Some people have suggested that experts boycott the committee. But that seems to me to be definitely in conflict with the interests of patients. If the panel is going forward, and it seems like it is, then we want the true experts on it! If they all boycott, we only guarantee that the panel will be populated with non-experts, many of whom will not act in our best interests, even if only because they don't understand them.
The Gulf War Veteran's group had a powerful advocacy group, the Research Advisory Committe and a Congressional Mandate, yet with all that support and advocacy, the majority of members on the IOM panel were chosen with the psycho/social predisposition.
RESULTS:
The committees's work led to a 450-page 2008 report that showed Gulf War illness is a physical condition, rather than one caused by stress or psychiatric illnesses. The report also showed that the symptoms are related to toxins, such as sarin, anti-nerve-agent pills and insect repellents, that the troops were exposed to during the war.
IGNORED BY THE PANEL
Steele agreed that VA excluded data from the research, and that it was "akin to medical malpractice." IOM committee was allowed only to select literature that was based on psychological research.
The IOM research included veterans from the past 20 years, rather than just Gulf War veterans, and "lumped" their symptoms together, according to Steele.
A 2012 report by the group also said that VA staff was working to reverse those findings. For example,
a survey VA sent out to Gulf War veterans focused on psychiatric issues, rather than physical exposures.
VA officials purposely hide or manipulate data to avoid paying costly benefits claims to Gulf War veterans.
"Congress . . . created the (committee) precisely to provide this kind of independent advice, because of the demonstrated inability of VA and DoD (Department of Defense) staff to face this problem honestly and conduct an effective research program to solve it."
"If the studies produce results that do not support the office of public health's unwritten policy, they do not release them," said Steven Coughlin, a former epidemiologist in the VA's public health department
Rep. Mike Coffman, R-Colo., and a Marine who served during 1991 war, called VA's handling of Gulf War illness "embarrassing." He asked the VA why they changed Congress's charge to ask the IOM to do research on treatments, to which she said VA let the experts decide what should be looked at. He also asked why VA had spent money meant for Gulf War vets on other programs, but Davey said she was not prepared to respond to that question.
"Congress . . . created the (committee) precisely to provide this kind of independent advice, because of the demonstrated inability of VA and DoD (Department of Defense) staff to face this problem honestly and conduct an effective research program to solve it."
"If you had anyone on your panel who was a Gulf war vet, I don't think we'd be here today," Coffman said.
Lea Steele, a researcher at the Veterans Health Research Program at Baylor University, backed Coughlin's claims, saying, "In some sectors within VA, there appears to be backward movement."
Steele also charged that VA has used money meant for Gulf War illness to fund other programs.
Coughlin said a 2012 panel of outside experts hired to help the Institute of Medicine study neurological connections to Gulf War illness was stacked in favor of those who believed the disease is psychological.
There was no one to present the opposing side — that it's neurological," Coughlin said. "Science is self-correcting, but if people don't publish data that doesn't support an opposing hypothesis, then it's a huge problem."
The panel said they found no one cause to what they called "chronic multisymptom illness," and that there was no one treatment for all of those veterans.
After the 1991 Gulf War, a series of research reports raised concerns that the veterans' children were more likely to be born with defects, and that veterans' spouses were also becoming ill. Congress mandated that the VA maintain a registry of Gulf War veterans' family members.
The data has never been released, and Coughlin said he has "been advised that these results have been permanently lost."
DOD lost all records on the type of vaccinations given before deployment
Rand corporation refuses to release information on vaccine data
Coughlin, who was a senior cancer epidemiologist at the Centers for Disease Control and Prevention and the director of the public health ethics program at Tulane University, said continuing to work for the VA was "against my conscience."
The bottom line is that the VA acted in the same manner with Gulf War Veterans as the NIH & the CDC has acted with the ME/CFS patient community.
The Fact that all of the ME/CFS researchers/experts except one who are on the front lines and in the trenches everyday for the last 30 years oppose this contract, is a clear indication the IOM should be boycotted until proper safeguards and transparency is put in place and we have approval from all of the ME/CFS researchers/clinicians.
To date, this have been behind the scenes manuvering and coverup by the HHS and CAA.
We already have a panel of experts that openly express their support for the CCC criteria. It is ludicrous to believe that a panel of non-experts who have openly opposed throughout the 30 year history of this illness a biological/organic aetiology, will now suddenly come up with definition criteria that is not predisposed to psychiatric disorders.
The IOM Panels are nothing but Death Panels.
Death to Research.
Death to Treatment and
eventually Death to the Patient. These
IOM Death Panels have already left their mark on the Gulf War Veterans with 18 to 22 suicides a day for lack of treatment and on us with the loss of so maney including Tom Hennessy.
These
IOM DEATH PANELS mentioned by Sarah Palin are part of the Obamacare to cut costs in medical care and disability payments to placate the medical, health and disability insurance industry at the expense of euthanizing patients by limiting access to proper medication and treatment programs. The Grass Roots Patient Community should not stand to be treated as second class citizens.