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Stop the IOM! Adopt the CCC!

by Jeannette Burmeister category: Health

“Stop IOM non-experts from defining #MECFS! Adopt CCC per experts! Stop org COI. #StopIOM #AdoptCCC #HHS http://thndr.it/1i99XF3

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Jeannette Burmeister
Supporters
406 of 100
406% of goal supported
Social Reach
127,555
People
Time Left
Complete
Ends May 05, 8:00 AM EDT

Complete

This campaign ended on May 05 at 8AM

Detailed instructions for participating in this thunderclap campaign can be found here.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious, often disabling, neuroimmunue disease affecting hundreds of thousands of American men, women and children, and millions of people worldwide. In order to jump start progress and lead to much more rapid advancement in research and care for ME/CFS patients, 50 ME/CFS experts have, in an open letter to Secretary Sebelius:

  • adopted the Canadian Consensus Criteria (CCC),
  • strongly urged HHS to follow their lead by using the CCC as the sole case definition for ME/CFS in all of HHS’s activities related to this disease,
  • cautioned Secretary Sebelius that failure to do so will significantly impede research and harm patient care and
  • strongly urged Secretary Sebelius to abandon efforts to engage the Institute of Medicine (IOM) because it lacks the needed expertise to develop “clinical diagnostic criteria” for ME/CFS and because doing so would  would waste scarce taxpayer funds and threaten 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.

HHS ignored the experts and entered into a $1 million contract with the IOM—an institution without any experience for such task—to develop diagnostic criteria for ME/CFS. The IOM panel consists of a majority of non-experts. The IOM, as an institution, has an organizational conflict of interest (organizational COI), currently being investigated by the Office of the Inspector General, due to its impaired objectivity caused by the institution’s opining in official IOM reports on the definition of ME/CFS on various prior occasions. HHS has issued misleading statements about the nature and terms of, and the parties to, the contract and has acted in unprecedented secrecy surrounding the contract. For example, the agency has deleted information from the Internet that strongly indicates that HHS has violated contracting procedures. Furthermore, HHS and NIH violated federal law and have been sued in federal district court relating to the IOM contract.

Defining a disease as complex as ME/CFS is not purely an intellectual exercise. It requires the expertise of ME/CFS specialists who have substantial experience in treating and researching this disease. The IOM does not have that necessary expertise, just as it didn’t for Gulf War Illness, a disease as complex as ME/CFS and the first disease the IOM has tried to define. Shamefully, the IOM had to admit that it was unable to do so despite having been paid $850,000 of taxpayer money for it. If the ME/CFS IOM study proceeds, the continued abuse of ME/CFS patients based on an unscientific and flawed IOM definition is all but guaranteed for decades to come.

The IOM study is a train headed for a cliff that needs to be stopped now before any more taxpayer money is wasted and before patients are further harmed. Please join this advocacy movement to stop the IOM from redefining a disease that our experts have already defined and participate in this Thunderclap campaign before the day of the next IOM meeting on May 5, 2014. Let our voices be heard!


  • Please ask friends to support us. Thank you!

    April 22, 2014
    Hello Everybody,

    Just a quick status update. We broke 200 today. That is more than 200% of the projected number of supporters. Thanks to all of you who have participated. It is so much appreciated!

    Let's see if we can make it to 300 or more. We almost have 2 weeks left to go. If you are able, would each of you please ask three other people to sign up. It's hard for me to drum up support all by myself. There is strength in numbers.

    Here is to making our voices heard!
    Jeannette


Organizer

Jeannette Burmeister
@JKBurmeister

I am a member of the strong ME/CFS advocacy movement that calls for the termination of the HHS/IOM contract and supports the ME/CFS experts' recommendation to Secretary Sebelius to immediately adopt the Canadian Consensus Criteria.

ThoughtsAboutME.com

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