I'm usually not one to get excited about
anything congress does, and tend to have a pessimistic view of government as a whole especially when it comes to diseases, but just last month congress quietly released new funding directives to the NIH, the CDC and DHHS as part of the 2018 appropriations bill. This was part of the 2016 cures act, and there was actually a Tick Borne Diseases working group and congressional proceeding and testimonies that led to these directives.
Sounds kind of dry and meaningless, but this might actually get somewhere. Its complicated legislative language, but in layman's terms directives are part of congresses power of the purse. (Always follow the money). Directives are basically congresses way of making sure they control the way government agencies use federal funding and making sure there is accountability. When they make directives, they are acknowledging there is a problem and making suggestions and recommendations to federally funded agencies to fix it.
In this recent list of directives congress specifically mentions the phrase chronic lyme disease, which is one few times there has even been official government recognition of this condition. They specifically discuss persistent Lyme and inadequate treatment, saying:
" The Committee also encourages the National Library of Medicine, in coordination with NIAID, to update its terminology in line with new research to more accurately reflect the long-term effects of chronic Lyme disease."
They also address inaccurate testing and hint at lack of accountability and transparency in regards to tick diseases within the CDC. They call into question the lack of funding for Lyme disease and ask for investigations into obstacles blocking the way for more advanced testing methods.
They even acknowledge a mental health component to Tick diseases saying "Lyme disease and other tick-borne diseases are known to cause a wide range of psychiatric manifestations" and asking the National Institues for Mental Health to "review the published literature on links between tickborne disease and psychiatirc illness."
Heres a link to a really good article that sums up the findings of the senate report:
And Here's a link to a text of the actual directives:
These are all things Lyme patients have been talking about
for years with no progress, and I think this is good news that congress is actually talking about
these issues and passing directives to address them.
The CDC itself recently released a report saying tick borne infection cases more than doubled from 2004-2016, and at the end of last year, they quietly removed the IDSA guidelines from the CDC website.
Again, I know it's congress and they are known for incompetence and move very slowly but I think these are all very positive signs and may be a reason for cautious optimism. I think it's definitely a step in the right direction that the government has at least acknowledged there may be a serious problem here.
Any thoughts? Will it be more of the same, or is this perhaps a a sign of long awaited progress in diagnosing and treating chronic Lyme in the US?
Post Edited (logmoss82) : 5/5/2018 10:53:00 AM (GMT-6)