David Tuller just published an excellent piece on the IOM saga on Buzzfeed, just in time before the IOM meeting today. Please, everybody, help to have it go viral. Tweet about it and put in on your FB wall, ideally linking from the Buzzfeed site. Leave comments. And like it on the Buzzfeed site. Thanks!
Here is the link to the piece.
Soundbite from Dr. Peterson: “I can’t imagine being on a committee for some disease I don’t know about.”
Thoughts About M.E. 
Thank you Jeannette, I sent out by iPhone to as many as I could remember. Thanks for being at IoM today! Anita
Anita Patton Sent from my iPhone
Excellent coverage–THANK YOU, David Tuller, for your time with this!! Thank you, Jeannette, for SPEAKING UP and sharing this most important information (personal information as well) to help others/the world understand what this horrid disease of ME/CFS is like–and our EXTREME CONCERN around the politics of the IOM contract. Thank you for the doctors’ inputs and comments–indeed–again, it makes NO good sense to have NON-Experts in ME/CFS on a committee to re-define this disease–IN fact, there are MORE NON-experts than there are experts—as per Dr. Peterson: “I can’t imagine being on a committee for some disease I don’t know about.”
EXACTLY—so WHAT IS going on here ??!!! Would you want a Realtor (an expert in Real Estate) to help define Engineering Specifications for a building . . . ?? NO–you would want the experts–ENGINEERS! ME/CFS is a COMPLEX illness–and as such DEMANDS ME/CFS Expertise across the board. The IoM contract by design and fixed parameters is set to FAIL in helping ME/CFS patients.
I am listening to the IoM meeting as it is streaming live right now–a lot of rules and politics talking–emphasis given in ‘selling’ the non-experts–BUT–the are experts in their fields—thank you very much–STILL MAKES NO SENSE!!
Thank you, Jeanette, for being super strong yet vulnerable and the same time. It is brave to expose yourself like that. Your story is so sad but gives up hope. David’s piece is fantastic and truly does justice to our plight. My only problem is the darn headline. How many times have we seen this one? In our future interactions with the press we need to REFRAME our story by describing it as a HUMAN RIGHTS VIOLATION which URGENTLY needs to be addressed. This is an extension of the larger health care debate. We are essentially not receiving health care. I’m afraid if we don’t take a stronger line then the online conversation will not shift. (I know you don’t have influence over the headline but perhaps the movement’s “spokespeople” can agree on this new talking point and use it going forward).
I know, Pam 😦
The P2P is the JURY ?? This is like Alice in Wonderland going down the Rabbit Hole into a verrrry strange DISTORTED NON-SENSICAL world with the MADD HATTER and CHESHIRE CAT charged with being on the IoM committee as experts–i.e., the NON-experts in ME/CFS–as well those charged with ‘writing’ the P2P report–tasked to complete their written report within 24 hours of the end of the IoM committee meetings.
Do not get me started. They say these crazy things and expect us to act as if it was normal.
Indeed. Ess is referring to Susan Maier’s comments today at the IOM meeting regarding the P2P panel makeup of non-ME/CFS experts-not a one-they are specifically disqualified.
Maier called this the “jury model.” The results of this approach are as likely to reach the right result as the OJ jury! Or a jury of all white men in the South circa 1950 deliberating the fate of a black man accused or raping a white woman. When you think about this, it becomes ever more ludicrous. And one day to write up the report?? Juries are given a little more time than that.
Alice in Wonderland is a pretty useful comparison if it weren’t all so sad and unnecessary.
IOM meeting—WHAT happened to the sound/visual presentation that J. Spirrow is presenting on behalf of Dr. Derek Enlander–IT ‘died’ just as JS was announcing ‘A group of us are forming and Academy of ME . . . ??? (referring to Dr. Enlander)
Jay Spero tried with Dr. Enlander’s thoughtful presentation. It deserved attention!
Everything indeed was topsy turvy at the IOM hearing. Lewis Carroll would not be able to believe it!
Great job, Jeannette!!! Very IMPACTFUL–MUCH OPPOSITION by the ‘3-minuters’ !!! AND–it is so validating that we have the support of the medical experts making their voices known today, including Dr. Derek Enlander’s proxy statements–until it was cut off—did I say, ‘Curious and Curiouser’–ohhh, yessss, that phrase does come from Alice in Wonderland!!
The ME/CFS Experts and Researchers so want to help us and ‘DO NO HARM’!!! Thank you so much to you and everyone for speaking out at the IOM committee meeting today on behalf of the millions of us!! I am so sorry for all the effort and taxing of health this is causing for you and others that have travelled to D.C. I hope that you can get some well-deserved rest–realizing that is not much comfort in terms of ME/CFS symptoms. Take good care!
Hi, Jeanette. Hope you are recovering and reunited with your family. I was just looking at David’s article and the almost 7,000 “Likes” it received. I’m willing to bet that no article on Buzzfeed has every received that staggering amount of support. How do we leverage this and take advantage of this momentum? Do we encourage him to pitch it to a major national daily such as NY Times, Washington Post or news service like AP, citing the 7,000 recommendations as ammunition? Do we solicit his own ideas? Would love your feedback.
Jeanette,
Your interview with David Tuller in his article were outstanding and heart-breaking. Rest up. Aimee and Ed need you, and we appreciate you, Aimee, Ed and David.