreak. Dr. Lonnie King filled in, recounting worn CDC messages and offering the story of "one of their own" agency employees who came forward as a CFS patient after the November 3, 2006 press conference led by then-CDC director Dr. Julie Gerberding. Dr. Steve Monroe provided an overview of the planning process and gave an update on the agency's full-force efforts to respond to the "public health emergency" caused by swine flu, of which there were then 20 U.S. cases. Dr. William Reeves, chief of CVDB and CDC's lead CFS researcher, gave a short and overly general synopsis of current activities. The moderator then provided ground rules to the public for making comments, both in person and by telephone, which those of us in the auditorium could hear broadcast over the P.A. system.
The lack of detail about CDC's research plan before the April 27 session left many to use their time to plead broadly for help with better diagnostics and treatment, or access to physicians who would recognize the severity of their symptoms and offer some relief. Others expressed strong emotions about the lack of progress over 25 years and deep concern about CDC's propagation of a broader "empiric" classification method for identifying CFS patients enrolled in its studies. Tempers often flared about the lack of respect shown by Dr. Reeves and others for patients' concerns and the lack of productivity and direction that defined CDC's CFS research in recent years. Several people demanded new program leadership and others stated outright that Reeves should be replaced.
By 5:00, about 35 people had offered their input and three of the four CDC leadership representatives (Sarah Wiley, Dr. Monroe and Dr. Michael Miller) were still attentive, making notations in their green lab notebooks and ignoring their Blackberries and cell phones, in spite of swine flu updates likely being issued to CDC staff. But Reeves, seated on the first row with his head bowed, glasses off and eyes closed, remained still through the lengthy comment period. Was he even listening? He vanished as soon as closing remarks were delivered by Dr. Monroe.
Three Association representatives delivered comments during the testimony period: board chairman Jennie Spotila, board member Dr. Katrina Berne and me. We had written our comments independently but they all echoed messages the Association had been delivering for the past 20 months to CDC leadership. The program was broken, or as I chose to say from the podium that afternoon, it had "lost its mojo."
Our most recent concerns were first directly expressed in 2007 through the decision not to pursue a sole source contract offered by CDC to continue the provider education project. While the need for provider education is urgent, CDC's methods were inefficient and the contract terms were unfavorable. In a letter sent to contract officer Jeff Miller on August 16, 2007, I stated, "the many potential risks and vulnerabilities in the terms of this contract, as well as growing concerns about the direction of the CFS program and the manner in which the contracting process has been handled, have led to the decision not to continue the proposal process."
Conversations with coordinating center leadership went nowhere and a Blue Ribbon Panel's set of recommendations didn't go much farther in changing current practices. So, we asked for a Congressional inquiry into program direction and funding accountability through a letter sent to Senate Majority Leader Harry Reid and other influential members of Senate and House in March 2008:
"Senator Reid, we deeply appreciate your tireless advocacy in support of the CFS patient community and we know that you are committed to assisting us in fulfilling the promise of better diagnostics and therapeutic approaches to reduce the significant burden of illness posed by CFS. Your immediate assistance in helping us determine the state of the CFS program at CDC and restore its promise would be incredibly important and hopefully will lead to improved transparency, accountability and performance."
Senator Reid forwarded our letter to then-CDC director Dr. Julie Gerberding and she responded with a promise to look into the matter. A meeting held in Senator Reid's office on June 7, 2008 with Miller, Monroe, Wiley and two DC-based CDC staffers gave us the opportunity to directly state our concerns and to ask some of the questions the Association had submitted in response to a written update circulated by CDC at the May 2008 CFS Advisory Committee meeting. They promised regular updates and a complete accounting of the CDC's expenditures between 2005-2008."
A series of conference calls over the 2008 summer and into early fall continued the dialogue and provided additional opportunities to continuously reinforce our message about the need for reforming the program. We closely examined the expenditures CDC reported and were given descriptions of the activities supported, although CDC staff didn't seem concerned by the lack of outcomes for the millions that had been spent and obligated to the program. At the October 2008 CFS Advisory Committee meeting, I went "public" with these concerns and advisory committee members recorded theirs as well.
As scheduled, two weeks later CDC convened a long-overdue external peer review of its program. The participants were selected from lists of candidates submitted by the Association, the CFSAC and others earlier that spring; however, only five reviewers were chosen and one was unable to attend. Based solely on the report issued after the review, material presented to them must have focused on past work over a 10-year period since the prior peer review in 1999, rather than more recent past or planned studies. This surprisingly positive endorsement of CDC's program was used by CDC to inoculate other criticism, and at that point, the focus shifted to developing a five-year plan, as the reviewers recommended.
The November 2008 election brought opportunities to engage new leaders in the dialogue, but delays in confirming a new Secretary of Health that meant a new CDC director might not be appointed for months after the election. Early in the new administration, the Association sent a letter to Monroe on February 10 citing President Obama's directive to enhance data sharing and transparency:
"The data amassed by the CDC CFS Research program is a valuable resource that must be released and shared in accordance with the CDC/ATSDR Policy on Releasing and Sharing Data and the President's memorandum dated January 21, 2009 that directs all executive agencies to 'take appropriate action, consistent with law and policy, to disclose information rapidly in forms that the public can readily find and use.' By releasing the data in accordance with these policies, you are ensuring it will be used to its full potential, that work is not duplicated, and that funds are not spent unnecessarily"
While waiting for the dust to settle after Senator Daschle withdrew from consideration as Secretary of Health, on March 11, 2009 the Association sent a heavily footnoted seven-page memo to acting CDC director Dr. Besser, describing the history of CDC's engagement in CFS research and our recommendations for corrective measures.
"...progress toward understanding CFS as a chronic condition with multiple triggering and perpetuating factors has stalled and the lack of program staff's experience in dealing with chronic conditions, particularly in establishing and maintaining the type and variety of partnerships and collaborations recognized as being critical to the study of chronic conditions, is undoubtedly one of the essential elements currently missing from the agency's approach to CFS."
We also provided this information to Congressional appropriators and shared concerns that CDC was developing its five-year plan without including a process for obtaining stakeholder input. (Dr. Besser responded on April 22, conveying his assurances that CDC is "committed to supporting a rigorous research program on CFS and to address the requests and concerns of your organization and others.")
A month after receiving our memo to Dr. Besser, the April 27 meeting was announced. The lack of a planning document to examine and respond to left us feeling that the meeting was likely to erupt into a full-blown "gripe" session, especially with the immediate frustration expressed by advocates for the late notice of the date, lack of accessibility, and absence of an agenda and a report draft. We asked CDC leaders to broaden access and helped circulate notices to encourage participation, hoping that CDC would hear from a broad segment of its constituency. The meeting date was also the deadline for one of the NIH mechanisms to apply for funds available under the Recovery Act, so we knew this would limit participation from the scientific community, but hoped they might respond if the deadline was extended. CDC accepted input until May 1, 2009.
All our predictions about the public meeting turned out to be accurate, as others' published accounts of the meeting document. In my 18 years with the Association, I can't recall another occasion on which the patient community was so consistent in its call for change. I'm sure many observers assume it was the result of a tightly controlled campaign of message reinforcement. I suppose that is preferable to believing that all these people reached the same conclusion independently, which is what really happened on that day.

CDC has agreed to release its draft plan on May 27 at the CFS Advisory Committee meeting and on its web site. It will accept public comment on the draft plan through June 30. We continue to encourage all persons interested in the future of CDC's research on CFS to express their views and offer input into the plan. As taxpayers and advocates, it is our responsibility to see that these funds are put to the best possible use to discover ways of objectively diagnosing and effectively treating CFS.
Kim McCleary
President & CEO
The CFIDS Association of America
May 5, 2009
Links to other reports on the April 27, 2009 meeting:
Cort Johnson's About ME/CFS blog:
Hillary Johnson's Osler's Web blog:

Reeves shows his true colors


From: Kristin   Loomis []
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
Anthony Komaroff, MD, Harvard Medical School, Boston, USA  (infections in
CFS   overview)
Brigitte Huber, PhD, Tufts University, Boston, MA, USA
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
Jonthan 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

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
805-695-8465 Fax


On 2/13/08 3:20 PM, "Reeves, William C.  (CDC/CCID/NCZVED)" <wcr1@CDC.GOV>

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 []
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

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


On 2/20/08 3:38 PM, "Reeves, William C. (CDC/CCID/NCZVED)" <wcr1@CDC.GOV>

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

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

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 []
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

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
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
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
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)" <>

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 <>
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

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.
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

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


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?

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.

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
·     immunohistochemistry using HHV-6  early, late and latent monoclonal
·     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.

KSL 5/6/2008

* * *
Reeves asks:
What precisely is the objective of my attendance at the meeting?  What do you want me to do?

What we, as patients, want you to do, Bill, is the one thing that you absolutely don't want to do: listen to research findings that will prove your stress theory is wrong.  We are not over-stressed, emotional basket cases, we have viral damage.
After the patients ripped you a new one at the CDC meeting last week, this is the time to fish or cut bait.  Either do what is beneficial to the patients or get the hell out of "CFS" research that doesn't benefit those of us with ME/CFS, and turn the department over someone who puts patients' health above his own ego-driven need to be right, even to the extent of re-defining CFS so that the patients for whom the definition was written now no longer meet the criteria for their own disease!

Wednesday, May 6, 2009

When Doctors Don't Know What's Wrong

    from "Jerry Campbell" <jerrycamz@YAHOO.COM>


      The following link is to an article written by a doctor, entitled "When
Doctors Don't Know What's Wrong." It is a thoughtful, comprehensive article
which people with complex, often misunderstood syndromes may find useful when
dealing with uncooperative doctors.


Remember Mom this Mother's Day! Find a florist near you now.

Tuesday, May 5, 2009

Patients Smash the CDC

The ME/CFS community came out in droves at the April 27th meeting. They were
  articulate and angry and they didn't hold back. It must have been an
  agonizing time for Dr. Reeves who sat through the entire session as well as
  an eye-opener for the senior officials who remained beside him throughout.

  For my take on the meeting check out 'Bringing the Heat: An ME/CFS Blog" at

  If you made comments to the CDC and would like add them to the list on the
  Phoenix Rising site email me at . Thanks

* * * *
It's about time that we had the opportunity to tell them exactly what we think of them, and I'm glad that so many people willingly gave of their limited energies to do that.  I had other commitments, so I couldn't write a testimony or appear myself, but did have the opportunity to edit someone else's and give input to several people, so I knew my points were covered.
If Reeves was agonized, well, it's time he "felt our pain".  25 years is a long time to wait for proper research to be done.  How much more is that delay in finding a treatment/cure costing the taxpayers, versus if they'd found something to help us when we were still young enough to recuperate enough to return to work?  Personally, I've been told I'll never work full-time again because I was allowed to deteriorate too far without proper medications, and I no longer have youth on my side to achieve the impossible amount of improvement necessary.
CDC needed to hear that we "the consumers" are not happy with them, and precisely why we are not happy with their constant attempts to create a psychological explanation for a post-viral illness.
As I've learned through reading, the polio virus can only be tested for in the first few days; this could be why they don't find an active virus in CFS patients.  But the doctors at CDC, who certainly knew that back in 1984 already, wouldn't consider that possibility; they were too focused on sweeping CFS under the rug as only "depressed menopausal women", even though some of those "women" had names like Steve and Mike and Erik, and some of us were decades away from being menopausal.

Monday, May 4, 2009

CFS/Fibro Awareness Day, May 12

Let's once again flood the offices of our elected officials with letters about Awareness Day.  Those at the top can do something about research funding.  Those at the local level can at least issue an Awareness Day proclamation stressing that this is more akin to MS than to depression.
You may want to include a link to the Obama-Biden Transition Team Report:
Succinctly, it makes the point that while lack of health insurance is a problem, even the best health insurance is no guarantee of proper treatment if the front-line doctors don't know what research shows, e.g., that anti-virals are more helpful than anti-depressants for CFS.


Remember Mom this Mother's Day! Find a florist near you now.

Sunday, May 3, 2009

Awareness Week Posters Available Now


For those of you who just can't wait until Christmas Day to open your presents
click here to see the winning entries of the UK M.E. Awareness Week
Poster Competition, "Come to bed with ME ..." and "If you catch ME
..." designed by Joss Morton

For those of you, who would like to read all the background, from its
humble local origin to the Interantional project it has become, you
need to be registered with ME Free For and logged in.
(Details for new subscribers below)


From the front page,
scroll down to the Hot Links (The cat is a lynx,geddit?),
pawsing (!) only to donate a few pounds/dollars/euros to Antoinette
for her Belfast Marathon,
and click on "ME Awareness Poster Design Competition"
(words or leaping lynx icon will do it).
Click 'til your heart's content on all the links
and see Joss Morton's stunning eye-catching posters.

Now, are you moved to:

1. Print off a few copies and hoof them around your local area? Or, if
you are an M.E. sufferer who is housebound or not so mobile, get a
friend to do it for you? The idea is that it won't cost each person
much money or energy if we share the task. If local people are able to
run off as many copies as they think can get displayed, while they are
out and about, shopping or walking the dog, e.g. the library, doctors'
waiting room, charity shop window, some supermarkets have a local pin
board and any local traders or residents who'll have them in their
windows. If you give them a couple of each design (in case of any wear
or damage), they may put more than one up. Don't worry too much about
ace top quality. I banged out a few with a colour cartridge but just
on ordinary 80gm white paper on an ancient printer and they do the job
fine. Go on, you shouldn't be indoors on this fine Bank Holday
weekend. See how you get on. Any problems, questions, or comments, let
us know at with MEFFA Local reps in the subject

2. Design a "W.H.O. M.E.?" poster, or any other "theme"?  (Joss can
still enter this one and go for a Grand Slam).
Go on, you shouldn't be mooching around the house, complaining of
nothing to do, on a day like this.

Bless you for being willing to help

OK, for the rest of you, just go and laugh your head off at our joke of the day



How to Register

Click here to register and log in to ME Free For

Registration is free, quick, and you may stay logged in. You may update
details, or unregister at any time.  In the rare event of a problem, please
contact me at with "Registration" in the
subject line.

Constructive suggestions are always welcome.

Dr John H Greensmith
ME Free For All. org


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