I think normally people are afraid to doubt the experts. After all, if you can’t trust them, who can you trust? You start to doubt everything, and a lot of people are just too afraid to lose that sense of safety.
So when you are faced with looking at something that creates doubt, many do not want to hear it. They would rather think–oh, that person saying that is nuts, crazy, a loon.
Sometimes it is easier to believe that. But in the long run, it is not the best course of action. The best thing to do is get all the information you can from different sources and then make up your own mind, using your critical thinking skills. Then argue with yourself.
I didn’t plan to not trust the CDC at any point in my life. There were pieces of a puzzle that I just couldn’t ignore anymore.
One of the biggest issues in diagnosing and treating Lyme disease (and other tick-borne diseases) is the lack of a good diagnostic test. No one disagrees with this.
However, the CDC does say this on its website about Lyme testing. (Note: They do not lump all tick-borne diseases into “Lyme” here).
“The two steps of Lyme disease testing are designed to be done together. CDC does not recommend skipping the first test and just doing the Western blot. Doing so will increase the frequency of false positive results and may lead to misdiagnosis and improper treatment.”
Grammar nazi note: “western blot” is not supposed to be capitalized.
The CDC surveillance system (which is not supposed to be used for diagnosis and treatment as stated by the CDC itself) was changed by the Council of State and Territorial Epidemiologists to allow stand-alone western blots. The CDC still endorses the 2-tiered system though.
So all great and whatever for the surveillance system. Why haven’t they come out and stated how to diagnose Lyme (and/or other tick-borne illnesses) in diagnosis and treatment? They have stated they endorse the IDSA guidelines, but we all know how well that is working for them. Their revised average cases in the US a year missed 90% of true cases. They guess 30,000 a year. When they went over their data, they revised it to 300,000. So 270,000 cases were missed. This is a very conservative estimate by the way. But let’s stick with it.
ILADS recently came out with new diagnosis and treatment guideline recommendations for Lyme/tick-borne diseases. Why hasn’t the CDC read over those and decided to endorse them since they miss fewer cases, give providers and patients more options, and allow for clinical judgment instead of lazily relying on lab tests?
The CDC also says this about lab tests: “Before CDC will recommend new tests, their performance must be demonstrated to be equal to or better than the results of the existing procedure, and they must be FDA approved.”
However, FDA approval is not necessary in private lab tests since the CLIA oversees those. So a great, wonderful, new test that could help many, MANY patients would not be good enough, and the CDC would not recommend it just because it is not FDA approved? Why? They are fine and dandy with lab tests that are FDA approved but only work for 10% of patients (or in other research 50%-ish). You would think they would accept anything better than that. I know I would.
So when the CDC is telling me things about ebola, I am left wondering if they are being 100% honest or if they really care about the people they are supposed to be protecting. And if they do care, why such a terrible stance on Lyme? It may not be as “serious” as ebola, but it certainly is not benign. It kills. It tears apart families. It tortures its patients physically and emotionally.
And unfortunately, after you learn about how the CDC and IDSA have handled the Lyme epidemic, it takes my trust away, erasing my sense of safety regarding all other “agencies.”
So while I am not stock-piling water and supplies thinking there is going to be a huge outbreak of ebola, I also am not going to believe 100% of what is coming out of the talking heads of agencies I see on TV.
I think that is a well-informed, non-panic stance that many people should learn to embrace.
One last part of the problem I think is going on, although I could be wrong: The CDC does not think people can handle the truth. They think it is best to say not to panic and then proceed to be very vague. This causes much more panic than the truth would.
Even if people don’t out-and-out realize it or are not able to articulate it, we know no one can know absolutely everything about everything, especially a living thing that mutates. When the CDC (or agency like them) acts like they have everything under control and they know 100% what is happening and what will happen, that makes us suspicious. Either they are so naive to think they know everything, or they do not know everything and are hiding something.
The type of person/agency I would trust quite a bit more: One that is honest and realizes they can’t possibly know everything about everything, tells me this, and then keeps me informed about what they are finding out.
Thus, the FINAL thing that makes me not trust anything coming out of the CDC: Why don’t they see that simple answer? Heck, even I can see that is necessary with an epidemic. So are they
1. Too naive?
2. Hiding something?
3. Hiding something AND not caring that I know they are hiding something?
I think that final one scares me most of all.