When I published my blog post last week, “The #CoyneEffect: Is the ME Community Stepping Up or Backing Down?” following my hiatus from advocacy, I did not intend for that to be my return to ME advocacy. I simply felt compelled to make use of this space to express my grave concern about the chilling effect of organizations and individuals with a sizable platform enabling Coyne’s attempted silencing of courageous dissenting voices criticizing the unconscionable neglect of, and misconduct relating to, ME by the federal health agencies. We sorely need those voices to counter potentially harmful government activities. The absence of these voices clearly weakens the community.
I also wanted to set the much-distorted Coyne record straight and to make sure that the efforts to erase the ugly Coyne chapter will not be successful and that there will be no plausible deniability when (not if) Coyne launches his next offensive against the ME community and its patients. Now, my work here is done—ironically and unexpectedly—more effectively due to Coyne’s own comments on my blog. (Though I certainly might feel that I have to respond to new developments in the Coyne matter should they be serious enough.) Educated, trained and experienced in the field of mental health, Coyne has shown himself as somebody who takes pleasure in inflicting harm on people who are very ill and, at least in my case, delighted in taunting and sexual harassment. He made my case for me.
The aggressive bullying of ME patients by an outsider who is not stricken with ME and his seeking to isolate them from the rest of the community after they have dedicated years of their lives to ME advocacy despite being sick is certainly in its own league. However, that does not mean that name calling from within the community is not immensely damaging. Although coming from only a handful, when these personal attacks occur, it is nevertheless counterproductive and destructive. But I do object to classifying civil disagreement as bullying, as has become increasingly popular.
I have no regrets about having gotten involved in ME advocacy—particularly in fighting to hold the Feds accountable for FACA and FOIA violations. My IOM FOIA lawsuit and judgment against HHS and NIH and award of $140,000 in attorneys’ fees, in addition to uncovering revealing correspondence within the agencies and demonstrating their contempt for patient interests, still serves as a deterrent to HHS/NIH stonewalling in future FOIA requests from the community and a reminder that the ME community can effectively assert its legal rights against government wrongdoing. I take comfort in knowing that my advocacy has moved us forward and I am at peace with my decision to take a new direction in my life now.
Though this decision has not come easily to me, it is ultimately not optional. It became clear to me months ago that it was necessary. Serendipitously and unrelated to my stepping back from advocacy, I am very fortunate to have finally found a way to spend more time with my loved ones while still receiving my infusions. It would be hard to be more excited about a new chapter in my life.
On a more mundane subject, I will mostly disconnect from the community on social media in terms of active engagement, so please do not be alarmed if you don’t see me around much. My blog will be maintained indefinitely, though in inactive form. And (never say never) I might even return to advocacy one day if the stars align.
I want to extend heartfelt thanks to those who have collaborated with me over the years. I am in awe of your dedication, integrity and courage. You have led by example and helped me grow into a better and more effective advocate. I wish you the best of luck in continuing the good fight. You will, no doubt, need it. I also want to thank the many who have supported me, cheered me on and believed in me. It has made such a difference.
Before parting, let me please encourage everybody to support advocates they feel speak for them, particularly with respect to government programs that amount to little more than window dressing or worse. Don’t assume your voices of protest don’t carry any weight. They can and often do. Take, for example, the IOM report. Despite containing some useful sound bites, it is dangerously flawed for a number of reasons. For example, not only is the suggested name trivializing and harmful, investigators have also started to use the IOM definition—which was expressly intended to be a clinical definition only—for research purposes, despite the fact that it does not contain any exclusions. Alarmingly, there has been no opposition from any of the IOM committee members to that highly-concerning, though predicable, practice. So far, the IOM definition has been used in research only in combination with other definitions, but that opens the door for the Wesselys of the world to take it one step further by resorting exclusively to IOM and selecting patients for their research who predominantly suffer from a psychological or other physiological condition, as those are not excluded under the IOM definition. It’s a dream come true for the psych cabal. But as seriously flawed as the IOM report is—and it certainly is—it is hard to argue with the fact that the strong ME patient community opposition successfully headed off an even more damaging outcome.
Therefore, please do not bow to the admittedly intense pressure to keep silent. Everybody has a right to voice his or her opinion whether or not it meets with the approval of those promoting the party line. It takes immense courage to stand up for one’s convictions, but deciding to sit on the sidelines instead of speaking up might just tip the scales. For example, there does seem to be a perilous double standard in the community. Fighting PACE is considered imperative and it indeed is. But fighting an NIH study, which has the potential of being more damaging than PACE—for example, having as the lead clinical investigator an ME-as-somatoform-disorder proponent—is all too often aggressively and baselessly labeled being negative, counter-productive or something much more sinister.
Hope is important. But without realism, hope will never materialize into tangible changes. I continue to hold out hope that justice for ME patients will eventually be achieved and that genuine progress and treatment for all is in our future. But remember that it will require holding the Feds’ feet to the fire and not letting them off the hook with improper definition and naming of the disease; woefully inadequate funding; meaningless lip service; bureaucratic corruption and stonewalling; legal violations and dangerously designed studies.