When we kicked off 2013 back in January, we shared that what inspires everyone at PatientsLikeMe to live better is YOU. We also renewed our promise to continue putting patients first, and a couple days ago we posted on the blog about just some of the ways the community has continued to change healthcare for good by adding their voices to real-time research and sharing personal health experiences.
In just this last year, PatientsLikeMe…
- worked with the Alkaptonuria (AKU) Society to create the first open registry for AKU patients
- met up with four members at the World Parkinson’s Conference to learn more about their experiences face to face
- collaborated with the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE) and biopharmaceutical company UCB on a study to better understand what factors improve health outcomes for veterans living with epilepsy
- showed how we can get the patient voice front and center during Sally Okun’s TEDMED talk
- partnered with Aetna to help their members improve the way they live with various health conditions
- created the world’s first open research platform with an awarded grant of $1.9 million from The Robert Wood Johnson Foundation (RWJF)
- brought the ‘patients as innovators’ idea with Rishi Bhalerao to TEDx Springfield
- worked with Boehringer Ingelheim to enhance its online patient community for people with idiopathic pulmonary fibrosis (IPF)
- unveiled a new tool to match patients with clinical trials worldwide
- hired its first CEO (Martin Coulter) since its founding in 2004
There’s even more you can check out in our newsroom too.
Also on the blog…
- PatientsLikeMe team members Dave, Sally, Kim and Jesse shared their background, and Maria talked about her journey with Crohn’s Disease
- Dr. Jerry Bagel and Dr. Steve Feldman spoke about psoriasis and treatment
- Jamie Heywood and RWJF’s Paul Tarini talked about creating an open-access platform for patients
- Michael Evers and Ken Getz spoke about partnering with patients
- Ben Heywood and several pilot researchers discussed the Open Research Exchange
And last, but not least…
the PatientsLikeMe website got a makeover in November. Haven’t seen it yet? Take a short, one-minute virtual tour with Kim Goodwin, our Vice President of User Experience.
From everyone at PatientsLikeMe, thank you and Happy New Year!
I’d like to talk with you about adding a disease category for dental mercury poisoning or amalgam illness. It afflicts people with certain common gene types (at least 20 percent of the population) that are also associated with a number of the disease categories you list. It results in a raft of chronic diseases over time, as people with methylation defects who do not clear mercury, other heavy metals and toxins well, accumulating a bioburden over time that damages intracellular transport, creating inflammation and fueling chronic diseases. This is recognized in a growing number of countries, which have banned or restricted its use with strong warnings and contraindications for certain populations, but not in the U.S. where it is an inconvenient truth to the patent-holding ADA which fights tooth and nail to defend its use.
I’ve met people all around the country, and a growing number of in community and in Massachusetts, who were diagnosed with many of the diseases you list, but have fully or largely recovered when they figured out the cause, put together a knowledgeable treatment team, and got healthy again. It is not the only cause for everyone, but the major cause for some. Mercury has synergistic effects with other heavy metals and toxins, amplifying and accelerating disease. The standard blood and urine tests only measure circulating mercury, and will be negative for some of the most poisoned people as they do not excrete it given defects in their methylation pathways, which is why doctors miss the diagnosis. There are alternate tests one can use.
So, Patients Like Me need to know their gene types, and their toxins. With this knowledge, we can unlock and reverse the keys to many chronic diseases. I would love to partner with you to advance this knowledge and get pharmaceutical companies barking up the right trees so we can all get healthy faster, quicker and at less cost and expense. They will have a huge market for products that address and reverse the problem because it is so widespread, vs. palliative Rx for symptoms and lifelong disease management for each form of inflammation which is the current, outdated paradigm.
Thanks, and Happy New Year!