My plan upon the announcement of the Institute of Medicine panel was to provide detailed write ups on all the members within 48 hours. Reality smacked me upside the head after about 24 hours. I am working with a wonderful team to get this done, as you will see, but many of us have had medical appointments and family situations this week, and all of us are personally affected by the severe limitations of ME/CFS in some way. The project is taking a bit longer than anticipated, but I expect that the first group of profiles on the seven “Unknowns” will be ready later today. For now, I would like to explain our methods so that you can see how we pulled all of this together.
The Team: I am lucky to be working with a great team of fellow advocates: Claudia Goodell, Chris Heppner, Lori Chapo-Kroger, Denise Lopez-Majano, Mike Munoz, Darlene Prestwich, Tamara Staples, WillowJ, and one advocate who wished to remain anonymous. I posted requests for help several weeks ago on Facebook, this blog, and at least one ME/CFS forum. All of the team volunteered, although some may have needed encouragement. Before the announcement of the panel, we formulated research questions and collected sources to guide the work. Several of us did practice dry runs of these questions and adjusted based on what we learned. I assembled a list of nominees from as many sources as possible, and that helped, but half of the panel were completely new names to us. The team was on standby for the panel announcement, and we got to work within 30 minutes of the announcement. I am deeply grateful to each volunteer for their tremendous work, and this project would not have been remotely possible without all of their involvement.
The Goals: The project has evolved as we’ve researched and discussed our findings. We now have three goals, and will address them in successive posts over the next few days:
- To provide well-researched profiles of each of the 15 panelists to help the community assess and provide feedback to IOM.
- To share our own discussions about the panelists and overarching issues. While we do not represent every viewpoint in the community, we do cover a fair part of the spectrum. We will share with you the questions and conclusions that we have discussed.
- To propose a response to IOM. We may not be able to reach consensus within our team, we’ll do our best to share a cohesive response with you. We will also provide more information about how you can submit feedback to IOM as well.
The Methods: To prepare the well-researched profiles, we have examined numerous sources. We focused on characterizing the individual’s career, involvement with the IOM, and their relevant expertise. We screened curriculum vitae, publication history, and nonprofit work. We looked for conflicts of interest and bias, and screened the unknowns for any position or familiarity with ME/CFS or overlapping conditions. We watched videos of their talks and examined their funding history. We’ve discussed what we found about the unknowns as a group, raising more questions. Finally, I collaborated with team members to draft and refine the profiles. Now you know why I am so grateful to the team for their extensive work!
What Next: The first batch of profiles will go up later today. Our goal is to post all the profiles by the end of the day tomorrow, and then move on to our assessments of the panel. Stay tuned!!