Opportunity to make a difference for ME/CFS in the US?

Following is the introduction to a new group at the Phoenix Rising forums by Cort Johnson.  I just wanted to throw it out there for anyone with ME/CFS who might be interested in taking some action to hopefully show the Centers for Disease Control that they've taken a turn onto the wrong path in understanding and research for our illness.  If you go to this forum, Cort has outlined a very good history of what has occurred recently in the CDC's outlook and future plans for CFS research. 

The group can be found at:  http://forums.aboutmecfs.org/group.php?groupid=4

M.A.D. (Making A Difference) About ME/CFS Group

Group Maintained by Cort

The M.A.D. (Making A Difference) Group was formed in response to a potentially pivotal event that will occur shortly; the Oct 29th/30th CFSAC meeting at which the CDC will present its Five Year plan for ME/CFS.

The first project of the group is creating a strong voice for change in the CDC's CFS research program at the Oct. 29/30th CFSAC meeting. With patients, support groups and researchers united this meeting has the potential to become an epochal event in ME/CFS history. Dr. Jason has called it the biggest event in 25 years. We intend to do our best to make it so.

If you're interested in making a difference in the biggest research program on the planet please join this group.

Date Oct. 29,30th (Still waiting on date of CDC presentation)
Place: Department of Health and Human Services Building on NW corner of the Mall - cate-corner to the National Museum of the American Indian and across from the Botanical Garden and the Pool. See Below - Click on the picture to make it bigger.

Purpose: Agitate for Change in the CDC's CFS Research program as they produce their 5 Year Plan for CFS

End Quote

There is also a petition at http://www.ipetitions.com/petition/empirical_defn_and_CFS_research?e for the U.S. CDC to undo their decision to use the "empirical definition" of CFS, rather than the Canadian definition.

For anyone who's unfamiliar with these shenanigans, the "empirical definition" says CFS is any fatigue lasting more than six months and that significantly interferes with life. This definition was designed to bring in a lot of people who have clinical depression, or inactivity, or stress managment issues.

 This creates an 80% success rate for graded excercise and CBT, which makes the insurance company accountants who determine our health care very, very happy.  Of course, the 20% of patients who actually have CFS by the Canadian definition get worse with this treatment, but who can argue with an 80% success rate? If you care, sign the petition -- the more voices, the harder to ignore them.


On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Thank you, Ron, for the added opportunity!  It's good to know there are efforts out there to get this corrected.  Thank you, also, for articulating the problem so well.  I couldn't make my brain do that. 

This seems to be a very important opportunity to get things headed back in the right direction for ME/CFS patients.  According to Cort Johnson, there will not be another chance like this for 10 years, so now is the time!

I'll post this llink on the Phoenix Rising forum.

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.