Subtitle: Sending the Fox to Guard the Hen House.
I sent this letter:
I will post any responses I get.
My fellow Americans,
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.
This appointment is inappropriate for the following reasons:
1 - From the NIH Scientific Center For Review: How Scientists are Selected for Study Section Service : "Fairness and objectivity are the most important criteria for a reviewer."
Dr. McClure, of UK, has demonstrated that she is neither fair nor objective when it comes to research on the neuroimmune disease "CFS", better known as ME/CFS.
She has personally denigrated the discoverers of XMRV, a novel retrovirus recently found in ME/CFS patients and she has declared she is "1000% sure there is no XMRV in UK". Other researchers have found it in abundance all over UK & Europe.
After she was criticized for poor specimen selection, poor cohort selection and poor laboratory procedures, she declared "I wash my hands of any further CFS research."
And: "Nothing on God’s Earth could persuade me to do more research on CFS."
2 - She received her 14 year old lab specimens, in the one XMRV/CFS study she did, from a UK psychiatrist who has made a career out of promoting his idea that "CFS" is a mental disorder. Using pretzel-logic, he distorts every biomedical finding in this area of research into an "illness belief".
3 - She has since toured the world in a speaking campaign promoting the unsupported contention that all CFS reseach into XMRV, and the related MLVs that Drs. Alter & Lo of NIH/FDA and Dr. Komaroff of Harvard found in CFS patients, (concluding that their work supports the findings of the original work at WPI) - that all this work is merely "lab contamination". The WPI researchers are former NCI researchers with decades of experience inand and are therefore knowledgable about lab contamination possibilities, so it is clear that this in nothing more than a "marketing" approach to squelch more research into the viral and retroviral cause(s) of ME/CFS.
I contend that it is the mission of Dr. McClure to see to it that there is no more research into the viral/retroviral cause(s) of ME/CFS. More specifically, she will vote against funding any research by WPI and anyone else who wishes to research viral causes in CFS, unless they have her agenda - to disprove viral involvement.
The Department of Works and Pensions in UK (equivalent to the SSA in the US) is under the influence of the giant disability insurance company, Unum (also called ), the biggest seller of disability insurance in the US and the UK. This insurance company has a history of malfeasance in the denial of insureds' disability claims. Since about 2007, it has been advising DWP in UK on how to deny disability claims most effectively. It has targeted such diseases as ME/CFS, , and MCS for claims denial. It has a "five year plan", ending in 2012, to "re-educate" those doctors who find in favor of the disabled, in UK.To that end, NHS has suspended or harassed doctors who treat ME/CFS biomedically. There, the National Health Services deny patients with CFS any biomedical testing or treatments, in favor of counceling and drugs for "mental health".
In the US, Unum has an ongoing campaign to harass doctors who see and treat CFS patients so that doctors will drop those patients. See the judge's comments in this 2008 case of a CFS patient denied and harassed by Unum: http://scholar.google.com/scholar_case?case=3736254457285322723&hl=en&as_sdt=2&as_vis=1&oi=scholar
The psychiatrist Dr. McClure got her "CFS" specimens from is deeply involved with the Unum effort and she has been unduly influenced by him. Together, they have their minds made up not to ever acknowledge the biomedical basis of ME/CFS and to deny funding of any research that would move the science forward.
Again, I say, Dr. McClure is incapable of being either fair or objective when it comes to voting on ME/CFS research.
I would also like to say, as an aside, that there are too many psychologists and dentists on this panel, as well. It appears to be stacked against funding any research that is actually relevant to the biomedical disease processes in ME/CFS. This idea is born out by the history of NOT funding the many biomedical studies that have passed through this panel's process and have NOT been funded. It's past time that that attitude is changed. Appointing professionals with better qualifications in virology, retrovirology and neuroimmune diseases would a step in the right direction. There are many American scientists who would be a better choice.
Response from Sebelius:
Thank you for your email
While we will respond to the specific issues you raise as soon as we can, I wanted to let you know that your message has been received and that I appreciate your taking the time to write.
The mission of the(HHS) is to protect the nation’s health and provide essential human services, and, as part of that mission, we are at the forefront of the federal government’s efforts to address a wide range of critical issues and challenges. I wanted to take this opportunity to update you on our work.
First, on March 23, after more than a year of extensive debate, the President signed into law health reform legislation that brings down health care costs for American families and small businesses, expands coverage to millions of Americans and ends the worst practices of insurance companies. As a result of the new law, Americans will begin to see significant benefits take effect this year, with other important reforms following shortly after. In the weeks, months, and years ahead, our department will be responsible for implementing many of these reforms. You can be assured that we are firmly committed to explaining these changes to the American people clearly, and to enacting them carefully and effectively. For information about the new law, I would encourage you to visit www.healthcare.gov.
Meanwhile, thanks to the www.hhs.gov/recovery., we’ve made hundreds of millions of dollars available as part of a comprehensive prevention and wellness initiative, Communities Putting Prevention to Work. This new initiative supports local efforts to reduce obesity, increase physical activity, improve nutrition, and decrease smoking – the four most important things we can to do to fight chronic diseases and improve public health. And it’s right in line with the First Lady’s “Let’s Move” campaign, which calls on Americans to work together to solve in a generation. You can learn more about these and other Recovery Act initiatives at
In addition, it is a core responsibility of HHS, through the Food and Drug Administration (FDA), to ensure the food we eat is safe. Toward that end, I am firmly committed to working with my colleagues at the food safety system; restoring trust in the FDA as the leading science-based regulatory agency in the world; and fulfilling our obligation to the American people to ensure that the food they purchase and serve to their families is safe to eat. For more information, please visit www.foodsafety.gov.to achieve the President’s goal of upgrading and strengthening our
Finally, HHS plays a vital role in getting our children ready to learn and thrive in school, helping low-income working families struggling to make ends meet in this difficult economy, and meeting the basic needs of vulnerable populations, such as abused and neglected children, refugees, and individuals with disabilities. As the Administration works to turn around our economy, we recognize that the economic downturn has had its greatest impact on the most vulnerable among us – low-income families with children. Through child care, child support, energy assistance, and other efforts, the Department helps low-income parents and their communities weather this economic storm. We will continue to work hard to improve these programs through evidence-based approaches that make a difference for these families and children.
Again, thank you for writing. [END]
Perhaps we need to begin each communication with HHS/NIH, et al, with the statement that we are among the "vulnerable populations" of "individuals with disabilities", since it Ms. Sebelius's statement that they are "working hard" to improve those programs through "evidence-based" approaches.