A New Direction

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.

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26 Responses to A New Direction

  1. Ella Peregrine says:

    dear Jeannette,

    my deepest, most sincere gratitude to you for all you’ve done, and for the example of integrity in a principled struggle that you have embodied.

    your voice and presence will be sorely missed.

    with immense respect and admiration,

    Ella

  2. Ess says:

    Thank you, Jeannette, from the bottom of my heart. All the very very best to you and your dear family. xx

  3. Rosie says:

    Sincerely hope your new direction is rewarding… but don’t be a complete stranger 🙂 It’s been great to see your advocacy in action 🙂

  4. Fly Bo says:

    Thanks for all your years of advocacy. I wish you and your family the very best of luck and good wishes.

    Again, Thank you.

    fly

  5. Andy says:

    Thank you for flagging up the ramifications of James Coyne’s words on the ME community, Jeannette. I am sorry that the episode had such an effect on your own health. Advocacy is an exhausting undertaking at the best of times and a more than arduous one for those of us with less than optimal health.

    Your blog posts and James’ responses provide a lasting commentary that we can refer people back to as required. Allies from within the medical community can be of great value, but some come at too great a cost.

    All good wishes to you and thanks for your work on behalf of us all.

  6. Gabby Klein says:

    Dear Jeannette,

    I have to admit that this is a sad day for me. I know that we have never personally met and only interacted sporadically on social media but, I have to tell you that your advocacy work has been one that I have looked up to with awe and respect since I started following the advocacy world of ME.

    Your astuteness, frankness, honesty and your inner strength has shined through in all your advocacy efforts. Whether it is with writing blog posts on this blog site (probably more than 100 over the years); testifying at CFSAC personally, on the phone or in writing; testifying at the IOM in person; attending conferences and workshops; filing for FOIA from the government health agencies; bringing a lawsuit against HHS and NIH and winning; helping other advocacy efforts behind the scenes; being supportive of other ME patients – whether with words or financially; and through all these actions, remaining a steadfast champion for the fight for justice and the rights of ME patients worldwide.

    I am truly sorry for the abusive hits you have had to unfairly endure from Coyne’s deranged actions. I am even more sorry for the backlash you have had to endure from others who piggybacked on this atrocity.

    I just want to leave you with these words of comfort – the majority of the ME community appreciates all the efforts that you have extended for our benefit and we shower you, your courageous husband and gorgeous daughter with all the blessings in the world!

  7. oniricale says:

    Dear Jeannette

    You will be missed.
    While I feel sad to hear you have decided to remove yourself from ME advocacy, I am very grateful for your involvment and accomplishments. Thank you for your commitment and ‘not letting them off the hook’ on so many occasions.

    It is great to hear that you have found a way to spend more time with your husband and daughter.
    My best wishes for this new and and exciting direction.

    Take care and again thank you.

  8. Ann Cavanagh Kramer says:

    Jeannette,

    “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.”

    This brings me to tears. I’m am so happy for you and grateful for this. This is what you deserve! Keep enjoying your most important role, being Mom.

    Thank you for all you have done for so many of us.

    Much love to you and yours,
    Ann

  9. Dear Jeannette,

    I want to shout “Don’t go!” and tell the M.E community “What do you think you are doing?!”. But.

    By valuing yourself you beat the invalidators. By standing up for yourself and others, you continue to lead the way for all M.E patients. You are winning.

    If thoughts about M.E ever occur, switch off the comments here and send them out. They will be picked up.

    Thank you so much for all you have done for people with M.E. I wish you such happiness. You have truly earned it.

    James/.
    @batteredoldbook

    • Carrie says:

      “By valuing yourself you beat the invalidators. By standing up for yourself and others, you continue to lead the way for all M.E patients. You are winning.”

      YES!!!

  10. Penelope McMillan says:

    Thank you Jeannette, for all you have done.
    You are a warrior and an inspiration to all of us who will be carrying the work forward.
    I am so glad to hear that you will be able to turn your energies toward your loving family – surely the best antidote for what has been going on. Enjoy!

  11. Ess says:

    ***Nugget*** “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.”

  12. Jeannette, I have more respect for you personally, as well as an activist, than I have words for. I totally understand your decision, knowing firsthand what M.E. can do to our relationships, especially the relationship with our children. I’m tickled to death for you that you’ve figured out a way to have your family AND treatment.
    I’m always here should you ever need me, or for no reason at all, to crib a line from “Labyrinth”

  13. Carrie says:

    Jeannette, my heart is filled with gratitude for your immense contributions to our community.

    Indeed, you have moved our cause forward in ways nobody else ever could. Your work is inspirational.

    Thank you for your tenacity in promoting justice and equality for our marginalized group.

    Thank you for donating your time and legal expertise and for putting your own money on the line to pursue a successful and revealing case against NIH.

    Thank you for setting the groundwork for future advocacy and inspiring us to exercise our right to speak up and ask for what is deserved no matter who tries to silence us.

    Most of all, thank you for your dedication and compassion for patients. So often when many of us felt depleted and defeated, you still hung in and fought for us, most likely at the expense of your own health.

    You will certainly be missed, but we take heart in knowing you are now able to spend well-deserved time with your family.

    Speaking of which, thank you Edward for your participation and support for our cause. Few healthy people step up as you have. It is very much appreciated.

    Best wishes to you both.

  14. Utting Wolff says:

    A huge blow to the ME community but a huge personal gain. I am so happy for you and your family. With love, Claudia xxx

  15. Laurel says:

    Jeannette, I’m so, so happy that you can spend more time with your family and still get your infusions. I hope that your health improves steadily.
    Thank you so much for all the countless hours you have spent in advocacy. You have made a big difference.

  16. Pat Vogel says:

    Thank you Jeannette for your fierce attitude and advocacy work. Very happy that you can spend more time with your loved ones. Wishing you better health and better days ahead, take care.

  17. Jane Pannell says:

    Much gratitude to you. You are truly an inspiration to so many PWME! I’m so happy you’ll be able to spend more time with your beautiful little girl, and I so hope your health will improve.

  18. Jen says:

    So sorry to hear you are stepping back but what a blessing to be able to spend more time with your family yet still get the care you need. Thank you for all of your hard work and sacrifice over these many years.

  19. Anonymous says:

    Thankyou Jeannette for being you and for making the difference that you have for the M.E community.
    You have a beautiful family and family comes first!
    So glad you can get your treatment and be with your family at the same time now!
    I was ill when my kids were your daughters age, I do so understand what its like, its great that you can be with your daughter more now.
    I feel like you will be back but maybe thats my optimistic thinking 🙂
    God bless you Jeannette and your family and thank you again so much! xoxoxo

  20. Terry Gilmete says:

    Jeannette,
    Wishing you health, joy, and happiness in the company of your dear family!! All my best to you all. Thank you for all you have done for all of us!! Take good care…
    Terry

  21. Gina B says:

    Dear Jeannette,

    You are an amazing inspiration to me. On my weakest days I think of your perserverance regarding FOIA, sharing the comments of disdain directed at us from those that are paid to protect us and the sheer ignorance from the non ME patients with various agendas.

    I think you rock! Ed rocks and your daughter is so beautiful and happy! Until you feel like posting again!

    Sincerest gratitude, love, and respect,

    Gina

  22. Rebecca says:

    Jeannette, best of luck to you as you begin a new chapter. Many thanks for your advocacy.

  23. Rivka says:

    I’m so grateful to you for all you have done for people with ME. I really really don’t want to see you take a step back from advocacy, but understand the desire and need to spend what energy you have with those you love. The work you have done for ME patients is really quite amazing. We are so appreciative!

  24. Anonymous says:

    Thank you for your strength, determination, principled advocacy, and hard work on behalf of the ME/CFS community. Glad you have found a way to have treatment and be with your family.
    Agree very much with your last two paragraphs, especially your saying that hope has to be based on realism, and that we can never let up on putting the federal government’s “feet to the fire.”
    We can’t do that or accept crumbs thrown to us to circumvent real scientific research into causes of this disease, biomarkers and treatments.
    I wish that we could all do what ACT-UP did for people with HIV and AIDS, as you have said.
    But even if we can’t, there is a lot we can do to keep the pressure on and accept nothing less than what we deserve — causes and curative treatments.

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