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Congress proposes to slash CDC's ME/CFS budget to zero

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The CDC has almost totally failed us. Almost. The only possible mitigation is the multisite study, and the clinics in the study are not CDC owned and operated.

Selling the CDC is like selling a left handed old fashioned screwdriver.

The NIH has also failed us.

The FDA at least gave a fresh look at the issues, and produced an interesting report.

The IOM produced our first evidence based review, though those who are familiar with my writing will know that it was premature and inappropriate. In five years, as they suggest, it might be a better time for such a review. This is not about the team being incompetent or biased, but about the entire process forced on them which is inappropriate to underfunded and under-researched areas where there are strong influences biasing the science.

The P2P ... what do I even say about the P2P. They got some of it right, came to obvious conclusions, but never had the mandate, time or resources to look at the important questions.

Let it not be forgotten that most governments around the world have failed us. The is not a USA-centric issue. The rest of the world should be doing much more collectively than the US, but with a few exceptions the world is mostly silent.

None of this is relevant to the CDC funding axing proposal. The real fallout will be political. Even if it goes through we will have mitigated that fallout by showing that we are concerned.

In fact, dare I suggest it, the best possible outcome might be a major advocacy campaign, with the multisite going independent or with NIH oversight, more NIH funding, and the CDC dropping CFS completely after a permanent loss of funding.
 

halcyon

Senior Member
Messages
2,482
In fact, dare I suggest it, the best possible outcome might be a major advocacy campaign, with the multisite going independent or with NIH oversight, more NIH funding, and the CDC dropping CFS completely after a permanent loss of funding.
I agree with this. Yes, we could lose funding for the CDC CFS program but we could be on the cusp of gaining increased funding in the NIH, a place where it could be put to better use in my opinion. Looking at the research that the CDC has done throughout the years, it has all failed to translate into anything that can help us as patients. Instead we've seen excellent research from people like Montoya, Chia, Lerner, Lipkin/Hornig, Fluge/Mella, etc. Research that can actually translate into helpful information and even treatment for patients. I think that the CDC's role in researching this disease should be minor, epidemiology and medical education, their stated role as an organization. They shouldn't be the gatekeepers of this disease, they should take a backseat and take their cues from the major researchers of the disease. The problem is that we don't have major researchers because we don't have the NIH funding for it. This gets back to the main point. We should continue to focus most of our advocacy efforts on HHS/NIH. We need a strong policy put in place at that level to dedicate the government to tackling this disease.
 
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WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I think that the CDC's role in researching this disease should be minor, epidemiology and medical education, their stated role as an organization.
I never understood why, once it was clear we were not likely a Koch's Postulates disease, we weren't immediately moved out of CDC into some branch of DHHS that usually deals with chronic diseases not caused by a single identifiable infection.
 
Messages
59
Location
Maine
Response today to my query whether Mass CFIDS Association will post updates on their advocacy progress, including what they find re: how and why the decision was made, as well as of course if funding will be restored there or moved elsewhere:
"Yes, that’s a very good idea. I will probably write an advocacy update in early September, after the CFSAC meeting (Tuesday and Wednesday, be sure to watch!) and after the meetings with Sen. Warren’s staff (next Thursday) and the Appropriations staffer (Aug. 27th). I will try to find out why the senate cut CDC funding for CFS, but we’ll have to follow the legislative process to see what the final decision is on the CDC funding. Maybe the staffer can let us know the schedule for the bill."​
 
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jimells

Senior Member
Messages
2,009
Location
northern Maine
I never understood why, once it was clear we were not likely a Koch's Postulates disease, we weren't immediately moved out of CDC into some branch of DHHS that usually deals with chronic diseases not caused by a single identifiable infection.

Yet another reason for a real investigation into the links between CDC, UK psychobabblers, and the disability insurance industry, which needed somebody to turn the illness into a mental health issue and thereby limit benefits to patients.
 

ballard

Senior Member
Messages
152
Waiting For Superman

Superman4.jpg
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)