"In widely covered congressional hearings in 1973, pharmaceutical industry officials acknowledged they were using prisoners for testing because they were cheaper than chimpanzees." - AP story on Yahoo
"ATLANTA – Shocking as it may seem, U.S. government doctors once thought it was fine to experiment on disabled people and prison inmates. Such experiments included giving hepatitis to mental patients in Connecticut, squirting a pandemic flu virus up the noses of prisoners in Maryland, and injecting cancer cells into chronically ill people at a New York hospital." - Michael Stobbe
If you think the psychiatric industry's push to have ME/CFS categorized as "medically unexplained" and a "psychosomatic" illness has no meaning for you who have this neuroimmune disease or care about someone who has it, think again. Institutionalized mental patients are, for all intents and purposes, prisoners. They become prisoners of mental institutions without the due process of law that those who are accused of crimes are afforded under the law.
In some US states, psychologists and psychiatrists are advocating a change in laws that now require two doctors to sign legal papers authorizing the commitment "for observation" of those who might be "a danger to themselves or others". They want to be able to commit people on the signature of one doctor.
Imagine that you or your loved one goes to a physician who diagnoses the ME/CFS patient as depressed or as somatizing. Imagine the prescription for exercise, talk therapy, drugs. If the patient, knowing her own body and her own experience, refuses this "treatment", she could be committed to a mental institution to enforce "compliance", "for her own good". The death of Sophia Mirza is one of the results of this policy already in force in UK. The men in white coats came to her door, with her mother present and objecting, forced their way in and took her away against her will. It could happen in the US.
Mental hospitals do not have the capacity or the knowledge needed to treat a neuroimmune disease and the multisystem dysfunctions that result from it. To the person with a hammer, everything looks like a nail. ME/CFS patients committed to a mental institution can expect to be pounded into the perceived holes dreamed up for them by psychiatrists, psychologists and physicians who collude with them.
Once committed, patients no longer have the right to "refuse" treatment or even give consent to treatment. They can be, and are, injected with psychotropic drugs against their wishes. And if the psychiatric industry so declares it, the "treatment" for ME/CFS can be GET, CBT and antidepressant and antianxiety drugs. These drugs have generally proven unhelpful for those with ME/CFS. They can have side effects that are permanent. As for exercise as a "treatment", ME/CFS patients are already doing all they can physically, so urging them to increase physical activity is unnecessary and can be damaging.
And what if "resistant" mental illness "requires" ECT - electro-convulsive "therapy"? You thought that went out in the era of "One Flew Over the Cuckoo's Nest"? No, it comes back around in fashion every so often. It's the treatment of last resort in the minds of some psychiatrists, rather like sending the patients to a psychiatrist was in the first place, for the physician who couldn't correctly diagnose ME/CFS in the first place. For the ME/CFS patient already experiencing seizures, being convulsed by electricity as a "treatment" for a CNS that is already fragile could be the last shock it could not withstand.
Research by scientists and clinicians who actually treat biomedical ME/CFS, not the watered-down version invented by the CDC and the NHS in UK, but the Canadian Consensus definition of CFS, has shown that exercise and talk therapy are no more "treatments" for this neuroimmune disease than they would be for other diseases, such as HIV/AIDS, polio, MS, malaria or hepatitis C.
Of course, any sufferer of debilitating disease might benefit from counseling on how to cope, but coping strategies are not treatments for the disease itself. Any researcher or clinician who acquiesces to this emotional and intellectual manipulation is colluding with the school of propaganda that seeks to inculcate the disinformation that "illness beliefs", present stress from previous childhood abuse, or any other thoughts cause or sustain this disease.
If you don't apply this standard to other neuroimmune diseases, you can't apply it to ME/CFS. Period.
The race is on. Will biomedical researchers be able to prove, create and market a reliable test for the biomarkers already found for ME/CFS before the psychiatric cabal can change the involuntary commitment law and the DSM to suit themselves?
This is why it is such a big deal when the likes of Kim McCleary, Suzanne Vernon and CJ do and say things that chip away at the real biomedical research and those researchers. Delaying and sabotaging biomedical research give the psychiatric lobby, supported by the disability insurance lobby, time to get their plans into place.
For a glimpse into how disability insurers such as Unum operate, read the case of a man disabled with CFS and how many years of harassment, appeals and fighting it took for him to win. Read the judge's list of 13 illegal tactics several insurers and reinsurers regularly use to avoid paying legitimate disability claims. Mr. Merrick was a millionaire and had the means to fight and to survive the fight, unlike the vast majority of those who have already been impoverished by the disease before they try to get disability benefits.
It would shortcut the process a great deal to just have those with ME/CFS labeled as mentally ill, to prescribe GET, CBT and cheap drugs and to then put them away if they don't or can't comply.
Sophia Mirza.....it could happen here. And Kim McCleary regrets that CBT and GET are "not available treatments" in the US, no thanks to her and her cronies.
Sunday, February 27, 2011
Saturday, February 5, 2011
My Letter to the SEP: Dr McClure's Appointment Is Inappropriate
Subtitle: Sending the Fox to Guard the Hen House.
I sent this letter:
To:
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 in HIV and cancer research 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. Background information: 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 UnumProvident), 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, fibromyalgia, Gulf War Syndrome 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. Sincerely, |
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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 Department of Health and Human Services (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 American Recovery and Reinvestment Act, 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 childhood obesity in a generation. You can learn more about these and other Recovery Act initiatives at www.hhs.gov/recovery.
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 Department of Agriculture to achieve the President’s goal of upgrading and strengthening our 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.
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]
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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.
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