Pandora posted on their site: IOM Contract Cannot Be Stopped! There is a misunderstanding with regards to item 1.) within Pandora's statement: A contract can be stopped under the following conditions: 1. Filing a lawsuit for Injunctive Relief 2. Presidential intervention or intervention from the White House Staff 3. Government Procurement in Times of Fiscal Uncertainty, the government may terminate or end a contract at any time whether it is for the convenience of the government. See: https://tinyurl.com/l3oubfs Remember: Congress does not have power over administrative decisions within the Executive Branch other than the threat to cut off funding for these agencies. Caveat this is Pandora's versions of events which have not been verified. About the IOM Procedures and Policies We were given a packet of general information about the IOM and their processes. We were also given some details of the ME/CFS contract. Now that our board has been informed, we are sharing with the public what wewere told about the IOM contract: 1.) The contract has been signed, funded and money is already being spent on the work. The legally binding contract cannot be stopped. 2.) At the time we were there, the study director had not been hired, but junior staff had been assigned and had already been doing research and a director was expected to be hired within days. We do not know nor have we inquired if the study director has been hired since then. 3.) The cost of the study is around $1 million. The information of who funded the study is public, but we did not inquire as to where we could find that information. 4.) The agency or agencies paying for the study is kept at “arm’s length” and not involved in the study except receiving reports that announce only the basics, such as when a meeting occurred and when the next meeting is. 5.) The ME/CFS definition committee is a consensus committee. This means that they will examine all the relevant studies, listen to public presentations and try to come up with a 100% consensus. If a committee member cannot agree with the majority, then in the report, they can write a dissenting opinion, but all work hard to come to agreement as this is most helpful in giving direction to the agency paying for the study. 6.) There are five meetings planned, two public and three private. The first will be private and more of an organizational meeting. 7.) At this point, the second meeting is planned to be open to the public, where the public, patients, patient organizations and medical professionals, including ME/CFS experts, can make a case of their position or research findings on the issues to be decided by the committee. 8.) Another public meeting, for public input, is planned, but when that will be is not yet determined. The other two meetings will be private for a free flow of discussion ,freedom to express opinions and freedom to change their mind. While the order may change, forsure, two meetings will be public and three will be private. 9.) All drafts of the report are confidential until the end of the process, and committee members are not allowed to discuss the nature of committee meeting discussions until after the report is finished. 10.) The report will go through an independent external review process. 11.) The whole process is expected to take 18 months with the last meeting addressing how to best disseminate the consensus definition to the medical professional community. Here is what we learned about the standards and process for selecting committee members: 1.) Committee members are not paid for their work on an IOM committee. Their lodging, travel and meals while at the meeting are paid for. This lack of reimbursement for time often leads to private practice clinicians declining to serve, meaning professors, researchers and others with income not tied to their -time make up most of their committees. 2.) The IOM looks for individuals to serve who do not have a strong bias and do not have a financial conflict of interest (ex. their income is largely dependent on the agency funding the study). This is because they want the evidence (research studies and facts presented at the public meetings) and reasoning to be the basis for their conclusions. 3.) They look to many sources for nominations. First they contact their own members, as the IOM is a nonprofit organization of many medical professionals. They may ask their own member to serve or ask that person to nominate someone. They also ask for and welcome outside organizations to make nominations. 4.) They will post on their website the intended committee members for the public to comment on whether they have a bias or conflict of interest. 5.) Committee members understand and agree to serve representing themselves and their expert opinions, not the policy or interests of an organization, agency or institute they work for. Finding Out the Options and Learning from History. Also while in Washington D.C., we sought the advice of a Gulf War illness advocate on these matters. His advice matched what we were told by another long-time and very involved Gulf War illness advocate who has seen the IOM do ten studies on that illness. That advice is: You can’t stop the contract, but make sure you have the right kind of experts on the committee. Don’t wait and try to fix it afterward! These advocates tell us that they did not realize who was on the current Gulf War illness committee until after the members were appointed. They also tell us they gave a presentation in the April committee meeting saying there needed to be more neurologists, endocrinologists, immunologists and clinicians who specialize in the disease on the committee. Since then, the IOM added another neurologist to the committee. Also, no conclusions have been formed and no report has been released. The committee is still doing the study. These Gulf War illness advocates also tell us that from the beginning, they were against an IOM study on Gulf War illness treatments because it was a waste of money because patients know there aren’t any effective treatments. And they were not happy with the report. These advocates also told us that of the nine studies the IOM has completed on Gulf War illness, one came out very good in the view of the patients. This was the 2010 report on health effects from serving in the Gulf War. For the studies they don’t like, these advocates tell us much of the problem was the way the VA wrote the contract. They put much of the blame on the VA.