LYMEPOLICYWONK: My Speech at Stanford MedX: Patient Powered Research and Lyme
Next week, I will be honored to speak at the Stanford MedX conference on Patient Powered Research and Big Data. You can watch it streaming live if you tune in at around 10:30 am PST on Saturday the 26th. Patient powered research and big data are very important for patients with Lyme disease. Patient powered research is research that is conceived by patients, run by patients, and designed to improve patients lives. This type of research has only recently become possible with the rise of big data and the ability of patients to pool their health care data to determine which treatments are most effective and why treatments work for some patients but not others. It is part of the democratization of science. Sign up to register for the streaming live presentation. Follow my tweets using #MedXlyme.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk.
I am honored to have you leading my fight.
It is ashame that patients themselves seem to be the only ones concerned & fighting for our lives.
Thank you.
CONGRATS LORRAINE! will look forward to hearing this live hopefully.
if not, someone will taping this to RE-AIR later for those still working, etc. i hope.
hugs, bettyg, iowa activist
It should be recorded and put on You Tube where everyone can see it at any time.
As one who has Lyme and has done a huge amount of researching papers created over the last 20 years, I’m going to share with everyone that research directions need to focus on biofilm cysts and the way to break them up as opposed to their being allowed to just opening up once they can no longer hold the quantity of new spirochetes replicated in the cysts and beginning the whole process all over again. Until that is done individuals will continue to suffer from chronic Lyme disease with many dying from heart failure, lung issues, and loss of brain function. It has been discovered that 100% of the brains of those dying supposedly from Alzheimer’s contained the same bacteria we refer to as Lyme disease.
Really hoping we can see a video of your talk posted online. How exciting. And thank you so much for all you do and have done for bona fide science of this disease.
Considering IV ozone, hyperbaric treatments, stem cell now for Lyme since 1990 with last 2 years of IV and oral antibiotics. Pronounced fatigue, muscle spasms along the spine, and mental fogginess remain, although the migraines and PNP are reduced by abx. Following clean diet, but am too fatigued and discouraged to exercise regularly. RN with BSN from UP too compromised to work but maintain credentials with hope of great improvement someday. On Dr. Rawls supplements currently. LDN and LD Prozac untolerable with increased hand tremors and dizziness. Any suggestions about the above therapies would be much appreciated.
Jan Kane