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An Open Letter to the Honorable Kathleen Sebelius

Ember

Senior Member
Messages
2,115
Dr. Bateman: “I think it is time to grow. Truth will prevail.”:angel:

Perfect is the Enemy of Good :(

Posted on October 2, 2013
Does anybody really think that the IOM contract is an opportunity to create “evidence based [sic], broadly accepted clinical and research tools, [sic] that can accurately include or identify all subsets of the broad heterogeneous group that present under any case definition of CFS” using biomarkers, as Dr. Bateman suggests?
 

Ecoclimber

Senior Member
Messages
1,011
Dr. Bateman: “I think it is time to grow. Truth will prevail.”:angel:

Perfect is the Enemy of Good :(

Posted on October 2, 2013

As I have previously posted, the IOM was awarded another contract with the VA on GWS. Previous to 1997, the VA labeled GWS as psychiatric and treatment followed various psychological modalities. The Veterans took their case to Congress where a Congressionally mandated Research Advisory Board was authorized to reseach the causes of GWS and establish criteria for this illness.

The previous head of the IOM stated that this is unprecedented for the IOM to defined criteria for an illness. The findings of the IOM board ignored all the scientific evidence from the Congressional Board and redefined GWS as CMI !! GWS was considered a psycho-somatic disorder.The symptoms are similar to ME/CFS and Fibromyalgia. In other words, policy from the Executive Branch of Government took precedent over the Legislative Body in Congress. The IOM also considered a larger pool of veterans that were not involved in the 1991 Gulf War.

Please Read about it here and click on the links within the article
Gulf War illness advocates skeptical of institute panel

Now we have another award to the IOM to investigate and establish criteria for ME/CFS/Fibro. This is piggybacking off the recent VA IOM decision. The outcome base on the criteria established for GWS will be the same! CMI and medical treatment will be discontinued.

The decisions by Secretaries of both departments indicate that this policy was approved at the highest level within the White House. So I would address any letters and petitions to the President, Vice President and staff members within the White House.

It is not effective to write to lower members within the DHHS as this decision is formulated at the Secretarial level of DHSS.

Get everyone to sign the petition Tell DHHS: We have suffered long enough
http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/

If the IOM categorizes ME as CMI, than funding for scientific reseach from both public and private sources will evaporate. Treatment by the medical profession will be limited to psychiatric modalities. I believe that Professor Wessely's influence has impacted this administration concerning GWS and ME/CFS.

So far there has only been tepid response amogn this patient community to this recent announcement which is disheartening to say the least. This decision will impact each and every one of you in seeking medical treatment! Treatment protocal will be limited to CBT, GET and anti-dpressants medication.

Eco
 

Ember

Senior Member
Messages
2,115
SIGN THIS PETITION

750 signers. Let's reach 1,000

Created by Patricia C. United States of America
To be delivered to: Kathleen Sebelius, Secretary of Health and Human Services, United States of America
Posted October 7, 2013
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.

Why this is important

Millions of people worldwide suffer from Myalgic Encephalomyelitis (M.E.). For decades, sufferers have been left with no real biomedical research and no effective treatments. Now the HHS is attempting to prolong this time by contracting with the Institute of Medicine (IOM) to redefine the illness. This is unnecessary because experts in the illness, researchers and clinicians alike, have reached a consensus that the Canadian Consensus Criteria (CCC) should be used for both research and clinical purposes. They have sent an Open Letter to Secretary Sebelius expressing their support for the CCC. (See: http://www.mecfsforums.com/wiki/Open_Letter_to_Hon._Kathleen_Sebelius_9/23/2013 ). This HHS contract with IOM would simply be a waste of precious resources.
http://www.mecfsforums.com/index.php/topic,17919.0.html