Next Monday, the IOM Panel creating new diagnostic criteria for ME/CFS will hold a public meeting. This may or may not be the only public meeting for the study, and it will be webcast. As you can see, I am one of seven advocates on the agenda at the invitation of the IOM. Contrary to what some people may think, I believe it would have been wrong to decline the invitation.
I don’t know how the IOM selected the people and organizations to speak at the meeting. IOM staff would not release a list of the people invited, just the final list of seven who accepted. They may have invited others, although I haven’t heard anything about it through the grapevine.
There’s been some grumbling about it, including whether we were selected because of the positions we’ve taken on the IOM contract or because of what IOM thought we would say. Honestly, I have no idea. I received the invitation and immediately accepted. Some might think this makes me a sell-out, or that some or all of us should have declined.
In my personal opinion, that’s bogus.
I see this through the lens of my legal training. When the Supreme Court invites you to present oral argument, you don’t refuse to show up because you don’t like Justice So-and-So’s politics. Your role is to show up and present the best argument you can, whether or not you believe that you will win.
Like it or not, the IOM study is happening. None of us can predict the future: maybe the contract will be rescinded, or maybe not. But as of right now, the IOM is in the process of creating new diagnostic criteria for ME/CFS. Why on earth should I refuse an invitation to tell them what I think about that?
A fellow advocate commented to me last week that refusing this opportunity to provide input is a bit like refusing to vote and then complaining about the government. I don’t know if IOM will get it right; I can’t even assess the odds of that happening. But I do know that if we refuse to speak or if we withhold our input, then we place a very heavy burden on the ME/CFS experts on the panel to make all these arguments for us. If we refuse to speak out, then we make it easier for the panel to come up with the wrong answer. I have no delusions about whether anything we say will alter the entire course of the study. But I do know that if we say nothing at all, we are playing right into the hands of those who think we’re not “qualified” enough to be worth listening to.
I know there are people who would prefer not to deal with ME/CFS patients. There are people who think patients don’t know enough to speak on scientific or medical questions. I think it likely that there are people who would prefer for us not to show up at all. Fortunately, I have not encountered that attitude among the IOM staff members. Whether any of the panelists feel that way is anybody’s guess. But I’ve always been the kind of person who speaks her mind, even when some people wish I wouldn’t.
There are advocates missing from the list of speakers who I wish had received invitations. Fortunately, at least a few of them have three-minute slots in the last session of the day. The IOM panel needs to hear directly from these advocates, and I’m grateful that they are willing to speak – especially because of the physical and financial costs of attending the meeting in person. For me personally, I am putting my health at risk to attend in person, but I believe there is enough on the line to make it worth the sacrifice.
Anyone can submit written comments to the IOM panel, and I hope that many people will. Instructions are below. Before you dismiss this opportunity, consider this: do you believe anyone will speak for us if we refuse to speak for ourselves?
If you would like to submit written comments for the first meeting, please use the email (firstname.lastname@example.org). Please focus your comments on the following question: “What is the most important aspect or information that this committee should consider throughout the course of the study?” Written comments received by January 22, 2014 will be distributed to the committee before the meeting on January 27. After January 27, written comments should be sent to the project email address (email@example.com). All comments will be considered by the committee, but they may be distributed after the meeting is adjourned.