(Please re-post)
I don't think this has been highlighted here so I thought I'd do it.
People need to do what they can to make sure the CFSAC recommendations are
highlighted and preferably acted on, as much as possible. As people will
recall, I feel strongly about recommendation #3 (which is also mentioned in
recommendation #4).
Tom
=======================================================
From the December edition of the CFIDS Association of America's CFIDSLink
e-newsletter:
-----
Write to Secretary of Health Kathleen Sebelius and elected officials to
request action http://www.capwiz.com/cfids/home/ on the CFS Advisory
Committee's latest set of recommendations and the urgency of expanded
research. We've made it easy for you with letter templates at our Grassroots
Action Center.
-----
[TK: I've copied below the intro bit. There is then a sample letter (which
I haven't copied in) that can be edited]
----
http://www.capwiz.com/cfids/issues/alert/?alertid=13463086&type=CU
Write to Secretary of Health Sebelius
Ask her to implement the CFSAC's recommendations
Kathleen Sebelius is the Secretary of Health and Human Services. She is
responsible for all the agencies of the Department of Health & Human
Services (DHHS), including the National Institutes of Health (NIH) and U.S.
Centers for Disease Control & Prevention (CDC). On October 29-30, the
federal CFS Advisory Committee met and passed a set of four recommendations,
copied below. Please use our form letter to support swift implementation of
these recommendations by Secretary Sebelius.
Recommendations from the CFS Advisory Committee
to the Secretary of Health & Human Services October 30, 2009
Recommendation 1:
The CFSAC renews its recommendation to the Secretary to establish Centers of
Excellence for CFS that would effectively utilize state of the art knowledge
concerning the diagnosis, clinical management, treatment and clinical
research.
Recommendation 2:
The CFSAC renews its recommendation to the Secretary, as submitted 6 months
ago, to establish progressive leadership at the CDC. It is disappointed that
no response has been made to the earlier recommendation and it is interested
in getting feedback, especially in light of the comments made to the New
York Times by Dr. Reeves that reflect an inappropriate bias and undermine
others' CFS research.
Recommendation 3:
The CFSAC objects to CDC's continued use of the inadequate and inappropriate
2005 "empiric" research definition for CFS. It recommends that CDC abandon
the empiric case definition and the fundamentally incorrect
conceptualization of chronic unwellness as being equivalent to CFS
incorrect.
Recommendation 4:
The CFSAC has significant concerns about the CDC's five-year plan. In
particular, the priorities articulated in its recommendation of May 2009
have not been adequately captured in the latest draft. The CFSAC renews its
recommendation that CDC prioritize: identification of biomarkers and (viral)
etiology of CFS; partnership with organizations representing CFS scientific
expertise to create guidelines for adult and pediatric management; provide
web based guidelines for CFS management given our current state of knowledge
and expert opinion; and provide comprehensive information about CFS in
partnership with CFS experts to the scientific community, medical and mental
health providers, educational institutions and the public for both adult and
pediatric CFS through DHHS resources. CDC's continued use of the inadequate
and inappropriate 2005 "empiric" research definition for CFS. It recommends
that CDC abandon the empiric case definition and the fundamentally incorrect
conceptualization of chronic unwellness as being equivalent to CFS
incorrect.
---------
December edition of CFIDSLink:
http://www.cfids.org/archives/2006-2010-cfidslink/december-2009.asp
I don't think this has been highlighted here so I thought I'd do it.
People need to do what they can to make sure the CFSAC recommendations are
highlighted and preferably acted on, as much as possible. As people will
recall, I feel strongly about recommendation #3 (which is also mentioned in
recommendation #4).
Tom
=======================================================
From the December edition of the CFIDS Association of America's CFIDSLink
e-newsletter:
-----
Write to Secretary of Health Kathleen Sebelius and elected officials to
request action http://www.capwiz.com/cfids/home/ on the CFS Advisory
Committee's latest set of recommendations and the urgency of expanded
research. We've made it easy for you with letter templates at our Grassroots
Action Center.
-----
[TK: I've copied below the intro bit. There is then a sample letter (which
I haven't copied in) that can be edited]
----
http://www.capwiz.com/cfids/issues/alert/?alertid=13463086&type=CU
Write to Secretary of Health Sebelius
Ask her to implement the CFSAC's recommendations
Kathleen Sebelius is the Secretary of Health and Human Services. She is
responsible for all the agencies of the Department of Health & Human
Services (DHHS), including the National Institutes of Health (NIH) and U.S.
Centers for Disease Control & Prevention (CDC). On October 29-30, the
federal CFS Advisory Committee met and passed a set of four recommendations,
copied below. Please use our form letter to support swift implementation of
these recommendations by Secretary Sebelius.
Recommendations from the CFS Advisory Committee
to the Secretary of Health & Human Services October 30, 2009
Recommendation 1:
The CFSAC renews its recommendation to the Secretary to establish Centers of
Excellence for CFS that would effectively utilize state of the art knowledge
concerning the diagnosis, clinical management, treatment and clinical
research.
Recommendation 2:
The CFSAC renews its recommendation to the Secretary, as submitted 6 months
ago, to establish progressive leadership at the CDC. It is disappointed that
no response has been made to the earlier recommendation and it is interested
in getting feedback, especially in light of the comments made to the New
York Times by Dr. Reeves that reflect an inappropriate bias and undermine
others' CFS research.
Recommendation 3:
The CFSAC objects to CDC's continued use of the inadequate and inappropriate
2005 "empiric" research definition for CFS. It recommends that CDC abandon
the empiric case definition and the fundamentally incorrect
conceptualization of chronic unwellness as being equivalent to CFS
incorrect.
Recommendation 4:
The CFSAC has significant concerns about the CDC's five-year plan. In
particular, the priorities articulated in its recommendation of May 2009
have not been adequately captured in the latest draft. The CFSAC renews its
recommendation that CDC prioritize: identification of biomarkers and (viral)
etiology of CFS; partnership with organizations representing CFS scientific
expertise to create guidelines for adult and pediatric management; provide
web based guidelines for CFS management given our current state of knowledge
and expert opinion; and provide comprehensive information about CFS in
partnership with CFS experts to the scientific community, medical and mental
health providers, educational institutions and the public for both adult and
pediatric CFS through DHHS resources. CDC's continued use of the inadequate
and inappropriate 2005 "empiric" research definition for CFS. It recommends
that CDC abandon the empiric case definition and the fundamentally incorrect
conceptualization of chronic unwellness as being equivalent to CFS
incorrect.
---------
December edition of CFIDSLink:
http://www.cfids.org/archives/2006-2010-cfidslink/december-2009.asp