Standing Up to Coyne and Against Unfair Treatment of ME Advocates

Thoughts About M.E.

By Edward Burmeister

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…

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By brendahankins Posted in Tips

Has the “Coyne of the Realm” been devalued?

Thoughts About M.E.

A recent addition to the ME advocacy community, Dr. James Coyne, has been celebrated as a savior of ME patients almost immediately since he joined the conversation just a few months ago by attacking the PACE trial. He has been a very welcome ally. So, it was rather bizarre when Coyne gave the ME community an aggressive ultimatum yesterday, in an apparent attempt to silence patients whom he disagrees with. In this particular case, it was my opinion regarding Walitt’s appointment as lead clinical investigator for the NIH study he took exception with. According to the ultimatum, patients can either “do something about [me]” or he “is out of here.” He posted the following about a tweet of mine addressed to NIH Director Dr. Francis Collins in two Facebook groups, “Invest in ME” and “The ME Alliance:”

He then proceeded to call me a “sick crazy lawyer,” tell another patient to “fuck off,” label…

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By brendahankins Posted in Tips