Several patients and advocates will travel to D.C. to attend the January 27, 2014 IOM meeting, potentially the only IOM ME/CFS meeting that will be open to the public. This trip will come at great cost to folks, not only financially, but more importantly in terms of the consequences to their health. The patients and advocates who will attend the meeting will do so representing the many patients who are sadly unable to do so.
If you want to help, here is something you can do. Please sign the petition linked to here. The petition asks HHS for the following:
We, the undersigned people suffering from Myalgic Encephalomyelitis, along with our families, carers and friends hereby ask Secretary Kathleen Sebelius to cancel the contract HHS signed with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. We further urge Secretary Sebelius to respect the consensus reached by a group of experts and adopt the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS.
Remember, even if you believe that this IOM “study” is inevitable, which is just a government talking point so far, protesting it increases the chances for a better outcome.
Thank you!
Thoughts About M.E. 
Done…even tho’ it may be a 2nd sign, but at least I’ll be counted once!
We are sincerely most grateful to those patients and advocates that are travelling to D.C. for the IoM meeting on January 27, 2014. Thank you very much for physically being there representing and fighting for us!!! A sad state of affairs when severely ill patients are put in a position to have to fight for our very lives at great added cost to our health–and add travel to that–as well as financial outlay.
Getting more signatures on the petition to STOP the IoM contract is a great suggestion as to how we can help 🙂 I hafta tell you–signing this petition and reaching out to others to ask them to sign has been a catalyst to me in ‘coming out of the closet’ with his horrid disease of ME/CFS–as I reached out to people in e-mails ‘with my own little blurb’ and giving them the petition link. Many really had NO concrete idea of what it is like to live with ME/CFS–that I am housebound like this–for they would only see me in that ‘brief snapshot’ out in the world–looking ‘fine’ and happy–altho knowing that I had ‘health problems.’ I received many supportive comments and many signed the petition. And as I would see some of their names scroll by on the petition site it really made me feel so incredibly grateful to know that these people would support me/us in signing. I really stepped out of my box to reach out to them–first a small closest group–then I thought what more can I do–who else can I reach out to–that was my next group. I made lists of names and for a third time reached out wider again — once, twice and then again–how could I not . . .
So thank you, Jeannette and Patrica C. for bringing this MOST important petition to the forefront again–let’s try to reach out to another ‘circle’ in our network–our lives are worth it–and so too for the next generation!!
Please know that we are with you in D.C. cheering you on!! Thank you all so very much!!!
Done.
Thank you, Jeannette. I wish I were healthy enough to go to Washington and join the brave patients who will be speaking against the IOM; you and the other speakers who do so will be speaking on behalf of thousands of M.E. patient who, like me, are too ill to leave their homes. We have seen our lives devastated for decades now, due to the negligence of the governments and our so-called “patient” organizations. I believe this HHS contract with the Institute of Medicine was meant to be the death blow to real research and effective treatments for M.E.–or at least to hide the illness as a psychological illness for another thirty years. Patients need to know that those who are saying we need to cooperate with the IOM by answering their question about what they should consider are actually trying to get them to make public statements which HHS and IOM can use to say patients approve of this IOM defintion of M.E as psychological beccause they participated in the process. They will pay no attention whatsoever to the content of the patients’ testimony; they will just use it to support the psychological definition of M.E. that IOM has contracted to provide.
So, anyone who wants another thirty years of suffering and death, go along with the IOM, Do what IOM says and answer their question. Then they can use your participation to ensure that M.E. patients are ignored for another thirty years.
But if you want M.E. patients treated with respect, and you believe M.E. is a physical illness–then tell the IOM that you want this contract terminated. Do not let them mislead you into helping them bury us for another thirty years.
By the way, in case anyone is concerned, the AVAAZ software will not allow you to sign twice, so if you’re not sure, please sign. If you have already signed, the software will tell you so.
Today there are 3920 signatures! This means thousands of M.E. patients and friends have banded together to STOP this IOM contract!
I am sincerely grateful for the efforts of those who are participating to fight this, at great cost to themselves, for thousands of us!
I thought I had already signed it, but it let me do it again. Done!
Also–I forgot to mention before pushing ‘send’ above–some of my peeps offered/volunteered to post the petition link to their FACEBOOK page (as I am not ‘fluent’ there); others automatically posted to FB. Hmmmm–soooo, with that–as I reached out further to others–I also mentioned that if they wanted to post this petition to their FACEBOOK page that was very OK with me!! And some also posted to TWITTER.
As a follow-up thank you to many of these supportive people–I sent them an update with a YouTube link of some of the ME/CFS advocacy happenings in D.C. The word is SPREADING!!! 🙂
I sincerely thank you.
“Remember, even if you believe that this IOM “study” is inevitable, which is just a government talking point so far, protesting it increases the chances for a better outcome.”
Right! The resignation of some people makes no sense and is no good for ME patients. Thank you!
Not only I have signed the petition but I’ve kindly “pestered” relatives and friends to do it too. We need to show the government that we are ready to fight and keep the momentum going. All we have owned so far was pain and neglect, from now on we have a Voice and Jeannette and Ed are two very important voices in our chorus.
Thank you -Grazie anche dall’Italia