"It is (ME/CFS) like some great constricting snake that denies its victims the final convulsion." Llewellyn King

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.

Saturday, July 31, 2010

Pathogenic Consequences of Xenotropic Murine Virus-Related Virus (XMRV) Expression in the Development of Chronic Diseases

"In mice, viruses related to XMRV cause B-cell lymphoma usually by insertional mutagenesis activating a cellular oncogene as well as causing chronic neurological diseases.


We will present a case of development of such B cell lymphoma in CFS patients. XMRV-infected individuals with both neuroimmune disease and cancer develop an immune response to XMRV.The isolation of infectious XMRV from prostate cancer patients will be shown for the first time. Pathogenic consequences of this infection will be discussed


Conclusion: XMRV, a retrovirus of unknown pathogenic potential, is infectious in humans."


Repeated Detection of Infectious Xenotropic Murine Virus-Related Virus (XMRV) in Human Neoplasia and Neuroimmune Diseases – Source: 12th Intl. Conf. on Malignancies in AIDS and Other Acquired Immunodeficiences, Apr 26, 2010


wootles!

Friday, July 30, 2010

Which came first? The Chicken or the PWC (Patient with CFS)?

Dr. Jamie Deckoff-Jones provides an update, a treatment philosophy, and an answer to the title of this post.


The Experiment in Progress


Dr. Jamie, thank you for your blog. Than you for your dedication to keeping us informed.


NOTE: Addendum from Dr. Jamie


Dr. Judy Mikovits: Science Paper Redux

"After we developed a sensitive cell culture assay for detection of XMRV, we assayed our cell lines and patient material with a highly sensitive assay (developed and kindly provided by Bill Switzer, CDC) to detect the presence of mouse tissue contamination by the identification of murine mitochrondial cytochrome oxidase by real time PCR. All of the cell lines and 101 patient materials tested negative for mouse contamination." - Quote from article


An addendum to the Mikovits XMRV CFS Science publication explaining why the assays adopted by the negative XMRV CFS papers that followed after October 9, 2009, were doomed to fail finding any XMRV.


Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome (Article Addendum)


Saturday, July 24, 2010

Who's In and Who's Out at the International XMRV Workshop?

by Cort at Phoenix Rising:


Who's In and Who's Out at the International XMRV Workshop?


Lot's of good discussion in the comments regarding the decision about "Who is in, and Who is out". And, imho, the reason for the guest list is bio-politically clear; It helps continue to stall the truth about XMRV. I mean, telling the public that a retrovirus is associated with specifically rare and aggressive prostate cancer is one thing, but telling them that a retrovirus could be the cause of CFS and that 3-6% of the population could be infected unknowingly with it, and that the CDC failed miserably in containing it during the last 20 years is quite another. So, why the big stall? What can they do now, that they haven't already um.. Not done?


What needs to happen at the federal level is to get XMRV screened out of our blood banks before any conclusive announcements reaches the masses. They certainly do not want any panicked or pissed off voters. So, the following has to occur:


1) First they need to create a standardized solution to inactivate the infectious XMRV retrovirus in our blood banks (Even though CERUS has one that works, don't count on our government to contract with them; at least not yet).
http://toadlily-gamer.blogspot.com/2010/05/wpi-and-cerus-confirm-inactivation-of.html


2) The Blood Banks's will also want to empty their inventories Before the solution is implemented because it's expensive (About $70.00 per unit I have read) That takes time as well, since it is a criminally immoral thing to do. They have to do it in a manner that doesn't draw too much attention. Like um.. this.


3) Once the inventories are emptied, the feds will wait UNTIL they have integrated the inactivation solution into all current blood inventories. Only then will they announce anything to jo-public.


The withholding of Alter's paper; and who is invited, and who is not, to the conference is just another stall tactic to give the feds time to clean up the mess the CDC caused by ignoring CFS for the last 20+ years. They Have to have time to empty inventories, make sure remaining inventories are cleaned, and all international distribution activity memos are shredded.


mmo though.

Friday, July 9, 2010

The Paper Chase

This is an ongoing edited daily post, as more and more journalists, bloggers and patient advocacy organizations learn even more regarding the really really shocking news in late June, that the CDC and the NIH/FDA papers would be 'held' back from publication (Then as if by magic, the CDC's paper Was published the next day). All those letters, emails and phone calls may have won the day for us, but time will tell, and we cannot sit back and think it's over. We all know what the CDC is scientifically Incapable of, but politically Very capable of (Hopefully for not much longer).  Please continue to write! See Stalling 101: A CDC Primer for example of a letter to send, with some .gov contacts provided at the end. There are also more .gov contacts listed under the tab above entitled CFS .gov Contact Information.


Bloggers and Advocacy organizations continue to respond and update us since Friday, July 9th, 2010. Thank God for all of you, your making a huge difference.


UPDATES:


Phoenix Rising Dr. J Interview by Cort


A Different Kind of XMRV?


QUOTE: "“In my view the CDC paper should not have been published without a proper positive control, eg patient samples known to contain XMRV. If I had reviewed the CDC paper that's what I would have asked for.” " -- Dr. Racaniello


ENDUPDATES


Hillary Johnson's Rubber meets Road


Hillary Johnson's You Can't Fix Stupid which has one of the best quotes I have seen regarding the CDC's published paper in Retrovirology:


"To be fair to them, in their paper they do admit to most of the reasons their study is rubbish."


Thanks for that whomever was quoted from Phoenix Rising. I am still giggling!


COWARDLY ACTS and EVERYDAY REBELLIONS


The Big Squeeze


XMRV Link to CFS Accelerates Scientific and Media Interest




To sum it all up (But please at least read one of the above a day if you can manage it), Dr. ALter's XMRV CFS paper, according to all the above, may be published within a few weeks uncensored in PNAS.



Friday, July 2, 2010

CDC Boilerplating 101

EDIT: Jump to the end of this for a quick NOTE on how this all may play out.
=========================================================


The CDC is looking awfully transparent during the last year imho. I mean, they are either so very much more incompetent than we knew of, and/or, they are brilliant (at least their lawyers/analysts are).  There just seems to be no reason on this earth why they would contradict the work of the NCI, CC and now the NIH and FDA. It is astounding everyone who knows anything about their history. So, are they That dumb? Imho, no. I am thinking they (The CDC) want their paper and Alter's paper are as far away from each other as much as possible. Here's why.


By holding back the NIH/FDA XMRV CFS association paper this week that confirms the association of XMRV and CFS (Ok, it was said the HHS did it, but well, yeah) and publishing their own, they can slip in and state things in their paper Intentionaly, and how it differs from Alter's (Yeah, I know, but bear with me, and it will make sense). For example, their cohorts in Kansas and Georgia. Their CDC definition and so on. Kinda like when they said this:


The study found no association between XMRV and CFS in this population of CFS patients and controls. However, these results do not necessarily extend to other populations or locations. For example, the authors note that their findings “may not be generalizable beyond our study populations because XMRV infection rates may vary in different regions or locales.


Nicely served CDC. 15/love.


Do you recall this year in February when Bill Reeves, whistleblower and head of the CFS department for the last 20 or so odd years, and a virologist by trade, was shuffled off as a senior advisor to the mental health section of the CDC? Are you curious why his name is on the CDC paper released yesterday?


It's not surprising to see his name on the paper if:


The CDC will start to distance themselves from XMRV/CFS associations, because those +ve XMRV can now be 'excluded' from a CFS diagnosis. This keeps their bread winning psychological treatments of CBT and GET intact, as well as their CFS policies and guildelines. Not to mention it keeps their lawyers happy. Wicked second serve. 30/love.


It gives them (the CDC) the 'CFS' brand, which can help them through those past sticky years of completely denying, and ridiculing a biological basis for CFS. Strong angled backhand. 40/love.


Imho, watch as the FDA/NIH paper is released and see how well the two will split the XMRV and CFS illness sets. Thereby putting those of us with a XMRV positive diagnosis into a brand New classification (ME or something all brand new. In fact, I'd be very surprised to see them use ME. It's too politically dangerous). This way the CDC can keep the 'CFS' brand, and their somatic hypothesis. Air bending Big forehand. Game/Set.


Watch how the CFS department moves into the mental health section of the CDC soon'ish. See how much can be accomplished when CDC applies their Stalling 101 stragety? I also would not be surprised if another CDC department then focuses on XMRV in the CDC's New and Re-emerging Infectious Diseases Division (I may not have the exact title here correct; not enough caffeine yet, and/or Ever :+)). CDC serves again for an Ace at 142 mph. Match.


Anyone have Kenneth Feinbergs phone number?


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NOTE: If the CDC does not find any XMRV in their cohort, it validates their policy that their cohort is just CFS, and it points to those with +ve XMRV as Not part of this cohort (Again proving their point, that if you have CFS, you cannot have any other illness). It's a perfectly devious and brilliant strategy (Unless I am, wrong, and they are just that dumb to try and de-bunk the NCI,CC,NIH and FDA) that validates what they have been (criminally) doing for the last 25+ years (So their friends with the health insurance industry didn't have to pay out disability benefits, and so their Emory freinds could keep getting the easy money). So, yes, as far as they are concerned, the issue is 'dead' for them. Translation for the CDC to the world: CFS and XMRV are mutually exclusive.


The next step for the CDC we might see given this analysis?


1) Of course their independent labs will not find any XMRV in their current cohort. Nor will Alter (If they are having him try and find it)


2) Of course they will not use the +ve samples from this WPI for This paper.


2) They 'might' find and verify that Alter's paper is correct based upon a  completely different cohort. (Is Alter's paper being revised to ensure the cohort reported has nothing to do with the CDC's?)


3) Then, they 'might' get the HIV/HTLV team at the CDC to postively confirm Alter's findings, and/or conduct a Real replication study using other +ve samples, and find XMRV.


Am I giving the CDC too much credit? Or, are they dumb as to try and debunk the NCI,CC, the NIH and the FDA? IMHO, instead of trying to merge the papers into a cohesive agreed result, they are doing the opposite, making Sure the two papers are as far away from each other in results as possible. This way, the CDC's reputation, what is left of it, (and their criminal activites imho during the last 20+ years) is not at as Much risk.

Thursday, July 1, 2010

Got Clout?

Seriously?, has Anyone bothered to tell the CDC authors of the XMRV CFS paper that was published today, that the more they yell "Shotgun!" to get their paper published before the FDA/NIH's, the more they are digging their own grave? The NCI, CC, and now the FDA and the NIH have found positive evidence of XMRV in CFS patients, but they are all wrong and you boys (excuse me, and girls) are right? You've been staring at your own reflections for wayyyyy too long.  You really need to take a step back and look at what's going on with your tail ends:

 


Whoa dudes, what's happened to your um... clout!

But hey, thanks for the laugh I had reading your um... *cough*paper*cough* today. And for those poor co-authors who may have thought that having their names on the same paper as Bill Reeves might be a good way to gain kudos from the CDC echelons of power? Maybe steer their careers upward? Dudes. I mean.. Damn.

And no,no,no... the commercial doesn't mean you should take out more insurance on your incredibly crippled, antiquated, not to mention ineffective CFS policies and guidelines, of which you, and your colleagues at the CDC, are the only ones left in the world that take them seriously. Come to think of it, I'd bet my last dollar Most of your colleagues at the CDC do Not take them seriously. And now I think I get why no one has bothered to tell you of your folly. Look around, and don't be surprised that no one is behind you. Run along now, and ... oops, your rattle fell off. Got duct tape?

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NOTE: A big thank you to Amy Drockster Marcus at WSJ Health Blog for continuing to cover this story (See News Picks on the right side of this blog site). Please stay with it Amy, we need you.

Wednesday, June 30, 2010

Stalling 101: A CDC Primer

And so it begins...

Seems the cdc for some inconceivable reason (inorite), was unable to find XMRV in CFS patients according the the WSJ:

Chronic-Fatigue Link to Virus Disputed

Go figure.

"... Scientists at the Food and Drug Administration and the National Institutes of Health, including NIH infectious-disease specialist Harvey Alter, recently finished research that came to a conclusion similar to that of the Science paper—that XMRV, or xenotropic murine leukemia virus-related virus, is found in the blood of chronic-fatigue syndrome patients."

I've been waiting for this; and I think it's safe to say, this was expected. I knew the CDC would find as many ways as possible to halt, or stall as long as possible, the findings of associations between XMRV and CFS.

"Separately, scientists at the CDC, led by microbiologist William Switzer, concluded in a paper in another journal, Retrovirology, that they couldn't find XMRV in the blood of people with chronic-fatigue syndrome, according to people familiar with the situation. "

"...In an email between scientists familiar with the situation, viewed by the Wall Street Journal, a researcher said the two teams were asked to put their papers on hold because senior public-health officials wanted to see consensus—or at least an explanation of how and why the papers reached different conclusions, said the people familiar with the situation."

God forbid the CDC and the NIH didn't ride tandem from the get-go on this. Not surprised? Neither am I. So yeah, expect lots of waiting until 'consensus' is obtained. Can we please get someone with clout to fgure out Who lobbied for the delay of the paper(s)(Both the CDC and teh FDA/NIH were delayed according to WSJ), and then Who gave the go-ahead to publish the CDC paper that was released today (EDIT July 13,2010: Thank You Hillary!: Rubber Meets Road)? The plot sickens...

In the meantime? Please email AND snailmail (Since I don't trust emails ever find who they should in .gov) the following letter:


========================
To the Inspector General at HHS (or whomever):

I learned from the Wall Street Journal on June 30,2010, that there is conflicting results between the CDC and the NIH's research regarding an association between XMRV and CFS, and that both studies results are not being published as intended.

While I am concerned about continuity between the CDC and NIH, I do not think it requires withholding of the results. I clearly understand that the association between CFS and XMRV is in its' early replication phase by other organizations besides the WPI, the National Cancer Institute and the Cleveland Clinic, who originally authored the XMRV/CFS association in Science, October 9,2009, and I find it very unfortunate that the CDC and NIH did not work in tandem on the related studies.  

Both results being published would only bring more focus on which study was possibly accurate, and/or inaccurate depending upon how each study was conducted, accordingly given possibly different assays and cohort methodologies. Accurate and inaccurate results are both crucial to understand how to proceed with the ground breaking findings of an possible association between XMRV and CFS patients.

If it is in your power, please help release the hold on these studies, and allow publication as and when it was intended. As a patient with CFS for 17 years, I cannot help but feel this delay will grind progress on CFS to yet another halt (Please modify to represent your personal CFS experience). Please let the science keep it's momentum on this crucial subject without prejudice, and without delay.
=====================
 
Kathleen Sebelius
The U.S. Department of Health and Human Services
200 Independence Avenue, S.W
Washington, D.C. 20201
Kathleen.Sebelius@hhs.gov


Office of the Surgeon General
5600 Fishers Lane
Room 18-66
Rockville, MD 20857
Telephone: 301-443-4000
Fax: 301-443-3574


Dr. Wanda K. Jones
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Office of Public Health and Science
U.S. Department of Health and Human Services

Hubert H. Humphrey Building, Room 712E
200 Independence Avenue SW.
Washington, DC 20201
(202) 690-7650 (Voice)

(202) 401-4005 (FAX)
wanda.jones@hhs.gov

These are found on the CDC's website as of today. I used the vanilla address for lack of specifics found there (bld numbers, mailstops etc). I'm betting they can find them.

Rima Khabbaz, M.D.
Acting Deputy Director for Infectious Diseases
1600 Clifton Rd.
Atlanta, GA 30329

Thomas Hearn, PHD
Acting Director, National Center for Emerging and Zoonotic Infectious Diseases
Centers for Disease Control and Prevention
1600 Clifton Rd.
Atlanta, GA 30333

Anne Schuchat, MD (RADM, USPHS)
Assistant Surgeon General, United States Public Health Service (USPHS)
Director, National Center for Immunization and Respiratory Diseases (NCIRD)
Centers for Disease Control and Prevention
1600 Clifton Rd.
Atlanta, GA 30333


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Sunday, June 27, 2010

Dr. Unger's Response to CFSAC in May, 2010.

I had read this on Friday, then forgot where i had read it. I didn't want to lose this... as it's kinda well... suspicious given what the CDC is 'supposed' to do.

At any rate, Dr. Unger stated this at teh CFSAC meeting in May, 2010.

"Dr. Elizabeth Unger asserted that her program at the CDC remained committed to theories on metabolic syndrome and stress response, despite the published link between CFS and XRMV"

orly? Are you sure that's your job?

Here's the report

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Thursday, June 24, 2010

The BIG One!

An update from Hillary Johnson from her Osler's Web Blog concerning the replication confirmation of CFS/XMRV association news from the NIH and FDA.

WE ARE VALIDATED.

Now to work on the Vindication part!

But for now, I never thought I would see this. Although I kept telling myself that the CDC's higher echelons of power couldn't keep this out of the news for long, behind my eyes there was that teeny glimmer of doubt.  I am off to sit on Dr. Reeves porch now, with my little sign saying "WHAT SAY YOU NOW DR. REEVES?"

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