CDC funding (and other ramblings)

[Andrew]

If I had it to do all over again, I would not have told any subsequent doctors about my CFS diagnosis. It is the kiss of death. But at the time I assumed the stigma against it had changed. I thought that until I started reading the CDC website and noticed they were selectively ignoring research outcomes and posting their personal hunches as if they were science-based.


I testified to the CFSAC about this. Nobody checked to see if what I said was true. Years later the CFSAC actually did review the website (at the urging of one of their members) and concluded that the CDC was cherry-picking studies and presenting bias as fact. IOW, they drew the same basic conclusion I did. And I was not the only patient who had been complaining about CDC coverage.

In all fairness, many CFSAC members have tried to move the CDC. And they did respond by finally doing the review. And I don't mean to seem ungrateful but what good does that do me? I still go to the doctor and get treated dismissively. You see, the CDC will make no effort to undo the harm they have caused by refuting the misunderstanding they helped to create. They are only willing to cause less harm.

So there is no reason for doctors or anyone else who was influenced by them to think what they presented in the past was wrong. Not to mention all the other institutional websites that parroted the CDC are still there. And honestly, I look the possibility of congress cutting funding to CDC for ME/CFS and I'm not scared. I'm glad. The result will be less harm to patients. You think they have changed? That's what people thought after the CDC got busted by Congress and Reeves was put in charge. Remember Reeves?

Remember the information about how all we need is exercise and CBT. Remember that crap? You think Unger is different? She is not. She defended all that crap. She said it was simply a reflection of CDC research, and there was no cherry picking. I'd like her to produce the CDC study on exercise, and the CDC study on CBT, because I sure have not been able to find them.

 

[5150]

With an upcoming budget for CFS at ZERO Dollars, they think this is the answer to their prayers.
Sure, blame it on Economics.

I'm transferring my hopes into the NIH budget... yes, I am being "herded".
Isn't that what They Want?

 

[*GG*]

If I had it to do all over again, I would not have told any subsequent doctors about my CFS diagnosis. It is the kiss of death. But at the time I assumed the stigma against it had changed. I thought that until I started reading the CDC website and noticed they were selectively ignoring research outcomes and posting their personal hunches as if they were science-based. I testified to the CFSAC about this.

Nobody checked to see if what I said was true. Years later the CFSAC actually did review the website (at the urging of one of their members) and concluded that the CDC was cherry picking studies and presenting bias as fact. IOW, they drew the same basic conclusion I did. And I was not the only patient who had been complaining about CDC coverage.

In all fairness, many CFSAC members have tried to move the CDC. And they did respond by finally doing the review. And I don't mean to seem ungrateful but what good does that do me? I still go to the doctor and get treated dismissively. You see, the CDC will make no effort to undo the harm they have caused, but refuting the misunderstanding they helped to create. They are only willing to cause less harm.

So there is no reason for doctors or anyone else who was influenced by them to think what they presented in the past was wrong. Not to mention all the other institutional websites that parroted the CDC are still there. And honestly, I look the possibility of congress cutting funding to CDC for ME/CFS and I'm not scared. I'm glad. The result will be less harm to patients. You think they have changed? That's what people thought after the CDC got busted by Congress and Reeves was put in charge. Remember Reeves?

Remember the information about how all we need is exercise and CBT. Remember that crap? You think Unger is different? She is not. She defended all that crap. She said it was simply a reflection of CDC research, and there was no cherry picking. I'd like her to produce the CDC study on exercise, and the CDC study on CBT, because I sure have not been able to find them.

Just breaking this up to make it easier to read.

GG

 

[Andrew]

I cannot think of a single positive thing the CDC has done for us. But I can think of negative things they have done to us. I also remember how advocates called to Unger's attention that the stress test should be done two days in a row. This was before she even began their current project. And she declined. She is doing a one day test. And that is what will be published. It's like taking a biopsy from the wrong place and saying it's good enough.

 

[Nielk]

I agree with you, Andrew. If I would have the strength, I would join you full heartedly in your rant.

For now, I just want to say that I for one have been irreparably harmed by the CDC's actions.

My GP followed CDC's recommendations for treating the disease. It sent me spiraling downward and caused me to fluctuate between moderate and severe.

I will never forgive them for that because evidence was there of the harm yet, they refused to change their website.

 

[Sean]

I also remember how advocates called to Unger's attention that the stress test should be done two days in a row. This was before she even began their current project. And she declined. She is doing a one day test.

Yeah, not happy about that.

 

[Andrew]

My initial reaction when I heard the CDC money was being cut was "oh no, they are taking our money away." I think that's a natural reaction. And maybe this is because deep down I keep hoping the CDC will do the right thing. But they never have. And they have done us a lot of harm.

I think our best bet for funding is NIH (because they have actually funded at least some good things). I also think the CFSAC helps because they are the only national focal point where patients can rally, and they have done some significant good things, like recommend that the toolkit be removed. Having recommendations like that sitting on the HHS website makes it much easier for advocates to convince people that something is wrong.