NIH vs CDC and IDSA

I know we're not supposed to advocate, but I don't think this counts as advocacy. I don't know if this is my imagination or not, but I suspect that the NIH is more open to Lyme/cos, and chronic lyme than the CDC and IDSA are.

I look for academic articles when I do research, and I have found a number sponsored by the NIH that seem to favor Chronic Lyme and cos, and that even acknowledge the lack of research.

I have a friend who was dxed with human Parvo virus, and after doing some investigating, I found an NIH article speculating that Parvo is a Lyme co infection.

I have a friend (who has Lyme) who received free treatment for taking part in a research study done by the NIH. She has a pituitary tumor. She said the doctor who worked with her was Lyme friendly.

This is all just guesswork. My guess is that the NIH, assuming they are more open to Lyme etc., is trying to keep its reputation intact, and/or trying to keep things under wraps?

Margaret

Isn't that interesting?

One of the articles I just read mentions the "inter-cellular" activity of Lyme and Bart. I think that's how it was worded.

My guess is that the CDC/IDSA are more fearful than the NIH. My opinion is that all three agencies know to a certain extent. The CDC/IDSA are probably a bit more wimpy, and less willing to admit the lack of research. Ok, this paragraph is all speculation on my part.

I have found a lot of interesting and relevant info. in NIH articles--that part, I think is true.

Margaret

Teragram, I have the same feeling. I worked for many years with NIH, and I feel pretty secure in stating that, although NIH is a government organization, it truly exists to conduct and fund research on health issues. It also must abide by the law, but has such an interest in research that, for example, during the 1990s-2000s, it funded a great deal of research on MDMA that had to be conducted by researchers in other countries because of the DEA schedule 1 classification of the drug. If the DEA had had its way, no research would have been conducted at all, but NIH thought the drug was worth investigation and just over the past couple of years, that research has made a strong case for reclassification of the drug so that it can be used again by psychotherapists as a treatment for posttraumatic stress disorder, due to proven efficacy in a clinical setting.

I've had an extraordinarily alarming experience with the CDC, and so I am biased to think that it is a far more political organization than one that has a true interest in protecting public health interests.

Comparing information from NIH and CDC that is available online results in a pretty stark contrast: CDC states, absolutely, that there is no such thing as chronic Lyme disease, and that although a minority of patients may experience a "phenomenon" (read: not a real medical problem) they call "post-treatment Lyme disease syndrome," that Lyme is always cured permanently through a 30-day doxycycline course.

Meanwhile, you can actually find many references to the term "chronic Lyme disease" in NIH-published studies and abstracts. When I noticed that, I thought it was telling. Mind you, "chronic Lyme disease" appears primarily in non-U.S. studies and the language use could be attributed to a difference in medical terminology in various countries; however, if NIH believed that "chronic Lyme" is absolutely erroneous, it definitely would at least insert editorial comment noting that the term is not accepted within the United States or supported by research--and NIH does not do this.

CDC conducts "research" by means of self-reported surveys, such as the National Health Interview Survey, for which I was selected and which resulted in one of the most upsetting experiences of my entire life (if you have 15 minutes to kill, listen to this: https://www.youtube.com/watch?v=-9nabn9wcc4)--and the results seem highly questionable to me. For example, the NHIS regularly issues reports of telephone usage (why the CDC has any interest in this or bothers to relay this information seems beyond the scope of its mission), and it recently also released a truly baffling report that boldly states, against all previous evidence, that less than 3% of the population identifies as LGBT (see: http://www.washingtonpost.com/national/gay-rights-groups-dispute-federal-surveys-estimate-of-population/2014/07/31/6e614f62-1731-11e4-9349-84d4a85be981_story.html). This would only be of tangential interest to a true public health organization, and CDC appears to be specifically issuing pejorative findings relating to LGBT people recently--for example, that gay men like to use artificial tanning and are therefore more prone to skin cancer, and that children of gay parents are more likely to be unhappy (http://www.healio.com/dermatology/cutaneous-oncology/news/online/%7B980b8961-4bfa-4421-81e7-805f20d46de7%7D/gay-bisexual-men-more-likely-to-use-indoor-tanning-at-higher-risk-for-skin-cancer and http://thinkprogress.org/lgbt/2015/02/10/3621375/regnerus-sullins-same-sex-parenting/)

NIH would never issue, and no medical journal would publish, the results of such flawed and questionable survey practices, but CDC issues this information directly to the media. It's bizarre and irresponsible in my opinion, and that it does this supports the questionable nature of its political stance on Lyme disease.

Research often is ahead of policy, and there's no doubt (unless you ask CDC, the companies that manufacture the ELISA and Western blot tests, or medical insurers) that this is the case right now with Lyme. Real researchers tend to be open minded and ask questions for which they seek answers; CDC writes policy and enforces regulations based on a number of motivating factors, which include various political affiliations. They are two entirely different branches of government enterprise with different missions.