The first IOM meeting to develop diagnostic criteria for “ME/CFS” is scheduled for the 27th and 28th of this month. The afternoon of the first day is open to the public and will include a public-comment period.
So, what’s the problem with this? The statement of work requires merely one out of the five IOM committee meetings to be public. Given how HHS and the IOM have (mis-)handled matters so far and given the tremendous backlash from the expert and patient communities, I would venture a guess that this will be the only meeting that will be open to the public. And yet, here we are, less than three weeks away from the meeting, and no instructions on the registration process have been given and more importantly, no information is available on the public-comment session. But hey, this is only the most important issue for this patient population in our lifetime. So, maybe we shouldn’t be so sensitive to all the secrecy and lack of consideration. I keep raising the fact that the secrecy surrounding this “study” raises red flags left and right and the IOM (in addition to HHS) is making my point for me. But who says that acting this unreasonably and expecting severely ill people to travel at a moment’s notice without any regard for their disability is proof of bad faith? Actually, I do!
How many people will get to comment? How will the IOM determine who will get to speak if there are more people interested in speaking than available speaking slots? Something tells me that members of the public who have been the most vocal against the IOM “study” and the entire process will get to make a public comment at the meeting when hell freezes over, despite the fact that we have been as closely involved in the IOM discourse as one can be since the very beginning. I can pretty much predict at least some people who will get a public-comment slot and I am sure you can, too, without me having to spell it out.
By the way, I do not encourage commenting substantively, e.g., on potential biases of committee members, or engaging in the IOM process in any way other than to reject it unequivocally and to make that point every step of the way. The message needs to be that the community objects to the “study” altogether for the various reasons I listed in my recent blog post.
Maybe HHS and the IOM are not familiar with this (After all, the IOM just got $1 million from HHS to burn on a literature review.), but this is how air travel works: The later you book your ticket, the more expensive it will be. This kind of matters for a patient population that is rather poor, often because of wrongly denied disability claims, ironically due to inadequate government-sponsored disease definitions. Full circle.
Update: I have heard from several patients that only organizations are being invited by the IOM to send representatives to give public comments. If this is true (and it would explain the absence of a sign-up process for comments or even attendance), this really isn’t a “public” comment session. It’s a session for people to speak who HHS and the IOM seem to think want a seat at the table so badly that they’ll play ball. Although they may be in for a surprise with some of those folks. I have to say, for an organization allegedly as esteemed as the IOM, there certainly seems to be a strong desire to control the process entirely down to what is being said at the public meeting and a lot of fear of letting people give their honest opinion. And if that’s the case, we can all imagine why.
Again, this has already been going on and yet, us mortals have not heard about this officially. This information just happened to be leaked. Why is the IOM not forthcoming about the process? From an institution with supposedly impeccable reputation, one would expect more integrity than has been evident so far.
Updated Update: More information leaked and it appears that at least two individuals who have no official affiliation with any organization have been invited to speak. It’s getting more and more disturbing. It’s like elections in East Germany where the Communist Party would always win by a landslide … of 99.9%.