X-traordinary expenses?

From XMRV Global Action

There is a request for action going around everywhere :

From Wildaisy,

Please feel free to copy and paste this letter or any part of it to send to anyone you want. 

I sent the letter below to Kathleen Sebelius, Francis Collins, Dennis Mangan, Wanda Jones, my two US Senators from Florida and my Congressional Representative.

You can see discussion of this issue here: http://www.mecfsforums.com/index.php/topic,5276.0.html

Letter:

Myra McClure, Ph.D. has been appointed to membership on the Center for Scientific Review Special Emphasis Panel, ZRG1 CFSH80 2/22/2011-2/23/2011 meeting.

I protest this appointment for the following reasons:

1)  Dr. McClure is not a United States Citizen.  Why should a United Kingdom resident be deciding which applicants receive research grants in the United States?  In addition to questions of legality which arise from this, there are further questions of expense, since Dr. McClure's travel expenses will, of necessity, be higher than those of a United States resident.

2)  Dr. McClure has publicly stated that she has no interest in research in the area of Chronic Fatigue

     Syndrome.

    “Nothing on God’s Earth could persuade me to do more research on CFS.” 

    Source is this articlehttp://www.sciencemag.org/content/329/5987/18.summary

   

 3) Dr. McClure has publicly stated that she is biased as to study of the XMRV retrovirus, which is a  

    active area of research in the area of  Chronic Fatigue Syndrome.

"Professor McClure was a co-author of the paper published in Plos One in January 2010 titled, “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” As the paper’s name suggests, this study found no evidence of XMRV or MLV in CFS patients or controls. This study can be found here:http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0008519

                                                                                                                                                                                                                           Professor McClure has publically stated on many occasions that there is a high possibility that the XMRV/MLV related virus findings being implicated in CFS are a consequence of contamination."

Seehttp://livingwithchronicfatiguesyndrome.wordpress.com/2010/09/27/conversing-with-professor-myra-mcclure-about-xmrv-and-contamination/

  

I ask that Dr. McClure be removed from this committee and that a qualified retrovirologist who is a resident of the United States be appointed instead.

  

Cordially,

http://www.facebook.com/note.php?note_id=185904741443919&id=100001385235698

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So here is the story. There is a committee that is part of the NIH (National Institute of Health) that decides if a request for grant for a research is approved or denied. 

We have learnt that for ME/CFS, there are about 3 or 4 percent of the grants that are accepted this way. This is because the committee members that review the grant  proposals are not knowledgeable about the disease and very likely do not think it is a serious disease. For the most part, the grants accepted relate to psychology and ME/CFS. 

Recently the composition of the committee changed, and someone from the UK was invited to join, amongst the other ones, a retrovirologist who publicly said she would never research CFS again, and trying to replicate the WPI study, did not find XMRV, a novel retrovirus associated with ME/CFS either in patients with CFS or controls. She also went on a few interviews saying there is no XMRV and the WPI study is likely contamination.

Now, would you think there is a very strong conflict of interest that the committee accept a scientist that have an obvious aversion for this illness, doesn't believe in the connection with XMRV and will review grants applications?

If one was truly interested to advance science for a population of very sick people that's been neglected for 3 decades, would that be the way to go? 

Clearly Myra McClure has made up her mind about contamination. And this is Vincent Racaniello's interview, it starts at about 48:30 minutes into the broadcast. 

What patients need at this point, is open minded scientists and doctors, the kind that know what ME/CFS is all about. We need research grants to be awarded and science to prevail, not the insurance companies, not the interest of the governments. It is a travesty to think that millions of patients across the world have been ill for over decades without being able to get decent health care, or getting respect, the same kind one gets when they get cancer. We are human beings. We once had productive lives. We wish to return to a productive life. 

Myra McClure doesn't belong on a US committee that determines who gets a grant and who doesn't She is biased. She works with people (Simon Wessley) who thinks ME/CFS is not a real disease. She has very likely never met someone with ME/CFS.  

I urge the governments, the doctors and the patients to act and send e-mails and faxes to the NIH and their congressmen to remove Myra McClure from this committee.