Patients To Share Their Experiences, Help Researchers Better Characterize Disease And Develop Treatment Strategies CAMBRIDGE, Mass.—August 5, 2014—PatientsLikeMe and Actelion Ltd. (SIX: ATLN) are partnering in a research initiative to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL. The collaboration will leverage PatientsLikeMe’s Open Research Exchange (ORE), an… Continue reading PatientsLikeMe and Actelion to develop new patient-reported measure for mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL)
Category: Patient Experiences
“In my own words” – PatientsLikeMe member Tam writes about (your) life with MS
If you were living with multiple sclerosis (MS) and someone said to you, “Well I get tired too, but I don’t go lay down in bed all day,” how would you respond? Invisible symptoms like pain and fatigue are hard to describe to someone who doesn’t get it or isn’t living with MS. But to… Continue reading “In my own words” – PatientsLikeMe member Tam writes about (your) life with MS
“In my own words” – PatientsLikeMe member Steve writes about his journey with ALS
For those of you who don’t know Steve, you should! For years he worked as a successful landscape architect designing urban public spaces. In 2006, he was overlooking the design of the historic Boston Common when he was diagnosed with ALS. Steve retired from that career path and quickly started another – creating the Steve… Continue reading “In my own words” – PatientsLikeMe member Steve writes about his journey with ALS
Food for thought: July (chocolate) edition
Calling all dark chocolate lovers! Did you know there could be a benefit to eating it besides tantalizing our taste buds? A new study started to get some buzz in the MS community forum when a member posted about how it claimed those who regularly consume dark chocolate may enjoy improved walking ability. Here’s what… Continue reading Food for thought: July (chocolate) edition
“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 3
Over the past few months, Eleanor (redblack) has been sharing about her bipolar II on the blog, and today, we’re posting the final part of her series (thank you Eleanor for being so open and taking the time to share with everyone)! Eleanor talks about her relationship with her psychiatrist Jon and how they recently… Continue reading “In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 3
Food for thought: June edition
For the past couple months, we’ve been sharing about different members’ favorite foods and recipes, and we’re keeping it going with multiple sclerosis members discussing the pros and cons of smoothies, ALS patients talking about getting sleepy after steak, and the fibromyalgia community sharing about cutting foods out of their diets. MS forum thread: Nutrition… Continue reading Food for thought: June edition
If you could share one thing… -Steven’s inspiring answer
PatientsLikeMe ALS member Steven (sheronemus) was diagnosed with ALS back in 2005, and we recently had the chance to ask a few questions about his experiences. Steven spoke about his initial anger and disbelief, the clarity and focus he developed afterwards and how technology helps him participate in many events he didn’t expect to witness.… Continue reading If you could share one thing… -Steven’s inspiring answer
“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 2
Back in May, Eleanor (redblack) wrote about her some of her experiences with bipolar II to help spread the word for Mental Health Awareness Month. She’s continuing this month by sharing about the personal support system she’s developed through a wonderful relationship with her husband Jim, her special bond with a particular mood community member… Continue reading “In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 2
One Mind and PatientsLikeMe join forces to help people with post-traumatic stress and traumatic brain injury
Collaboration Will Uncover Real-World Experiences, Generate Patient Data That Improves Daily Living and Overall Understanding of Conditions SEATTLE, WA—June 12, 2014—One Mind and PatientsLikeMe announced a new multi-year collaboration to help the millions of people worldwide who are experiencing post-traumatic stress (PTS), traumatic brain injury (TBI), or both. The two organizations will work together to… Continue reading One Mind and PatientsLikeMe join forces to help people with post-traumatic stress and traumatic brain injury
“Sharing has given me support” – PatientsLikeMe member Debbie opens up about her MS
As PatientsLikeMe member Debbie (chilli123) says, it’s a very private decision whether or not to discuss MS openly. But as you’ll read, she’s doing more than just speaking about her MS – Debbie is spending time with others so they can better understand what life with a chronic condition is like. Debbie also talked about… Continue reading “Sharing has given me support” – PatientsLikeMe member Debbie opens up about her MS