I have now received five independent e-mails in the last 36 hours from visitors to this site alerting me to a web site called, "CDC Chatter," apparently a place for CDC employees to make anonymous posts on topics of interest to them. They've sent internal posts they've copied from this site that are critical of Reeves and his CFS program.
It's odd that this CDC site has never been noted on Co-Cure or elsewhere. I was first alerted to this site on Saturday, October 31, the day after J. Mike Miller, Bill Reeves' boss and offically, the Associate Director for Science, National Center for Zoonotic, Vector-borne, and Enteric Diseases at CDC, sat stoically for two working days at the CFSAC meeting. The trim, gray-haired Miller looked directly at those who testified in front of the committee, and spent much of the rest of the meeting staring at the table in front of him, either doodling or taking notes. He remained impassive throughout. He reported that the retroviral program at the agency was "taking the lead" in an effort to replicate the Whittemore Peterson XMRV results. He said the agency was looking at samples from Wichita, Georgia and WPI to confirm the results.
"We're in the process of restructuring programs," he said, adding, "A number of options are being considered."
In response to criticsm from members of the committee about Reeves' recent comments to the press, particularly Reeves' comment that he did not expect the agency to be able to replicate the WPI finding of XMRV in patients, Miller said, "Dr. Reeves is not doing the lab work," to which someone replied, loudly, "Thank God," a comment that was met with wide applause. "Those of us in the research arena know that you really haven't seen anything until you've seen it twice," Miller persisted. The WPI work has been confirmed in three labs already.
Below I've reproduced the first note I was sent about this site, which points out that it's possible for people other than CDC personnel to make posts. He writes:
"I found this link in CFSFMExperimental on Yahoo. The link appears to be a chat area
of CDC employees. Thing is, I checked the interface and it appears that outsiders
can post anonymously. So that makes me wonder how many of these posts are internal.
I also checked the domain registration, and they are using an anonymity service. I
don't see why the CDC would do that.
OTOH, it could be a place for CDC employees that was set up by one of their units.
And the tone of most posts is not the way pwcs post. We usually post as frustrated
people facing an invincible force. The posts there say the public is so upset that
Reeves is going to fall.
Anyway, I can't say I found anything really useful there. But I thought I'd send it
anyway, just in case you want to see it.
http://www.cdcchatter.net/index.php"
Four more people have sent me their copies of posts to this website, as well as links, apparently copied from this agency "chatter" website. My correspondents report they copied the comments before they were taken down from the site.
Currently, the site states:
COMMENTS ON THIS STORY HAVE BEEN TURNED OFF AS THEY HAD VEERED TOO MUCH TOWARDS PERSONAL ATTACKS
Most recently, I was sent a link from someone who left a comment on this post (below). This latest link appears to be the most comprehensive collection of posts on this topic--the CDC's failures in the realm of performing virological studies in CFS--and so I am posting the link
here. As with everything to do with the Internet, this material is difficult to verify, but it is interesting and certainly, the concerns and observations here seem credible, even if anonymous.
I'm posting them here on a "for your interest" basis, with thanks to those who sent them along to me.
If indeed they were written by CDC staff, these commments are, as someone wrote to me, potential evidence--it it was needed--that the CDC is not a monolithic entity, even if the agency's public affairs staff works to present CDC to the public as an agency that speaks with one voice.
Finally, the most comprehensive link (above) comes from Stephen Ralph, founder of MEActionUK, who writes,
"Please note:
This CDC Chatter Blog thead is believed to be genuine and is posted here as my group consders the content below - content now removed from www.cdcchatter.net - to be in the wider public interest.
Sincerely,
Stephen Ralph DCR(D) Retired
Founder of MEActionUK
Fighting for Fundamental Change since May 1999"
And there you have it. Many thanks to Stephen Ralph, and to the people who sent me comments from this website over the weekend.
Comments
Having suffered another mis diagnosed and misunderstood illness Lyme Disease, I can see so many parallels of political mis behaviour in taking both these diseases seriously.
Keep informing us and many thanks for all your work. One day the truth will out and please God heads will role in UK as well as USA. The sooner the better so that the children especially can get the treatment they need.
You may find this of interest.
http://www.meactionuk.org.uk/CDC_Chatter_Blog_-_Updated_021109.htm
Regards
The message about the brain damage, H1N1-CFS combined being deadly and not letting the public know about the blood supply just scares the crud out of me. I have three perfect grandbabies that I may have passed this to and we can't figure out whether to vaccinate or not. If you have any input on the vaccination danger, please tell me. Please. We've read it's not dangerous at all, and we've read that it can be deadly and don't know which way to turn. If they were your grandbabies, what would you do?
I also found that if you go to Google and search for:
http://www.cdcchatter.net/index.php?name=News&file=article&sid=769
just below the search results, on the right, if you click on "cached" it will take you right into the closed thread on the CDCchatter website and you can still read all the messages.
I think this is legit, that they really are from the CDC. It just 'feels' like they are. JMHO, though.
http://www.law.duke.edu/journals/dltr/articles/2006DLTR0017.html
A little more than halfway down the page under the heading "Footnotes", see item number 7. Seems that the posters of cdcchatter.net have had 'issues' in the past as well, and yes, they are the real CDC employees. Were they not truly CDC employees, I doubt they would have made it into the journals of Duke University's law department.
No longer skeptical,
Lucie B.
And on a blog for the National Journal, Beltway Blogroll, in their archives, near the bottom of a page, I found this:
"April 19
In extended remarks entered into the Record, Rep. Hank Johnson of Georgia recognized Bob Keegan upon his retirement as deputy director of CDC's global immunization division, including his work in starting CDC Chatter, "an unofficial blog for CDC employees."
Here's the link, for those like me who need to see it with their own eyes:
http://beltwayblogroll.nationaljournal.com/archives/blog_power/
So, a fairly well-known political type journal that lets one of their bloggers post as he will more or less, and finally! A name. Bob Keegan. A traceable source.
I don't know about anyone else, but now I'm sure beyond a doubt. I'm going to drag my sorry self off to bed now. I've been up a lot longer, and pushed myself a little harder than I've been able to for awhile now. And I'm sleeping with the lights on. Because after the digging, I feel a lot less like a mushroom than I have in a long time.
Hey Hillary? I think that the discovery of these messages just might turn sorta big...what do you think? Oh, and thank you for the opportunity to help let other people know, too.
Lucie B.
Someone needs to print out a hard copy of the cache before it updates and disappears. ( my iPhone won't print ). This is nuclear news if it's true and appears to be... And now it's erased from the "live" page... Something is very wrong at the CDC ... CRIMINALLY WRONG !!
I do believe that this is legit. Too many people making the typical nasty comments directed at the CFIDS sick people as usual and some that seem to be truthful and trying to do their jobs. Also note the other forum posts, esp. the ones on Why the CDC can't attract top notch talent, etc. They have major moral problems and it shows on that site. Look at all the other forum posts and not just the CFS one. Note the massive complaining about management and other organizational issues with other departments and their management. The CFS posts are real. And some are so stupidly nasty I wanted to cry remembering those same comments directed at me for the last 15 miserable years. Thanks Hillary - Always love to read everything you write. S
Since anyone can post comments anonymously on this site, it's hard to tell which comments are from actual employees (except for cases where the writer states he is - but even that, unfortunately, can't be proved). I'd like to hope that many are genuine, although the one from the guy who said he's got "3 children in college and a wife out of work" sounds a little off to me...a real employee wouldn't worry about being anonymous and then mention family characteristics that could easily identify him (unless the facts have been changed as a smokescreen). But if this comment is for real, it's very damning for the CDC.
Dorothy: Accorind to the Wiki on CDC, as of 2008, staff numbered ~15,000 (including 6,000 contractors and 840 Commissioned Corps officers). That is a great deal of people and probably a number of those people have family members with CFIDS or know people with CFIDS. Also, having kids in college and a wife out of work would NOT be a dead give away on someone's identity as it would be most common in this economy. When I read that comment I just assumed the person was mad and scared at the CFS people for further damaging the CDC's already badly damaged reputation. The CDC is in trouble for a whole lot of things including buildings that are so extravagent that Congress (and I think GAO too) has looked into the expenditures. Now new buildings are going up for the campus that do not even HAVE labs, just more office space. There is so much waste of money at the CDC that anyone and many of the CDC would be mad at the decisions made that could put their jobs in jeopardy.
I do admit that it is rather curious that NONE of the CFIDS advocates, investigators, writers, sick would know about this site until NOW. Curious timing, I would say.
Thank you Hillary. Got your new Osler's Web book for gifts to the non-believers for X-Mas. One of the most thorough books I have ever read on any topic. Keep digging and reporting, we need you! Lisa and Richard
The really uncomfortable part is that I'm afraid he's actually telling the awful truth. And no one there said any different. I kind of wish they had.
Of note from Dr. Meisel's testimony:" A Congressional investigation is long overdue to explore potential allegations of malfeasance or intentional misconduct at CDC..."
Jill
------
Public Comment of Dr. Lee Meisel, IACFS/ME Board member, to the
CFSAC October 30, 2009)
I am a physician and attorney with 20 years of experience in the biotechnology and specialty chemical industries. I have also been a CFS patient for the last
20 years. I am currently a director of both the IACFS/ME and Epiphany
Biosciences and have previously served as a director of other biotechnology and not-for-profit companies, including the HHV-6 Foundation.
This illness is at a critical juncture in its history both in terms of (i) major
research findings that have the potential to transform the lives of millions,
and (ii) the politics that could allow ground breaking research to blossom and
flourish into game changing research.
Two studies reported over the last couple of months have brought us to this
threshold:
1. The publication this month in Science of the detection of XMRV (xenotropic murine retrovirus) in CFS patients is a landmark study.
2. The presentation last month of the valomaciclovir trial at the ICAAC
Conference (Interscience Conference on Antimicrobial Agents and Chemotherapy) marks the first in vivo demonstration of an anti-EBV effect of a drug in phase 2, FDA-approved clinical trial.
In the valomaciclovir trial, the median EBV viral load in the saliva of patients
treated with valomaciclovir was undetectable at the end of the treatment period and reached statistical significance with a p value of 0.002. Clinical course of illness was also significantly improved in the valomaciclovir group with a p value of less than 0.05.
The potential implications on EBV infectivity in infectious mono are obvious.
With approximately 9-19% of patients progressing to meet criteria for CFS
(Isaacs 1948; White et al 1998; Buchwald et al 2000; Hickie et al 2006; and Katz et al 2009), the design for the next valomaciclovir trial will include an
assessment for incidence of CFS at 6 months post-symptom onset.
With sufficient levels of funding from public and private sources to pursue a
comprehensive natural history trial in infectious mono, the next valomaciclovir trial would be able to include assays of XMRV, other viruses of interest and promising CFS biomarkers to gain a complete understanding of the early phases of CFS for the very first time.
Twenty-five years after the Lake Tahoe epidemic, we have finally built the
foundation for CFS research to literally explode with innovative new findings,
but for the absence of a productive research program at CDC and ample, dedicated research funding allocations from NIH.
The CDC’s Five Year CFS Strategic Plan and the levels of CFS research funding at NIH are not just woefully inadequate. They are an embarrassment. But this
wouldn’t have to be the case if political will was exercised to make the
necessary organizational and cultural changes at CDC and NIAID (National
Institute for Allergy and Infectious Disease). One of the most glaring
deficiencies of past CDC stewardship has been the failure of the CDC to develop extensive collaborative relationships with extramural researchers. Worse yet, NIAID’s research plan for CFS is virtually non-existent. A CFS research program housed in the Office of Women’s Health is not a substitute for a robust CFS research program headquartered in NIAID.
The ideal clinical trial as described above that studies that natural history of
infectious mono as it morphs into CFS would be the perfect opportunity for the CDC and NIH to develop an intensive, interventional, natural history study that would be truly transformative. Unfortunately, the leadership of the CDC and NIH when it comes to CFS is neither visionary, nor have they prioritized CFS research.
Mike Houghton, discoverer of hepatitis C, Lasker Award winner and Chief
Scientific Officer of Epiphany Biosciences, recently asked me three questions:
1. Why don’t CDC and NIH have programs that diagnose and monitor CFS patients to establish the characteristics of CFS in patients with an onset consistent with
an acute infection?
2. Why aren’t all available pathogen signature tests used by the CDC and NIH in this population to establish the infectious etiology?
3. Why hasn’t the CDC and NIH monitored the virological and host signature
status of at risk patients and compared the patients who resolve their infection to those who do not?
I had no answers for Mike to any one of these questions, except to say that a
private foundation, the Whittemore Peterson Institute, has been working very
hard to try to address your questions. This type of research program has been ongoing for many years for hepatitis C and HIV/AIDS and now needs to be applied to CFS in an expansive and systematic manner. Such a program requires tremendous resources and technical expertise. CFS patients deserve the same degree of scientific rigor that has been applied to the study of hepatitis C and HIV/AIDS.
This is our moral imperative. A Congressional investigation is long overdue to
explore potential allegations of malfeasance or intentional misconduct at CDC and to explain why the CDC who has been continuously working on CFS research over the last 25 years has been unable to uncover what a private foundation spending less than $2 million has been able to discover in two years.
The CFS leadership at the CDC and NIH has alienated a great number of CFS
stakeholders. Let us seize this moment in history as it presents itself to us.
The fruit on the vine could not be any riper. It is time for our government to
finally do the right thing and serve its constituents, instead of itself. It is
time for the CDC and NIH CFS research programs to be re-built from scratch, from the ground floor, with a new culture and with new leadership.
Lee Meisel, M.D., J.D., M.P.H.
------
Dr. Meisel testimony webcast URL - http://www.youtube.com/watch?v=8NMhksB68zw
.
Also thanks to all who brought this information on the CDC Chatter to light. Wow - can you spell "smoking gun"? I cannot read it all at once and therefore don't get the full impact, but there are excerpts that are riveting even to an impaired person like myself.
What is most important to me is the organ system involvement seen in CFS/ME/XAND. I know a person who, besides the CFS part of being sick, has documented 5 different ways his heart has deteriorated (none of them related to CAD or cholesterol), 2 seemingly unrelated brain changes, and kidney disease. Of course most MDs place the guilt for these changes on just getting older, although no one seems to want to try to explain the brain anomalies.
I urge all people with CFS/ME/XAND to make arrangements for brain excision and storage after their deaths. Someone, sometime, somewhere will want to study how horribly scarred our brains are, and I don't mean just psychologically.
That William Reeves be prosecuted civilly and criminally for torts and Crimes against the United States of America,
TO WIT:
-Treason;
-Abuse of Public Office;
-Perjury to Congress;
-Violation of Civil Rights Act;
-Violation of Americans with Disabilities Act;
-Misappropriation of Funds;
-Hate Crimes; and
-generally being a pitiful excuse for a primate.
and that the US Attorney General formally recommend to the World Court and the International Court of Human Rights that he be prosecuted for
-Crimes against Humanity and
-Violation of Human Rights.
His sentence should be to
-have all his assets seized and donated to the WPI;
-stand at the Washington Monument with a sandwich placard on him reading "I am guilty of destroying more American lives than Osama bin Laden" and hand out literature describing his crimes and the truth about ME;
-sleep in a cardboard box outside Union Station for 20 years (don't waste anymore tax dollars on this clown by sending him to prison; although reasonable people could disagree on this one).