Monday, December 7, 2009

CDC Damage Control: ME/CFS Research Group Relieved of Duties

In a stunning move, responsibility for XMRV research has been taken away from the ME/CFS working group within the CDC, and re-assigned to the division of HIV/AIDS prevention.  This group will be in charge of replicating findings of the Whittemore-Peterson Institute, rather than the group under the control of Dr. Reeves.  The move is highly significant: it appears that the CDC is now acknowledging the serious nature of XMRV.

The CDC will be part of an interagency working group on XMRV, led by Dr. Jerry Holmberg.  A three-part study will be initiated:


  1. The first part will consist of standardizing and validating laboratory methods and reagents for XMRV testing.  This stage will use samples provided by samples collected by Dr. Judy Mikovitz.  The intention is to create an FDA approved test.
  2. The second part will test a much larger sample than the initial study, trying to determine the prevalence of XMRV in the general population, and the blood supply.
  3. The third part will consist of how XMRV is transmitted, how it causes disease, and how it affects various subgroups of the population.
The forceful demotion of Dr. Reeves is a sign that the CDC is in damage control mode.  The HIV/AIDS prevention group in the CDC has many capable retrovirologists, who can provide years of expertise.  In my opinion, this turn of events should lead to balanced, common sense research.

37 comments:

  1. wonderful
    completely

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  2. What is the source of this information and who is writing this interesting blog ? Helle

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  3. I hate to sound like a downer. but I see a different side to this coin..

    Reeves had ALREADY told us that HIV/AIDS was NOT in his CFS working group..
    and that HE did NOT work on Viruses... remember all of those long many emails sent
    back and forth between him and another about WHY he would not come to a
    conference about HHSV or any such thing...?? about a year ago???

    They have NOT yet declared that THEY believe that XMRV "IS" the Cause of ME/CFS.
    This just says to me... that they could also be giving Reeves "cover" because
    they are allocating the research of a retrovirus to the HIV/AIDS as it should be..
    They are "Simply" researching a virus in the th Viral Dept... and they don't feel
    that ME/CFS is a virus... get it??? It's from Depression.. .Remember? ??

    I don't see HOW this YET changes anything....
    It'll take a BETTER argument than this...
    PLEASE...Convince me...I "beg" you.....

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  4. Yeah, this isn't a demotion of Reeves yet. It's just the CDC trying to replicate the WPI's findings. CDC's CFS program is a little POS stuck in a broom closet, they have no way of replicating any findings of merit.

    The big issue isn't who is in charge, a well-trained monkey could do the actual testing for all I care, it's the samples used that is the central issue. No matter what crappy research CDC does, if it were done on actual CFS patients it wouldn't be a problem. The problem is they don't use actual CFS patients in their research, but instead people selected using psychometric questionairres and who only need to satisfy the criteria of reduced activity as a result of emotional problems even if they don't have a decrease in their physical functioning.

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  5. Agree with the above that this XMRV testing should be done in a real lab setting and Reeves people don't do that - they do fake science, psychobabble wasteful spending "research" and contractor $$$$$ padding.

    XMRV is a virus and should be done in the proper lab setting. Reeves is still out there and still capable of creating problems for us. So continue to try to nail him by hitting Congress, the media and even emailing Thomas Frieden at CDC. Hit GAO and the Inspector Generals for DHHS and even CDC. Get at ABT Assoc and Emory Uni MIND-BODY Program for waste/fraud/abuse potential of CDC/CFS funding. Connect Reeves to them via money and slay him that way. Go after the CDC as a whole - their reputation stinks so badly right now that it is easy to do. They lost credibility with the public big time by screaming about yet another epidemic that did NOT happen. The public does NOT believe anything now that comes from the CDC - so USE THAT to get at the CDC and then to Reeves and the morons in CDC/CFS/Contractors.

    Sorry, but having this lab do the work means nothing really. Have to keep hitting at Reeves and the CDC and hitting HARD.

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  6. I beg to differ about the dismal interpretations of this. To have this potential plum taken out of his hands is, in the language of bureaucracy, a huge slap. It also means that where the big money related to CFS is going, assuming the link actually checks out, is completely out of his hands. If you don't control the money you've got no power.

    Of course I agree that the pressure on CDC related to Reeves and the CFS program should be unrelenting so this move isn't a coverup of the larger management issues, such as why this shame was allowed to go on for so long, why someone with so little broad expertise was allowed to direct this unit, etc.

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  7. @John - More good news. The samples being used include 100 provided by the WPI, per the CFIDS Association (tried to post a link, but can't).

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  8. Also @Helle - This information was posted on the CFIDS Association of America's CFIDSLink, December '09 (You'll have to Google it, sorry, but again, can't post link!)

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  9. I am not a scientist and what I know about the history is from Osler's Web, so please elucidate for me:
    When CDC attempted the replication of Dr. DeFreitas' retrovirus finding, it was done by Tom Folks, then chief of CDC's retrovirology branch (devoted to studying HTLV 1 & 2, but not HIV). As told in Osler's Web, he and his assistant did not follow DeFreitas' protocol to the letter for finding gene sequences by PCR (specifically they used replinase not taq-polymerase and had the specificity so dialed up they lost sensitivity and they repeatedly froze and thawed each sample according to DeFreitas). They refused DeFreitas' invitation to come to her lab and do the experiments along side her so she could correct their technique and primers.
    They published their negative findings.
    They used the samples provided, but apparently were able to sabotage DeFreitas' results and her career by having an attitude that DeFreitas' results were bogus and then doing the experiments sloppily because they were thinking "it's bogus, so why go through all the hoops she's trying to make us jump through if it's going to be a failure to confirm her findings anyway?" This bias was apparently adopted by Folks and his assistant as not knowing much about ME (CFS) themselves, they were influenced by the attitude in general at CDC and specifically of Stephen Straus and Anthony Fauci at NIH that ME sufferers were just a bunch of neurotic middle age women with no physical pathology.
    The lab tools have improved much since then. Is the improvement such that they will not be able to easily "jury rig" their method to get negative results? Please enlighten me.

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  10. I think that it was especially good that the WPI collaborated with the National Cancer Institute and the Cleveland Clinic. This will give their work more credibility at the CDC as opposed to research done by the usual biased CFS researchers (sarcasm intended here). If the screw up I don't think Mikovits will allow herself to be trashed. What I do worry about is how the CDC defines its CFS sample, i.e, rigorously or the inane, fuzzy Reeves version.

    michael

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  11. I posted this on another site, today, where some readers had not been aware:

    From the Whittemore Peterson Institute Facebook Notes pages:

    Posted by Whittemore Peterson Institute

    Fact #8

    Wednesday, November 25, 2009 at 8:44pm

    XMRV is Not the retrovirus identified by De Freitas et al.

    the publication and patent submitted by De Freitas et all clear describe the molecular characteristics of a retrovirus that is not a gamma (type C) retrovirus. The patent submitted for the retroviruses states "

    "Chronic Fatigue Immunodeficiency Syndrome associated virus, hereafter referred to by the name CAV may be morphologically characterized as a retrovirus, particularly a non-C retrovirus which is capable of infecting humans. Electron microscopy of viral particles formed in infected human cell cultures suggests that CAV is a non-C type retrovirus because of its diameter, morphology, formation and location of intracellular virions. The Electon micrographs of XMRV shown in Lombardi et al clearly depict a budding type C retrovirus of 90-100microns The DeFritas patent goes on to say "More specifically, CAV-infected cells could be characterized by electron-dense circular virions, some with electron-luscent cores and others with electron-dense cores, associated with the rough endoplasmic reticulum and inside large abnormally distended mitochondria in the cells. All particles are the same shape and size, 46-50 nm. No extracellular virus is observed. No forms budding from the cytoplasmic membranes are observed.

    Thus, CAV-infected cells could also be charcterized by the presence of intracytoplasmic particles"Gamma (type C) retroviruses are 90 1100uM as shown in Lombardi et al and all are shown to consist of electron dense cores and specifically to bud extra-cellularly not intracellularly.

    The data describes in the Defreitas patent can be found at:
    http://www.ncf-net.org/forum/revelations.html

    These data are indisputable that XMRV is NOT the retrovirus described by De Freitas et al.

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  12. "The forceful demotion of Dr. Reeves is a sign that the CDC is in damage control mode. The HIV/AIDS prevention group in the CDC has many capable retrovirologists, who can provide years of expertise. In my opinion, this turn of events should lead to balanced, common sense research."

    -->>>The above ASSUMPTION would not be correct because the CDC/CFS/Reeves people do NOT do any lab work. Instead, the Retrovirus replication would be done by the HIV/AIDS lab since both HIV/AIDS and XMRV are both RETROVIRUSES. There is no proof what so ever that William Reeves has been affected in any way by the discovery of the XMRV-CFIDS connection. As far as we all know, REEVES is still at the CDC and still doing his work (damage) there. There is NOT proof that Reeves was demoted, fired or retired.

    Remember, because of the CAA, he has Whistle Blower protection from turning his old boss in to Congress and protecting his own hide from being fired. So, the CDC may be too frightened to fire or demote Reeves due to this Whistle Blower status. I STRONGLY SUGGEST that we all continue to beat on the CDC, DHHS, GAO, and Congress to investigate and prosecute William Reeves and his associates, those that came before him, and his contractors, the thieving ABT Associates and Emory University MIND-BODY PROGRAM. Until we know for sure where and what has happened to Dr. William Reeves of the CDC, we must continue to scream and yell for his removal and for more funding for other agencies and private institutions like the Whittemore-Peterson Institute.

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  13. NOW THIS FAR MORE WORRIES ME ABOUT THE XMRV CDC REPLICATION. DOES ANYONE KNOW THE ANSWER TO JUSTIN'S VERY ASTUTE QUESTION?????


    Justin said...
    I am not a scientist and what I know about the history is from Osler's Web, so please elucidate for me:
    When CDC attempted the replication of Dr. DeFreitas' retrovirus finding, it was done by Tom Folks, then chief of CDC's retrovirology branch (devoted to studying HTLV 1 & 2, but not HIV). As told in Osler's Web, he and his assistant did not follow DeFreitas' protocol to the letter for finding gene sequences by PCR (specifically they used replinase not taq-polymerase and had the specificity so dialed up they lost sensitivity and they repeatedly froze and thawed each sample according to DeFreitas). They refused DeFreitas' invitation to come to her lab and do the experiments along side her so she could correct their technique and primers.
    They published their negative findings.
    They used the samples provided, but apparently were able to sabotage DeFreitas' results and her career by having an attitude that DeFreitas' results were bogus and then doing the experiments sloppily because they were thinking "it's bogus, so why go through all the hoops she's trying to make us jump through if it's going to be a failure to confirm her findings anyway?" This bias was apparently adopted by Folks and his assistant as not knowing much about ME (CFS) themselves, they were influenced by the attitude in general at CDC and specifically of Stephen Straus and Anthony Fauci at NIH that ME sufferers were just a bunch of neurotic middle age women with no physical pathology.
    The lab tools have improved much since then. Is the improvement such that they will not be able to easily "jury rig" their method to get negative results? Please enlighten me.

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  14. Justin: I am going to go and ask Hillary Johnson if this is correct. If anyone would know, Hillary Johnson would know the history.
    Let's pray the same CDC losers are NOT doing the WPI Replication.

    Also, I am not too pleased that WPI released that statement that the DeFreitas study is NOT the same virus as the XMRV virus. We need to see more proof of this statement. I am NOT attacking WPI, just more proof. Note also that I have given them money - and not a little money, so my money is indeed where my mouth is right now.

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  15. Go read Hillary Johnson's website www.oslersweb.com and her newest BLOG on the CFIDS Association of America. She is NONE TO PLEASED with them and many of us are also very unhappy with their lack of any real movement and the VERY HIGH salaries they are getting for doing not much of anything. Hillary, as usual, is dead-on correct.

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  16. Link to original information:
    HHS Coordinating Xenotropic Murine Leukemia Virus-Related Virus (XMRV) Scientific Activities

    http://www.cfids.org/cfidslink/2009/120203.asp

    Helle

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  17. Again - who writes this interesting blog ? Helle

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  18. Maybe Elaine DeFreitas discovered another retrovirus that is still out there to be found again ? Helle

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  19. um. Can you tell me where the above information (the blog article)was harvested? Just looking for verification of this annoucement.

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  20. @Helle-
    Dr. Timothy Luckett- check out his profile on the right side of the page.

    Yes, DeFreitas found another retrovirus, so it looks like 2 novel retroviruses in ME (CFS)!!
    so spread this news and get everyone to write to congress, hhs, nih that replication studies of her work must be funded extramurally ASAP!!

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  21. "CDC CFS VIROLOGY STUDY FINDS NO LINK TO XMRV, STRONG LINK TO CHILDHOOD BEDWETTING"
    This will be the headline in NY TIMES if we don't act on below info:
    IMPORTANT ADDENDUM TO THE BLOG POST INFO:
    - In 'phase 2' the working group will also look for xmrv in "other CFS populations". We know what that means- overweight, depressed women in Wichita who do not have ME, but are included in the Wichita Cohort per the ultimate POS Reeves CFS definition will skew results toward non-retroviral bed-wetting!!
    - (the working group will be lead by an unidentified person from NIH’s National Heart, Lung and Blood Institute (NHLBI))
    - So, we need to bombard decision makers- congress, HHS, NIH with demands that a CANADIAN ME definition cohort be used NOT Reeves definition Wichita and Georgia cohorts.

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  22. And where did Dr. Luckett receive this information about the XMRV move to the HIV/AIDS department?

    sorry, I do trust, but I verify before announcing anything to my family.

    thanks!

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  23. I do see that teh XMRV 'testing' will be done by the HIV/AIDS team for the intra-agency group, but I don't understand why that implies Dr. Reeves is no longer 'responsible' for it, and that it has completely out of Dr. Reeves range.

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  24. why are you so sure there has been 'A forceful demotion"?

    I cannot find any evidence of this anywhere.

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  25. If you go back and look at the labs that disproved the Defreitas paper you would find that they were working at the national cancer institute. this time they are one of the three labs that collaborated on these findings. this is a completely different ball game.

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  26. The Chronic Fatigue Syndrome program is in the Chronic Viral Diseases branch of the CDC, which falls under the National Center for Zoonotic, Vector-Borne, and Enteric Diseases.

    The National Center for HIV/AIDS, Viral Hepatitis, STD &TB Prevention is where retroviral study is conducted. Different National Center.

    That's the sole reason for the XMRV study being removed from the Reeves shop. That's where they study retrovirus(es). It's organizational protocol.

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  27. Anonymous wrote:

    "Can you tell me where the above information (the blog article) was harvested? Just looking for verification of this annoucement."

    If you mean what is the source for the WPI announcement "XMRV is Not the retrovirus identified by De Freitas et al."

    the source is the WPI's own Facebook site.

    Go here:

    http://www.facebook.com/pages/Whittemore-Peterson-Institute/154801179671

    click on "Notes" tab, scroll right down to foot of page and click on "See more notes", then scroll down to Fact#8 or use this tiny URL:

    http://tinyurl.com/WPIFacebook8

    Fact#8 was posted by the WPI, themselves, on 25 November 09.

    If you did not mean that, the link for the CFIDS notice has already been given:

    HHS Coordinating Xenotropic Murine Leukemia Virus-Related Virus (XMRV) Scientific Activities

    http://www.cfids.org/cfidslink/2009/120203.asp

    Was it not the case that the assigning of XMRV research to the division of HIV/AIDS prevention had been announced on Day One of the CFSAC October meeting?

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  28. Thank you - I had not noticed the presentation of Dr. Lucket as the writer of this blog. Helle

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  29. "Was it not the case that the assigning of XMRV research to the division of HIV/AIDS prevention had been announced on Day One of the CFSAC October meeting?"

    Yes, that is correct. So, I too, would like to know where this "demotion" allegation is coming from. The good ole boys are still in control of the government's activities on this. Nothing indicates to me that anyone in government, except perhaps Wanda Jones at Women's Health, gives a damn about ME/CFS.

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  30. Just becuase the hiv/aids team will be replicating the findings, DOES NOT MEAN all responsibility has been 'taken away' from Dr. Reeves.

    And the "Forceful Demotion"?

    WHAT IS YOUR SOURCE. I can find No evidence this is an accurate statement.

    I think you are extrapolating and making a leap without solid evidence.

    As was stated above, it's more of an organizational protocol concerning the 'stunning move'. And the forceful demotion is pure fantasy on your part, unless you can provide evidence.

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  31. this sounds very promising! should lead to insurance covered testing in the near future...

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  33. DOES ANYONE KNOW WHERE WILLIAM REEVES IS AND WHAT HE IS DOING AT THE CDC? We must watch that Hitler - and yes, I do mean Hitler. I thought long and hard about lumping Reeves in with that evil man but...What's the difference between Reeves and all the damage he has done belibertly to millions and millions of people worldwide and those coming in behind us and Hitler? I guess Hitler might have been smarter? And NO! That was NOT meant as a compliment to Hitler (my family died in work camps in Poland) -

    William Reeves - LIKE being tagged in the same category as Hitler??? Guess you will LOVE jail too...

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  34. He's out, Reeves is out, removed from CFS group at CDC!

    Breaking news:

    www.facebook.com/CFIDSAssn

    Simon Wessely, your days are numbered!

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  35. I think that the pressure on CDC related to Reeves should be unrelenting so this move isn't a cover up of the larger management issues.

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