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You can stop writing the Senate about CDC funding now

caledonia

Senior Member
Please scroll down through the comments and note MEadvocacy.org's reply. We were at the House and Senate Appropriations meetings this spring and also talked to many representatives, as well as did two demonstrations. In addition, two other independent ME advocates also made the rounds.

So saying that there was no contact from anyone representing ME(CFS) is simply not true. It kind of sounds like a case of the right hand not knowing what the left hand is doing (putting the best possible spin on it), but now that this staffer has made himself known, that will no longer be the case. :)
 

viggster

Senior Member
Messages
464
Hi - I appreciate what you're saying, but apparently your message did not reach the right people. Continuing to flood Mr. Pak with messages will be counterproductive - it's not his job to respond to individual constituents. His job is to meet with disease groups, so I'd encourage you to consider that.
 

caledonia

Senior Member
Hi - I appreciate what you're saying, but apparently your message did not reach the right people. Continuing to flood Mr. Pak with messages will be counterproductive - it's not his job to respond to individual constituents. His job is to meet with disease groups, so I'd encourage you to consider that.

MEadvocacy.org or their members are not flooding Mr. Pak with messages.

This year's funding is complete. What I was talking about was for next year. MEadvocacy.org is a disease group. Therefore, he would be the perfect person to meet with early next year.
 

Nielk

Senior Member
Messages
6,970
Hi - I appreciate what you're saying, but apparently your message did not reach the right people. Continuing to flood Mr. Pak with messages will be counterproductive - it's not his job to respond to individual constituents. His job is to meet with disease groups, so I'd encourage you to consider that.

MEadvocacy was targeting NIH funding. CDC funding is not nearly as important and was never at risk of erasure till now. See Jennie Spotila's blog - http://www.occupycfs.com/2015/08/04/no-cdc-funding-for-cfs/

The CDC has done more damage than good when it comes to ME. Advocates have questioned whether it is a bad thing to loose CDC funding altogether.

MEadvocacy attended the NIH senate appropriations committee meeting this past spring. They submitted written testimony to both the senate and house appropriations committees.

MEadvocacy has a successful demonstration at the Capitol. and have two ongoing "one click" campaigns to reach every congressional representative.

So, to state that ME patients were not represented in Washington, DC, is a misstatement.
 

viggster

Senior Member
Messages
464
So, to state that ME patients were not represented in Washington, DC, is a misstatement.

I did not say that, and I don't recall anyone else saying that in this discussion. What Mr. Pak told the two patient advocates who met with him last week was that he was frustrated no one representing this illness had contacted him earlier this year as the CDC budget process was playing out. Up on Capitol Hill, it's all about reaching the right person at the right time with the right message.
 

Nielk

Senior Member
Messages
6,970
I did not say that, and I don't recall anyone else saying that in this discussion. What Mr. Pak told the two patient advocates who met with him last week was that he was frustrated no one representing this illness had contacted him earlier this year as the CDC budget process was playing out. Up on Capitol Hill, it's all about reaching the right person at the right time with the right message.

MEadvocacy's written submission to the senate appropriations committee, specifically names CDC in their title. These submissions are requested by the committees. Why request them and then the key people, whether staffers, senators or aides - not look/read them?

Mr. Pak states that he never heard of ME/CFS. If that is the case, he shirked his duties!