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IOM- list of all links for journalists and us

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
The IOM contract on ME/CFS is just beginning and the online activity is already extensive. In order to keep a record please post all links to everything here. That would include articles, blogs, discussion threads, and relevant information such as the IOM Gulf War Illness record. Dates and concise explanations and/or quotations would help. Don't worry too much about posting something that has already been listed.

Hopefully investigative journalists will cover this crucial story. We need help with this.

Edited to add an abbreviated URL for this thread for twitter and elsewhere

http://tinyurl.com/khkblxv
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
September 28, 2013
letter by Dr. Lily Chu
 
"Dear Secretary Sibelius, Dr. Koh, Dr. Maier, Dr. Unger, Dr. Lee, Dr. Fineberg, and Dr. Behney,
 
As a physician, health services researcher, and person affected by myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS),"...
 
"This history is largely why I and other patients, now joined by expert clinicians and researchers, experience a collective shudder of fear and horror when they hear DHHS plans to"...
 
http://twenty-years-and-counting.blogspot.com/2013/09/one-heck-of-inspiring-anti-iom-study.html
 
 
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
Doesn't anybody else think it's important to keep a record in one place that is as complete as possible of what's going on with the IOM contract? We could really use media coverage beyond the usual community internet outlets, and journalists don't have much time to do the research. I'm having severe computer problems at present.
 

readyforlife

Senior Member
Messages
137
I'm brain dead and i'm trying to follow what you are doing. So are you putting information on here so if journalist want to investigate more on the IOM contract they can be directed to this thread?
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
I'm brain dead and i'm trying to follow what you are doing. So are you putting information on here so if journalist want to investigate more on the IOM contract they can be directed to this thread?

Yes, and for us to be able to follow it better with our various neurological disabilities including just mental stamina problems. This is likely going to be long and hard fought saga with immense consequences for the entire community.


I'm asking for everybody to help, please.
 

Hip

Senior Member
Messages
17,809
The redefinition of ME/CFS that the IOM are planning would cut off financial support for ME/CFS patients, marginalize clinical and medical help for ME/CFS patients, and cause cutbacks in research into ME/CFS.

The IOM definition would be one hell of a blow to ME/CFS, so we cannot let this go through.
 
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Nielk

Senior Member
Messages
6,970
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.