PatientsLikeMe has been on a roll, inking deals with biopharma giants such as AstraZeneca ($AZN), Genentech and Biogen ($BIIB) to provide its patient-reported data for the companies’ R&D initiatives. Now the company is shifting gears, planning to work with the FDA to see how its patient reports could improve drug safety.
PatientsLikeMe draws its data from a network of 350,000 patients, collecting information in real time about issues ranging from drug tolerance and adherence to quality of life…
This section is a list of different treatments used for pain, with Tramadol being listed as the most frequently used.
Treatments taken by people with Chronic Pain Syndrome
This shows hydrocodone as the most frequent treatment being used.
The fibro community on PatientsLikeMe is one of the largest on the site, and it’s growing by the day – this time last year, there were about 30,000 in the community, and now, it’s more than 42,000 strong! They’re donating their data through personalized health profiles and sharing their stories in the forum to help others with fibromyalgia…
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…
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.
In the video, Tam describes her first experience with the 1-10 rating scale for pain. When asked about the worst pain she could imagine (that being a 10), she used being crucified as an example. So then the doctor said that a 10 would be like having a toothache so bad you feel like you have to call the dentist and get seen that day.
Well, that wouldn’t describe my level 10 pain. If I used that example, my pain levels would be off the chart.
There appears to be a small group of chronic pain patients using this website. I’m not sure what the benefit would be for me, as a 30-year intractable pain patient, to join. But it may help other pain patients, especially those who suffer from fibro.
There’s also a section to search for clinical trials, including by location: