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And again! Tell Congress & the President to Cancel the IOM Contract

Ember

Senior Member
Messages
2,115
Urgent ME Advocacy Action: Ask Congress and the President to Cancel IOM Contract and Adopt CCC!

October 20, 2013
The government has reopened and Congress as well as the White House is fully staffed again. We must keep up the pressure to get the IOM contract cancelled and the CCC adopted. We must get our Congressional delegations to contact the key Senators and Representatives with jurisdiction over HHS -- the power to hold investigations, cut funding, and basically make the Department uncomfortable. We must email the President's science advisors. We must get HHS to listen and to ACT....
“Twenty Years and Counting” gives instructions:

For U.S. residents only;

For everybody - U.S. and international members of the community!
 

Delia

Senior Member
Messages
139
Location
Iowa
quote="Ember, post: 396934, member: 1749"]Urgent ME Advocacy Action: Ask Congress and the President to Cancel IOM Contract and Adopt CCC!

October 20, 2013

“Twenty Years and Counting” gives instructions:

For U.S. residents only;

For everybody - U.S. and international members of the community!
[/quote]

No, I've done all that.

My question was specifically about the suggestions to make complaints to the Inspector General as an additional avenue of resistance to the IOM contract.

But thanks!

:)
 

Ember

Senior Member
Messages
2,115
My question was specifically about the suggestions to make complaints to the Inspector General as an additional avenue of resistance to the IOM contract.
Your question wasn't addressed to me.
clear.png
o_O
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Thanks!

The link for the PCAST isn't great. Here's the PCAST email: pcast@ostp.gov

I have emailed and will call all 9 of my members of congress again (lived part time in 3 states), PCAST, Obama and Biden.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Here is the webpage to contact both Obama and Biden:
http://www.whitehouse.gov/contact

I have modified the sample letter for sending to Obama and Biden (as opposed to Congress)

Please order HHS to adopt the Canadian Consensus Criteria and cancel its contract with the Institute of Medicine (IOM) to redefine ME/CFS.

On September 23, thirty-five of the leading ME/CFS researchers and clinicians wrote to HHS Secretary Kathleen Sebelius calling for the Canadian Consensus Criteria (CCC) to be used as the sole case definition for ME/CFS. These experts also urged HHS to abandon its plans to contract with the Institute of Medicine (IOM) to use non-experts to create its own definition. On the same day, despite an outpouring of patient opposition, HHS announced that it was going forward with the IOM contract to develop its own clinical diagnostic criteria for ME/CFS, instead of adopting the 2003 Canadian Consensus Criteria (CCC) created and endorsed by ME/CFS experts.

Regarding the IOM contract, the thirty-five experts stated,“Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort (the IOM study) is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.”

The use of non-experts is especially concerning because, thanks to the bad definitions that HHS has promoted, the disease is so poorly understood that the medical community at large believes the disease is either not real or is a form of depression or deconditioning. ME/CFS is not deconditioning or depression. It is a devastating disease that causes neurological and immunological dysfunction and leaves patients bedridden, housebound and unable to work. ME/CFS costs the U.S. economy an estimated $17-23 billion dollars a year in lost productivity and direct medical costs.

Given the overwhelming opposition to HHS’ plans by both patients and experts, I am asking you to do whatever you can to get HHS to follow the lead of ME/CFS disease experts. HHS must cancel the contract with IOM. HHS must adopt the Canadian Consensus Criteria.

For more information, see the following links or send an email to meactnow@yahoo.com.

Link to Sept 23 announcement from HHS on the IOM contract - http://bit.ly/18m7XlJ
Link to Sept 23 letter to Secretary Sebelius from the 35 ME/CFS experts -http://bit.ly/15npS9B
Link to additional background - http://bit.ly/16qO
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Here is the letter rephrased for sending to PCAST, pcast@ostp.gov

Please ask President Obama to order HHS to adopt the Canadian Consensus Criteria and cancel its contract with the Institute of Medicine (IOM) to redefine ME/CFS!

On September 23, thirty-five of the leading ME/CFS researchers and clinicians wrote to HHS Secretary Kathleen Sebelius calling for the Canadian Consensus Criteria (CCC) to be used as the sole case definition for ME/CFS. These experts also urged HHS to abandon its plans to contract with the Institute of Medicine (IOM) to use non-experts to create its own definition. On the same day, despite an outpouring of patient opposition, HHS announced that it was going forward with the IOM contract to develop its own clinical diagnostic criteria for ME/CFS, instead of adopting the 2003 Canadian Consensus Criteria (CCC) created and endorsed by ME/CFS experts.

Regarding the IOM contract, the thirty-five experts stated,“Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort (the IOM study) is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.”

The use of non-experts is especially concerning because, thanks to the bad definitions that HHS has promoted, the disease is so poorly understood that the medical community at large believes the disease is either not real or is a form of depression or deconditioning. ME/CFS is not deconditioning or depression. It is a devastating disease that causes neurological and immunological dysfunction and leaves patients bedridden, housebound and unable to work. ME/CFS costs the U.S. economy an estimated $17-23 billion dollars a year in lost productivity and direct medical costs.

Given the overwhelming opposition to HHS’ plans by both patients and experts, I am asking you to do whatever you can to get HHS to follow the lead of ME/CFS disease experts. HHS must cancel the contract with IOM. HHS must adopt the Canadian Consensus Criteria.

For more information, see the following links or send an email to meactnow@yahoo.com.
Link to Sept 23 announcement from HHS on the IOM contract - http://bit.ly/18m7XlJ
Link to Sept 23 letter to Secretary Sebelius from the 35 ME/CFS experts -http://bit.ly/15npS9B
Link to additional background - http://bit.ly/16qOLY3