Patients and experts have very good reason to be distrustful of the HHS entering into a contract with the IOM. The IOM is the same group that produced the guide called Gulf War and Health: Treatment for Chronic Multisymptom Illness. This is the same guide that has been the subject of congressional hearings and numerous complaints from veteran groups.
As it happens, this guide also contains a section on chronic fatigue syndrome (because some veterans with GWS also suffer from this). I traced the sources in the guide's bibliography for CFS treatment options. Much of it is not evidence based. For example, they recommend graded exercise, and to support this, they reference three web pages that cite no research.The IOM also references two journal articles. Neither of them study whether exercise helps people with CFS, and one doesn't even mention CFS.
I was not surprised that the IOM did such a bad job. It is typical of how government efforts have treated ME/CFS patients for decades. For example, for years patients complained that the CDC is misrepresenting ME/CFS on their website, only to be ignored. But recently the Chronic Fatigue Advisory Committee (CFSAC) reviewed the website. They said that parts of information were cherry-picked and presented bias as fact. You can see these statements and others beginning on page 16 of the minutes at this link on the HHS website (and that was only part of the first report of an ongoing review).
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac_min-11092011.pdf.
But I am not bringing the CDC into this as an extra topic. The IOM referenced the CDC website in their treatment section for ME/CFS. This includes the doctor toolkit that the CFSAC said should be completely removed from the site. You can see the recommendation here:
http://www.hhs.gov/advcomcfs/recommendations/06132012.html
There are major flaws in IOM process and quality control, but they decline to correct them. For example, their quality review board cannot compel the panel to correct mistakes or oversights. It can only suggest they do. The IOM justification is to preserve panel independence. The word "independence" sounds nice, but the result is no real quality control. And so if the panel decides to use biased web pages instead of science-based evidence, the IOM review board cannot stop this. Also, there is no opportunity for patients or outside experts to review the proposed final draft to catch mistakes there. The IOM defends this by saying their policy prevents interference. But the result their method is clear. The lack of real checks and balances allowed low-quality work to be published as an authoritative resource, and it is now guiding the care of seriously ill patients.
Considering the gross incompetence the IOM demonstrated in the past, and its complete lack of experience with criteria development, HHS should not have entered into any contract with them. And they could cancel the contract now if they chose to, because government contracts provide for this. But they refuse to do this.
So patients have every right to be very concerned. Not just with this, but about many other things regarding this contract.