Petition to Stop the IOM Contract

[beaker]

Thanks to Mary Dimmock who set a petition up HERE . I know it has been in some of the other threads on this issue, but I think it deserves it's own thread to get more signatures.
{ED: If I missed a thread already created for this petition. Apologies and please merge.}
Currently there are only 2450 signatures. We need A LOT more.

I am trying to draft a letter to friends and family to email .
Please feel free to make constructive comments and /or use what you will of it for your own mailing lists. I know I have a big run on sentence. But my brain is shot.
And don't forget to sign it yourself !
Note: I linked to the article written at Pro-health as I thought is was most succinct ( didn't get involved in all the various issues ) and included the doctors letter . Then I linked directly to the petition for ease of use.
___________________________________________

Dear friends and family,

I'm trying to do a little , but important, advocacy. I figure, if I don't speak up , who will ?
I am asking for your help. All you have to do is click and sign a petition in support of the 35 ME/CFS doctors and scientists who wrote an open letter to the HHS ( Health and Human Services) to say that they have reached a consensus to use the CCC ( Canadian Case Criteria ) for their research and clinics, and to cancel the un-needed ( and bogus) committee being contracted by HHS to reinvent the wheel and set things way back.
I've been sick long enough. I don't need research to take more setbacks. If this goes through, the results will be devastating to the ME/ CFS community. ( That includes me ) Please take a minute to help.
HERE is an article that explains it and has a copy of the letter. HERE is the petition.
Thank you for your help and continued support.
PS If you are able to do more-- there are instructions on how to send a note directly to HHS and how contact your congressional reps on this matter. The loud voices win. Thanks in advance for speaking up.
And Pass it on !!

 

[alex3619]

Signed. I am not sure this is an ideally worded petition, but its a start. This is because the current situation has changed though, not that there is anything wrong with the petition.

 

[justinreilly]

beaker, this is not a petition to end the IOM contract. This is the earlier petition to adopt the CCC and change the name to ME. I was a named signatory so of course I think this petition is great and thank you for getting more signatures on it, but we also need a new petition(s) supporting the letter from the 35 experts (ie end the IOM contract and adopt CCC). I have been told someone is working on this, but don't know if that's accurate.

 

[beaker]

beaker, this is not a petition to end the IOM contract. This is the earlier petition to adopt the CCC and change the name to ME. I was a named signatory so of course I think this petition is great and thank you for getting more signatures on it, but we also need a new petition(s) supporting the letter from the 35 experts (ie end the IOM contract and adopt CCC). I have been told someone is working on this, but don't know if that's accurate.

Thank you for the clarification.
They both push for the CCC, I guess that's what lead me in that direction.
It amazes me, with so many folks sick, that so few have signed so far.
Maybe now there will be a few more ! : )

 

[Bob]

Here's another petition:

Thank you to our ME/CFS experts.
"We applaud these experts for showing exactly the kind of leadership and courage that is needed to change the future for ME/CFS patients. Please join us in sending them a note to thank them and show them our support."
http://www.thepetitionsite.com/898/238/310/thank-you-to-mecfs-experts/

 

[justinreilly]

Here's the petition to end the IOM contract and adopt the CCC (thanks to Patricia Carter). Please sign!

https://secure.avaaz.org/en/petitio...and_accept_the_CCC_definition_of_ME/?mobile=1

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 supporting the adoption of the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS.
[\quote]

 

[Nielk]

There is something you can do if you don't like or feel comfortable with what is happening with the HHS/IOM contract. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.