LymeNet Flash: Update of RFK’s Lyme Initiative After One Year

This is topic Update of RFK’s Lyme Initiative After One Year in forum General Support at LymeNet Flash.

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Posted by Bartenderbonnie (Member # 49177) on :

Representative John James (R MI) questioned RFK jr recently @ a congressional hearing about his Lyme Initiative created one year ago.

https://www.facebook.com/RepJohnJames/videos/1667937711011241/

There has been movement towards finally addressing Lyme patients cries albeit slowly.

The Cohen Foundation was responsible for organizing the last year’s Lyme roundtable and funding research. Set up by the billionaire owner of the New York Mets, the Cohen Foundation has donated $1.3 billion to regional causes since 2001 and recently expanded its headquarters on the Stamford-Greenwich border.

HHS will renew its partnership with the Cohen Foundation on the Lyme Innovation Accelerator program to advance prevention and care for the disease, Kennedy said at the roundtable.

The federal government will also set up "centers of excellence" for Lyme around the country to identify the best tests and treatments for the disease, Kennedy said. Patients will also be directed to doctors with successful track records for treating Lyme, he said.

Lyme Disease funding remains low compared to other infectious diseases. Robert F. Kennedy Jr. has committed to advocating for funding and support for Lyme disease research and treatment. However, specific dollar amounts that he has allocated for these efforts are not detailed in the available information!

Here is the new HHS Lyme disease page.
https://www.hhs.gov/lyme/index.html

Here is the New CDC Clinical Care and Treat of Neurological Lyme Disease.
https://www.cdc.gov/lyme/hcp/clinical-care/neurologic-lyme-disease.html

Here is Dr Oz’s CMC Medicare Chronic Care Management of Complex Conditions.
https://www.cms.gov/medicare/payment/fee-schedules/physician-fee-schedule/chronic-care-management-complex-conditions

Here is HHS government Invisible Illness; Lyme Disease
https://www.hhs.gov/lyme/index.html

Updates to the website are a Clinician Locator [Coming soon in 2026]
The Clinician locator will provide a national provider directory and information on doctors who are treating Lyme disease, IACCIs, and invisible illnesses.

And a Patient Resources page [Coming soon in 2026]

Upon my review of these new websites, the same old problems exist. Under treatments, the recommended protocol for neurological Lyme is 10-14 of antibiotics and you’re cured.

Also there’s lots of published research with the same deniers from the IDSA.

Please look over all the website’s information. There are case reports from Lyme patients. Lots of information on all kinds of infections. I found it a valuable resource and hope they get everything up and running.

Yet I don’t see how this helps us unless the IDSA changes their dug in, decades old, “There’s no such thing as Chronic Lyme!”

Posted by hiker53 (Member # 6046) on :

Thanks, Bonnie.

I have been following this and am disappointed there has not been much progress.

Plus funding for many Lyme studies were cut during the DOGE massacre of funds all over the government.