"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.

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

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)

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.


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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Confirmation from the NIH on the validity of the XMRV CFS Association

It's happened. I cannot tell you all how this changes the world as we have known it for 25+ years.

"According to a press release issued by a Dutch magazine, one of the slides presented at a recent workshop in Zagreb by Harvey Alter, chief of the infectious disease section at the NIH’s clinical center, supports the link between XMRV and CFS reported last year in Science."

Wall Street Journal:
Further Evidence of an XMRV-Chronic Fatigue Syndrome Connection?

Dutch Press Release:
Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'

"Gendringen, NL (MMD Newswire) June 22, 2010 -- The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture. "

WPI: In The News

It's beginning!!

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Tuesday, June 22, 2010

Quoted from Dr. Dekoff-Jones, MD., from her response to the article in the Chicago TribuneHope outrunning science on chronic fatigue syndrome.

"... Dr. Sax, quoted in the article, is trying to frighten people from getting the help they need to get himself off the hook. His AIDS patients have a much better quality of life than CFS patients do. Has he ever treated even one CFS patient? I bet not. What he said is inaccurate fear mongering. He says it's worth it with HIV because without treatment there is a horrible death. With CFS there is a horrible life."

Response to the Chicogao Tribune article on June 7, 2010.

Thank you Dr. Dekoff-Jones!

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Monday, June 21, 2010

One Giant Leap for CFSkind

One smart move from the AABB:

"The AABB Interorganizational Task Force on Xenotropic Murine Leukemia Virus-Related Virus reviewed the risk of transfusion transmission of XMRV by individuals with chronic fatigue syndrome (CFS). The task force presented its recommendations to the AABB Board of Directors, which approved an interim measure intended to prevent patients with a current or past diagnosis of CFS from donating blood or blood components."

Recommendation on Chronic Fatigue Syndrome and Blood Donation

Now UK, what will you do?

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The Controversy Continues...

From Medscape:

"Although several XMRV assays have been developed, "at present, there is no standardized, validated assay for the virus," said Simone Glynn, MD, director of the Blood Resources Program of the National Heart, Lung and Blood Institute (NHLBI) and cochair of an NHLBI scientific research working group formed to evaluate whether XMRV poses a threat to blood safety."

Good article explaining recurring investigations into XMRV's possible ramifications for human beings.

Controversy Continues on Whether XMRV Retrovirus Contributes to Chronic Fatigue Syndrome

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Thursday, June 17, 2010

Blood Product Distribution 101

This was published in 1989. I wonder if anything has changed.

Did you know that...

"While U. S. donors are the source of more than 60 percent of the world's plasma, foreign owners dominate the business. Four of the six largest plasma companies in the United States are owned or controlled by foreign corporations based in Japan, West Germany, Austria and Canada."

and that:

"In this international market, it is not uncommon for plasma to change hands several times. Sometimes plasma brokers - middlemen who profit by bringing together those who have plasma with those who need it - are involved. Even in industry circles, brokers are considered a secretive lot. There are no lists of brokers and finding one is no small task. Locating one willing to talk is even harder. Asked to describe his business during a brief telephone conversation, one of them, Eric Jarrett, a Woodland Hills, Calif., broker said: "We sell plasma to whoever wants to buy it."

More here:


Couple this distribution methodology with XMRV blood supply potentials, and we've got a serious problem. Even worse than with HIV, because if I am thinking correctly, blood product brokers didn't exist nearly as much as they do today. It's like the diamond industry in Africa.  Illegal brokerage of the diamonds funded civil wars that were responsible for the mass killing of thousands and thousands of innocent people in, and around Sierra Leone. It wasn't until De Beers was under tremendous pressure that they (the diamond industry) put together a policy to eradicate the illegal process as much as possible, but in the case of the blood product brokers in the US, there is no policy, and there may be no way of knowing where the blood product comes from after it is in the hands of these brokers.

Interested yet?  We need to be, or our families, and your children are at risk with contracting XMRV.

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Blood center in middle of debate on chronic fatigue "Syndrome"

Yeah, I quoted "Syndrome" because it isn't used in the article subject.  It is such a travesty that the US cannot seem to grasp that fact, that we are NOT chronically fatigued. But why should they? The CDC has been framing this term to be used as much as possible for the last 20+ years.  Patients with cancers, and clinical depression (to just name two) can be chronically fatigued. Their bodies are under assault and it goes without saying of Course they will be. But chronic fatigue is to CFS/ME as a match is the a nuclear bomb strike. The CDC does not call Tuberculosis "Chronic Coughing Syndrome", or even call Parkinson's Disease "Chronic Shaking Syndrome". Now, since the 1990's, the "Syndrome" part of their ridiculing CFS name as been dropped by medical and journalist alike, subsetting us once again into a category where we do not belong, and as such, are denied access to proper medical support, treatment, and disability benefits. This makes the boys in the backroom of the health insurance industry squeal in glee, because with this name, they can deny any long term disability benefits.  But you all have heard me talk on this point et. nauseum, and I digress:

Along with New Zealand, Canada and Australia... now "Dr. Louis Katz, executive vice president of medical affairs at the blood center and the Scott County Health Department’s medical director"... states that:

"The Mississippi Valley Regional Blood Center in Davenport could be among the first in the country to ask its donors with the syndrome (ooo, he said syndrome! typo? =p) to consider a self-imposed ban."

Full article here

"Dr. Louis Katz, executive vice president of medical affairs at the blood center and the Scott County Health Department’s medical director, is a member of a 'federal' task force studying the issue. The task force was organized by AABB, an international association that includes virtually all the blood centers in the United States."


So, we are just 'chronically fatigued' according to the article, and deserving of no disability benefits, or medical treatments that have been working outside our country (Search Ampligen on this site), and yet they don't want us to donate blood.  Since when are people who are chronically fatigued capable of possibly transmitting a retrovirus? O yeah, XMRV.  And so, we should impose a 'self ban' on ourselves until they have the guts to make it official.  Maybe the next Blue Moon you might expect it, but don't count on it. They don't want to start a panic, so they first get a standardized test (already available, but they won't contract with the manufacturers. Search CERUS on this site), then they will have to run all the blood bank products against it (including plasma). That is a huge expense. Instead, they 'might' try and empty as much of the inventories as possible beforehand, to bring the cost down. Bayer did this with HIV, and shipped off a huge amount of their inventories to third world countries.

"2 Paths of Bayer Drug in 80's: Riskier Type Went Overseas"

Hmmmm, anyone have a clue about how we might go about understanding Bayer's current blood products distribution activities?

So, imo, don't expect the US to be willing to make an official statement concerning banning CFS patients from donating blood anytime soon. But I am pleased at least that teh subject has been talked about by Dr. Katz. The more awareness the better.

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Saturday, June 5, 2010

"What About ME?" Promotional Trailer

The second promo was released this week. A Very special thanks and **hugs** to my friends Erik Johnson and Mary Sweitzer for being in this video and representing us all; more big **hugs** to Andrea Whittemore, Dr. Peterson, Dr. Judy Mikovits, and Annette Whittemore. ALL of you spoke so many truths about what it means to be ME. Thank you. Thank you.

The UK trailer can be found on the What About ME? website.

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Thursday, June 3, 2010

New XMRV Diagnostic Test to Be Available by July.

Gogogo VipDx and WPI

WPI says New XMRV Diagnostic Test to Be Available by July 1; Announces Arrangements for US & European Testing

How appreciative I am for you all. You give me so much hope!

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*.* .♥¸.•'`♥ƸӜƷ Thank you!ƸӜƷ
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