ME/CFS Institute of Medicine Committee Selected
Letter from PANDORA Org President
Dear ME/CFS advocates and experts,
Since the first public announcement in August that the U.S. Office of Women’s Health intended to contract with the Institute of Medicine to develop a consensus on a clinical disease definition, many confusing events have occurred. I want to let you know that I have the same fears expressed by many patients and experts. I also respect everyone’s efforts regarding the IoM, including the Stop the IoM campaign. All of us want the same outcome. We all want patients to have access to quality medical care and be treated with respect and dignity. You are very valuable to me, and I want nothing but the best for all of us.

My belief is that in order to work effectively, this issue has to be worked from many different angles. So, through all the developments, I worked to find out specifics, got experienced advice, kept our board informed, weighed all the options and looked for solutions that will improve physician understanding of ME/CFS and improve patient access to knowledgeable healthcare. I also believed it was important to keep you informed of our decisions and actions along the way.

At this time, the IoM study is moving forward with the first committee meeting possibly being in January. The IoM has selected intended committee members for the study and started gathering information and research papers for the committee to consider.

Given previous IoM study reports on Gulf War illnesses, we understand there's a possibility that the ME/CFS IoM study results will not produce a definition for the disease that is best for patients if patient advocates and illness experts are not proactively involved in the process. But there is also the possibility that the ME/CFS definition result will be favorable, especially if patient advocates and illness experts are part of the process. This is seen in the IoM's clinical guidelines report on epilepsy. If we can get the same positive results from the IoM has happened with epilepsy, it will be a game-changer for our disease.

The different results in IoM's study on epilepsy and studies on Gulf War illnesses show the chances of a better definition for ME/CFS will only happen if the patient perspective is considered, the best research is included, ME/CFS expert experience is considered, and ME/CFS experts and open-minded medical profesionals are on the committee. So, we are going to stay in front of the IoM and make sure they get it right.

Toward that goal, about 17 people have decided to work together to coordinate efforts at influencing the IoM. Some are independent advocates, and some are part of other patient organizations. Some have participated in the "Stop the IoM contract" advocacy, while others have not. What we all recognize is that the stakes are too high for us to ignore that the IoM is moving forward on what will surely have a huge impact on patients.

This initiative is called "Get it Right." Because the IoM study will be 18 months, we expect this collaboration of experts and advocates to continue during that whole time. The group is networking and assisting in each other's efforts to not duplicate work or miss important opportunities. The individual or organization that takes the lead on a certain project has control of that project; so consensus is not required. We simply are sharing our talents and the workload.

The first task is to find out information about the selected committee members to the community can give informed comments to the IoM about these individuals before they are finally appointed. We are glad to see that five of the intended committee members are ones we nominated. Keep an eye out for an Occupy CFS report on information about the selected committee members after they are researched.

If you would like to join myself and the other patient advocates in a way that is proactive, spreads the work load and avoids duplication — whether you are a patient, part of another organization or an ME/CFS expert — please let me know by emailing me at 

Most kindly, 

President and CEO


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