We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. For Craig (woofhound), who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes,… Continue reading Patients as Partners: An open letter from Craig to the “normals”
Tag: Fibromyalgia
Meet Craig from the PatientsLikeMe Team of Advisors
We recently sat down with Craig, one of your 2015-2016 PatientsLikeMe Team of Advisors. Craig is living with fibromyalgia and severe degenerative disc disease, the result of a serious car accident in 1978. Craig is active on PatientsLikeMe and other online communities, where he adds his voice to discussions about chronic pain, healthy living and… Continue reading Meet Craig from the PatientsLikeMe Team of Advisors
PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships
Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 2015–2016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing… Continue reading PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships
Food for thought: August (diet) edition
Many mothers have told their children “you are what you eat,” but some PatientsLikeMe members have taken that idea one step further and are using their diets to try and manage the symptoms of their conditions. People have been sharing about everything from gluten-free to vegan diets – check out what some people said in… Continue reading Food for thought: August (diet) edition
Food for Thought: September weather and autumn recipes
Around the PatientsLikeMe office in Boston, the leaves are beginning to turn red, yellow, orange and gold, and everyone is starting to bundle up as the weather gets colder. In turn, PatientsLikeMe members have been sharing their favorite fall recipes and some thoughts about how the weather impacts the conditions they live with. Here’s what… Continue reading Food for Thought: September weather and autumn recipes
“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
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
Food for thought: May edition
Just last month, we shared about some of our community members’ favorite foods, and about how what they choose to eat can impact the conditions they live with every day. We heard from the fibromyalgia, type 2 diabetes and multiple sclerosis communities – and to keep the series going, we’ve got three new hot, or… Continue reading Food for thought: May edition
Food for Thought: Recipes, Diets and Tips
What’s for dinner? Does this phrase haunt you the same way it does us? It is hard to come up with something to eat for every meal each day, especially if you have dietary restrictions due to your condition. If you feel like you are stuck in a meal rut, the PatientsLikeMe community is here… Continue reading Food for Thought: Recipes, Diets and Tips
PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome
PatientsLikeMe made the following announcement last night at the TEDMED conference. For more on Jamie Heywood’s presentation, check out what people are saying on Twitter. – – – – – – – PATIENTSLIKEME ADDS ONLINE COMMUNITY FOR PEOPLE WITH CHRONIC FATIGUE SYNDROMEResearchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus Cambridge, MA–October… Continue reading PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome