Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by the response from the community, and we’re excited to share that one of those projects is very close to being completed.
Tam is living with multiple sclerosis (MS), and she’s been a PatientsLikeMe member for more than 4 years. After her diagnosis and experiences with her doctors not “getting” what pain means to her, Tam decided to create a new tool for anyone who might be experiencing chronic pain. Her idea is to build a measure that can help doctors better understand and communicate with patients about pain.
Watch her video above to learn about her journey and listen to her explain her inspiration behind the new ORE project.
Share this post on Twitter and help spread the word for MS and chronic pain.
- Filed Under: Multiple Sclerosis, Patient Experiences
- Tags: chronic, chronic pain, community, exchange, health, health measure, led, measure, multiple, multiple sclerosis, open, Open Research Exchange, ORE, pain, patient, patient-led, patients, Research, sclerosis, sharing, Tam
Here are some of the media items that grabbed our attention recently.
Four Things I Learned from Living with a Chronic Illness
Wise advice from a teenager who had to give up competitive gymnastics and find a new perspective on life after being diagnosed with a disease that causes chronic pain.
Access to Doctors’ Notes Aids Patients’ Treatment
A new study finds that patients better understand their condition and feel more in control when they can read their doctors’ notes (something you’re legally entitled to access).
Why We Need Ecological Medicine
Do we need exposure to a diversity of bacteria and germs for optimal immune health? A thought-provoking essay about the “germ theory,” “hygiene hypothesis” and more.
Coming Next: Using an App as Prescribed
A New York Times piece about whether healthcare apps – now regulated by the FDA – could reduce costs and change the way we monitor health.
Help with ALS via Twitter
An article about our partner ALS Untangled and how they are applying scientific rigor to the investigation of alternative therapies in ALS, having reviewed 45 to date.
Mining the Internet for Speedier Alerts on Drugs
The Wall Street Journal examines the results of a study showing that Internet search algorithms can detect adverse events for certain drugs ahead of FDA warnings.
- Filed Under: ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases, Research
- Tags: adverse events, ALS Untangled, chronic pain, doctors' notes, ecological medicine, germ theory, health apps, hygiene hypothesis, What We're Reading at PatientsLikeMe