CFIDS Assoc America: IOM Survey

[Firestormm]

IOM: Let’s Get It Right

Posted: 10 Jan 2014 03:54 PM PST

In 2013 there were immense challenges in the ME/CFS landscape and a number of changes at the CFIDS Association. One thing that challenged us all was the Institute of Medicine contract to propose diagnostic criteria for ME/CFS. As we move into 2014, their work begins in earnest. From the beginning, and despite some vocal opposition to our position, our Association has been optimistic about the potential positive impact of the IOM committee.

The CFIDS Association of America, along with PANDORA Org and other advocates, has been invited to make a presentation to the IOM Committee on ME/CFS. They want to know what primary thing they should keep in mind as they look at the research. We want YOUR thoughts so we can best represent your concerns. Working together, we all hope to make the most of the open session on January 27th.

The Association has created a very brief survey aimed at gathering your input and experiences related to diagnosis in order to inform the IOM committee. We will use your responses to help frame our public comment on the 27th. In order to effectively do so, this survey will close on January 22nd.

PANDORA Org, created a short survey that was posted earlier this week, aimed at helping inform the group’s discussions, comments and efforts in advance of the meeting. If you haven’t already, please take a moment to fill it out. Survey ends tonight, Jan. 10 at 11:59 EST.

The development of safe and effective treatments for ME/CFS requires uniformly accepted criteria that can be used consistently by researchers, clinicians and patients. One of the several reasons for the slow progress against this illness has been the lack of uniformly-accepted clinical diagnostic criteria. The credibility and authority of the IOM is important to making ME/CFS widely recognized and diagnosed throughout our nation’s medical community. And that will help patients.

We appreciate healthy, respectful discussion on this because so much is at stake. We recognize that we each have a role to play – some focus on providing information to patients, some bring information and insights through their blogs, others focus on physician education, and some of us focus on research. None of us can do everything, but together we can become a body strong enough to defeat this illness. So as the process with the IOM moves forward, despite whatever difference of opinion we may have expressed in the past, we know it is critical to work together with other agencies and individuals to do our part to ensure the best possible outcome. We are proud to be communicating with multiple organizations and advocates to do just that – a conversation among organizations and advocates working together to impact a positive outcome.

As we look to 2014 there is hope for an even brighter future and an exciting path laid out ahead - you can read more in our year end summary.

We truly are all in this together as we work on this awful disease. We know that we can’t achieve our goal of a world without ME/CFS without an informed and connected patient population. YOU are a key ingredient to making ME/CFS understood, diagnosable and treatable and so we will continue to seek ways to effectively involve you in our work and engage your voice in the overall process.

 

[Seven7]

I cited all my successful treatment and the tests that were abnormal. I am also making an effort not to say fatigue but saying that I have inability to produce energy on demand (until we get a better words) so it is obvious to set ME apart from regular fatigue.

 

[Esther12]

The development of safe and effective treatments for ME/CFS requires uniformly accepted criteria that can be used consistently by researchers, clinicians and patients.

I do not understand the reasoning behind this, particularly as we do not currently have access to evidence which allows us to be confident that we can develop a criteria for a meaningful diagnosis.

What if the uniformly accepted criteria is less good than one of the many currently floating about? Why would that be helpful? Do we have any confidence that the IOM process will lead to a preferable criteria to all those currently available? Also, I think that having many conflicting criteria is a good way of reminding people of our current ignorance.

I'm really uncomfortable about the IOM process.

I think some patient groups are living in a fantasy land, with a deluded sense of the quality of research around ME/CFS, and a failure to understand how much harm can be done by unjustified claims of expertise.