Standing Up To Coyne And Against Unfair Treatment Of ME Advocates

Jeannette Burmeister

Photo of Jeannette Burmeister.


By Edward Burmeister on the Thoughts About ME Blog.


I am taking the liberty of posting this entry on Jeannette’s blog.

Many of you know that I seldom become involved in ME advocacy. My wife, Jeannette, is typically capable of holding her own. She has been, health permitting, a relentless advocate for ME for several years and has been effective in holding government agencies and officials accountable when their actions or inaction have damaged the ME patient community, and in particular when they have not lived up to their legal responsibilities. It is true that she has strong opinions on how to conduct effective advocacy and states her position assertively, but I can assure you that she makes it a priority to focus on the issues and to stay away from personal ad hominem attacks on other individuals advocating for ME.

On the rare occasion when she has made a mistake, she was quick to apologize and set the record straight. Far from being self-promoting, Jeannette has gone out of her way to support and give credit to other patient advocates for their efforts. When her health allows, Jeannette collaborates with other advocates, typically behind the scenes. Among other things, Jeannette’s advocacy efforts seem to have derailed the massive price increase for Ampligen that was scheduled for next month, which according to the Ampligen study coordinator is now not going into effect for the time being.


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