Simple instructions to e-mail the President's science advisers to cancel contract with IOM

Nielk

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Simplified instructions for e-mailing President Obama’s science advisers


Go to: http://www.whitehouse.gov/administration/eop/ostp/contactus

Where it says 'direct your comment'; choose PCAST

Copy and paste the comment below:



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 hads 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 the 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 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 Concensus Criteria.
 

SOC

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Nielk ~ great idea to address this to the administration's science advisers!

This letter might be punched up a bit to focus more heavily on scientific issues and less on political issues, although both are important -- different facets of the message for different audiences, I'm thinking.
 

JohnnyD

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There is also a typo:

The use of on-experts is especially concerning...

should be:

The use of non-experts is especially concerning
 

Nielk

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This one came back as undeliverable. Do you have a better email address for Osama's science advisors?

Thanks for letting me know. It was working the other day. I changed the instructions above, going directly to their website.

Thank you for taking the time to do this.:)
 

peggy-sue

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What bit do I send it to on the PCAST page - I can't find anything to send it to at all...

or am I discounted 'cos I'm not in America?
 

justinreilly

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@Peggie-sue, Gabby linked to the OSTP page, not the PCAST page. For me it's showing up as she described, it's a page to message comments. I think you may be right that it is not showing you the comment form because you are from outside the US.
 

peggy-sue

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I found an email address.
I have added a couple of personal words, saying that it is a matter of international concern because this contract will have world-wide implications for sufferers..

It is sent from my own email address - it will probably be junked as spam. My email address is weird.:oops: