In spite of having a government that is "by the people, of the people, and for the people" it is clear that the institutional commitments of government agencies are to themselves, rather than to citizens - which is why we have citizens' groups. This is the way it should be. Institutions are given a great deal of power over individuals, and the only way to limit that power is through the watchdog activities of citizens, and through our own insistence on following not just the letter, but the intent of the law.
Mr. Hardie made it clear in his testimony that the manipulation of the IOM report to re-interpret GWI as a psychological ailment should be considered a breach of the law. Among others, he recommended the following actions:
- A provision making it a crime punishable by federal imprisonment for a government employee or contractor to attempt to manipulate an IOM report ordered by a government agency, or for an IOM employee or member to conspire with a government employee or contractor for the purpose of manipulating a report.
- A provision directing VA to immediately terminate the IOM case definition contract [italics added]and contract instead with the DoD Congressionally Directed Medical Research Programs (CDMRP) Gulf War Illness program to develop a case definition that is linked to Gulf War service and excludes mental conditions, and that follows customary case definition practices (including assembling a committee of experts in the illness, who can consult original data sources).
While those of us with ME/CFS are not the responsibility of any institution - unlike veterans, who are supposedly represented by the VA - there is no reason why people with ME/CFS can't make the same demand of the HHS. It is a branch of government that we not only pay for, but which is entrusted with our welfare.
