Ousting Dr. Myra McClure from the
NIH Committee to Approve ME/CFS Grants
Here is an excellent protest letter written by ME/CFS patient Patricia Carter on the occasion of the appointment of Dr. Myra McClure to the Center for Scientific Review Special Emphasis Panel, which approves National Institutes of Health grants for ME/CFS. Carter has granted permission for patients to copy and paste the letter or any part of it and send to anyone who can make a difference.
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 article.
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 article.
3) Dr. McClure has publicly stated that she is biased as to the study of the XMRV retrovirus, which is an 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.
Professor McClure has publicly 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.
Source is this article.
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.
Here is the list of email addresses kindly provided by Leela Play.
kathleen.sebelius@hhs.gov
francis.collins@nih.gov
dennis.mangan@nih.gov
toni.scarpa@nih.gov
hoshawb@csr.nih.gov
http://www.whitehouse.gov/contact/
President Obama's Science Advisor, John Holdren, at AskDrH@ostp.gov
kathleen.sebelius@hhs.gov
francis.collins@nih.gov
dennis.mangan@nih.gov
toni.scarpa@nih.gov
hoshawb@csr.nih.gov
http://www.whitehouse.gov/contact/
President Obama's Science Advisor, John Holdren, at AskDrH@ostp.gov
Find your congressperson here.
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Thanks Mindy. Thanks Patricia.
ReplyDeleteThe Scientific Review Officer (SRO) in charge of this Special Emphasis Panel (SEP) meeting is Brian Hoshaw, Ph.D.
ReplyDelete“Dr. Hoshaw received his Ph.D. in experimental PSYCHOLOGY from Temple University. He then worked as a postdoctoral fellow and research associate in the PSYCHIATRY Department at the University of Pennsylvania.” http://www.csr.nih.gov/photodisplay/finalroster.aspx?f=Brian&l=Hoshaw&e=hoshawb&srg=CFSH
Counting Dr. Hanshaw, there are TWENTY committee members, and NINE of them have qualifications in either psychiatry/psychology or dentistry.
Psychiatry/Psychology: Hanshaw, Davis, Friedberg (good guy), Hollins, Meagher
Dentists: Greenspan, Leresche, Plesh, Schiffman
I am on it. As a Canadian I am invested in the U.S approach to ME/CFS too. What happens in your country effects me and others internationally. The thing I find incomprehensible about assigning Myra McClure to the NIH commitee is her definative public statements against the presence of XMRV in ME/CFS. Her sneering attitude toward science that contradicted her own at XMRV related meetings was not lost on me either. Why would the government assign her to the committee when her bias is so evident? I worry her very public views about XMRV will interfere with any grant proposals for XMRV related research.
ReplyDeleteIt is so disheartening to know that XMRV science has made so little headway compared to surrounding politics. Let's not get down though, let's fight back across borders!
I just read the commitee bio above. The U.S. government supports psychological approaches to ME it looks like. Sadly, I think ME patients were being 'handled' by polticians for the past few months. Actions speak louder than words, and the NIH grant panel that includes McClure speaks volumes.
ReplyDeleteI sent Ms. Carter's excellent letter and have added the below to it. Please use this text if you wish!
ReplyDelete'Prof. McClure has claimed her studies prove facts which were not shown in the science when commenting to the press to disparage WPI.
She is also a collaborator of well-known anti- ME science charlatan Simon Wessely:
BBC on-line:
http://news.bbc.co.uk/2/hi/health/8441491.stm
Professor Myra McClure, one of the Imperial College London investigators, said: "We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK."
She said they had used extremely sensitive DNA testing methods, called polymerase chain reaction, to look for the virus.
"If it had been there, we would have found it."
'Disappointing'
Co-author Professor Simon Wessely said the findings did not invalidate all previous research, some of which has shown that CFS can be triggered by other infectious agents, such as Epstein Barr Virus.
Independent Newspaper:
http://www.independent.co.uk/news/science/scientists-claim-to-have-found-the-cause-of-me-is-premature-1859003.html
One scientist involved in the latest research also criticised the previous study, which was published in the peer-reviewed journal Science, saying it was premature and that the journal should have waited until there was stronger, corroborating evidence of such a link."When you've got such a stunning result you want to be absolutely clear that you are 1,000 per cent right and there are things in that [previous study] I would not have done. I would have waited. I would have stalled a little," said Professor Myra McClure'
sent. thank you for sharing the text of the protest letter. my mind is too tired to compose such a letter myself. we should also be protesting Dr. Stoye (from the UK) moderating the various XMRV conferences.
ReplyDeleteThanks Mindy for following up on this important Manner. First, This is BOTH a slap in the face and a stab in the back to ALL patients in America who suffer from M.E. and CFS or FMS. Dr. Harvey J. Alter, the single highest official at the NIH in charge of blood transfusions, who has also discovered the Hep. C virus in the US blood supply, and won the Lasker prize for his work, the most prestigious Medical prize in America, stated last month at the FDA meetings that "the association of XMRV in CFS is quite strong". He also said, that even if future tests show that "XMRV is NOT the cause of M.E. or CFS, that these patients are quite ill, and we need to invest the funds to find out what is the cause". Along with Dr. Hansen, Dr. Shyh Ching Lo, and Dr. Judy Mikovits, Dr. Alter said that"XMRV is being found quite consistently by labs with the proper primers and assays". And with a population of 310 million people, America doesn't NEED to import, snarky and incompetent shrews who have been UNABLE to find XMRV in samples in the UK. And that the WPI staff did find samples positive for XMRV in the UK. Out of 19 people on this panel, only 3 have shown any propensity and/or knowledge of how to diagnose an M.E. patient: Dr. Jim Baraniuk, Fred Friedberg, PhD, and Dr. Maureen Hansen. I have studied more than 2,000 medical articles over 24 years on these conditions, and i have never read any work by these TMJ, AND TMD dental experts and psychologists regarding M.E. or CFS. This Brian Hoshaw is obviously incompetent and biased. But adding the shrewish McClure to the mix, he has proven to be both venal and cruel. McClure should be sent packing before she sets foot on our soil again. And Hoshaw should be removed from this position of power ASAP!
ReplyDeleteHere is the letter I sent. I used most of Patricia Carter's letter then added my own objections to McClure's saying things in the press which were unsupported by the science and also a complaint on the over-all make up of the SEP (text authored by Dr. Yes). Please, as always feel free to us the whole or any part of this letter unattributed. Letter edited so that it is ready to just cut and paste into your email text field as a complete letter. Remember to sign at the bottom.
ReplyDeleteI'm having trouble posting the letter here, so please see it on PR forums, comment 11 on p.2 of the following thread: http://forums.aboutmecfs.org/showthread.php?9873-Stars-Not-Aligned-Any-More-CFS-SEP-Panel-Reverts-McClure-on-Board/page2
Sorry for the confusion here. It looks like my post at 9:53pm (5th post down) got cut off. Also, I have improved the letter, so please check it out at the link to PR forums here, post #11, p.2 of thread (the same link also mentioned in my later post):
ReplyDeletehttp://forums.aboutmecfs.org/showthread.php?9873-Stars-Not-Aligned-Any-More-CFS-SEP-Panel-Reverts-McClure-on-Board/page2
I agree that it looks like we were handled by the NIH in the past months. Looks like we're back to square one. Veeery disappointing. One can only wonder why governments are so dead set on denying a biological cause for ME/CFS. It doesn't make sense for so many well educated people to be so narrow-minded.
ReplyDeleteJust shaking my head in dismay... thanks for keeping on top of this, Mindy.
ReplyDeleteIs there a world body for human rights to hear about the negligence and corruption generally around this disease?
ReplyDeleteThough I can barely manage one class at a time, I went back to university to work out a framework for preventative mental health reform to support my child who is facing discrimination and lack of medical and social support for neuropsychiatric illness. (An illness which may be caused in some way by XMRV.) I use what I learned in school and through almost fifteen years of advocacy in mental health care to help me make sense of ME politics. My research and experience suggests scientists and governments are human and get really caught up in supporting views they are heavily invested in like any one else. Perhaps even more so because entire careers, policy, and complicated beaurcracy are built up on their thinking, which makes it a huge task to change. (Not to mention a lot of money is at stake.) The more people are invested in something, the more they cling to it. Patients have nothing invested in the old ME paradigm, indeed our suffering is increased by it, so we are in a rush to abandon it and rightly so. We are in a fight for our lives, while others attempt to protect the status quo in support of their interests.
ReplyDeleteI think a key point patients need to identify as we move forward in advocacy is that reform rarely happens for moral, or altruistic reasons. If that were the case we wouldn't see all the suffering in the world that we do. Who could morally justify abandoning sick and vulnerable people? The neglect of men and women with severe mental disorders is shocking. Too many are abandoned by governments (sometimes even families) and left to live in the streets where they are too ill and deprived to rally for their rights. Of course, the negelct of ME patients is shocking too. I can barely cope with the burden of neglect that pervades in my family, but I do.
It is important to identify some of the structual reasons many scientists and governments cling to psycholgoical explantions for ME/CFS despite all the evidence against it. This will help develop a poltical strategy for ME reform. It will help patients choose allies who are invested in transforming science and the system, and rally systematically against those who don't.
Thanks for the forum for change Mindy. Tools like yours are an important vehichle for people to gather strength and find others who are invested in transforming medicine. They are out there and of course you are one of them.
Does ANYONE have a link to the video that McMlure gaave ina seminar in teh UK? I HAVE to find it. In it she states that teh WPI doesnt even exist, and that the photos coming form the WPI websire on the building of the center were fake. I want to include that in teh email.
ReplyDeleteIt's so inflamatory and she sounds like an idiot (more than usual).
I will try and find it, but if you all can, lets get this link in the email.
Thanks Mindy !!
ReplyDeleteDoes ANYONE have a link to the video that McMlure gaave ina seminar in teh UK? I HAVE to find it. In it she states that teh WPI doesnt even exist, and that the photos coming form the WPI websire on the building of the center were fake. I want to include that in teh email.
ReplyDeleteIt's so inflamatory and she sounds like an idiot (more than usual).
I will try and find it, but if you all can, lets get this link in the email.
sorry, i know i am spamming this comment, but it's really important. in the video, she was such an idiot about the non-existence of teh WPI.
That wasn't McClure, it was Esther Crawley.
ReplyDeleteRead "Chronic Fatigue Syndrome: A Novel" and follow the money. Cheap and easy read. http://www.amazon.com/Chronic-Fatigue-Syndrome-Bureaucracy-Belief/dp/1456334808/ref=pd_rhf_p_t_1
ReplyDeleteThanks Mindy. Patrica's letter makes an excellent template and resource for those of us wanting to craft our own.
ReplyDeleteThere are so many good people and they pick someone who has been publically critical of patients and who has a vested interest. Who has a belief that a pivotal *ongoing* area of research isn't important... Who isn't even a US citizen!
I'm surprised to see that, too. Non-Americans deciding on grant approvals. Even last year, Broderick (I believe he's Canadian), a pro-CFS fellow, was on the committee. Maybe they can have input, but they shouldn't have voting rights. The same goes for Stoye.
ReplyDeleteHere again we are at the crux of how and why we support the medical research that we actually support. The crux of the matter is, a peer review process that leads to the most rigorous and independent, though not perfect, review of scientific and clinical merit.
ReplyDeleteHere we are facing a disease with negative consequences on the lives and productivity of Americans that is getting miserable funding, if at all.
Here we have preponderant evidence on potential agents involved and causes that are superficially dismissed by a leading scientist who publicly shows no interest in investigating further.
Here we have an NIH government employee, Scientific Review Officer Brian Hoshaw, entrusted with the responsibility to look for a set of experts for a special emphasis panel to examine and approve ME/CFS Grants. What I would expect from such an Officer?. At a minimum, good scientific judgment and a sense of independence in the face of potential inappropriate influences. Particularly if there are highly disputed scientific issues. Is it possible that Dr Brian Hoshaw could not find anyone else, in the world, of the same scientific caliber than Dr Myra McClure for his ME/CFS Committee ?. What criteria does the NIH/CSR use to select for Reviewers and, in this case, for Special Emphasis Panels?.
Is there any oversight/ supervision on Scientific Review Officers job?. Are they encouraged to ask for help in discernment when there are critical issues at hand?. I am asking this because this is the second time this year in which NIH shows no judgment on Reviewer Selection. Last one was putting psychiatrist Nemeroff on a review panel.
I wonder whether Dr Hoshaw asked for advice and who and what kind of advice he received? His asking was very much expected because he is a relatively young scientist, 6 publications at Pubmed, trained in Psychiatry at Penn School of Medicine. So, he does not appear to have much experience on scientific review and/ or grant management either. On what grounds was Dr Hoshaw selected for the job at NIH?. Perhaps he got in through an internship program and, if this was the case, I hope that NIH sets up a mentoring program to monitor and help these young review officers. Because their training and performance are critical for a review process to allow the best medical research funded.
Myra McClure states she has withdrawn from the Panel !---Here is an email exchange with Marty today:
ReplyDeleteI sent the following email to Myra McClure today:
"Please withdraw from the U.S. Government's SEP (Special Emphasis Panel) for ME/CFS.
I have lost 35 years of my adult life to this disease. We have to demand researchers who recognize the disease, and we have made this clear to the other members of this panel."
Her reply:
"I already have."
BW!
Katrina
Wow!
ReplyDeleteKatrina, with results like that, may I implore you to send an email to Jim Jones, telling him to go drink some Kool Aid?
@ Erik LOL Of Course :)) but it's actually Marty who had this exchange today. And many patients did write to the NIH and SEP Committee, plus MMC!
ReplyDeleteYippee!
Katrina
You file an Rico class action lawsuit against officials of the NIH and CDC. Google it.
ReplyDelete