There are indications that HSS and CAA are moving very quickly before any significant opposition can be effectively mounted against them. There is indication that they are selecting members for the IOM through Pandora
.http://www.mecfsforums.com/index.php/topic,17936.0.html.
Patients need to post on Pandora Facebook asking if this is correct and stating your opposition to the IOM based on the outcome of VA IOM categorizing GWI as CMI as a psycho-somatic disorder offering only psychiatric modalities as treatment options.
This means that if ME/CFS is labeled CMI it will be disseminated to medical clinicians across the country.
1.Contact Pandora and protest that the CAA and IOM do not represent your viewpoints or the viewpoints of ME/CFS researchers.
I could not contact Pandora's Facebook
https://www.facebook.com/PANDORAORG
Call them and voice your opposition
http://www.pandoraorg.net/Contact.html
2. It appears this push for IOM participation has received approval within the White House.
Contact or email the White House
state the following http://www.whitehouse.gov/contact/write-or-call#call
A. The CAA represents a small minority of patients. They are only one patient advocacy group. They do not represent your viewpoint nor the viewpoints of the majority of ME/CFS patients nor the viewpoints of ME/CFS researchers and clinicians.
B.. That you are opposed to the HSS ME/CFS IOM contract and want it rescinded based on cost and the fact that criteria has been already adopted by researchers and clinicians
C. If you are sending an email, link to the sites where the petitions opposing IOM contract are located.
https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/
http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/
3. Alert the ME/CFS researchers/clinicians concerning this latest push by HSS and CAA on nominating members to IOM board.