You’ve all heard the phrase “use it or lose it” before. But should it be applied to patients with chronic, debilitating illnesses? That’s an ongoing debate in the PatientsLikeMe forums. Take for example this discussion of cognitive difficulties in our Multiple Sclerosis Forum. On the one hand, there’s the argument that brain exercises such as… Continue reading Use It or Lose It?
Category: Fibromyalgia
Not Recognizing the “New Me”
For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself. According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help. Have you found yourself feeling resentful when family,… Continue reading Not Recognizing the “New Me”
Honoring Family Caregivers Everywhere
Is there a caregiver in your family? For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness? November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the… Continue reading Honoring Family Caregivers Everywhere
What’s Positive About Disease?
It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness. In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we… Continue reading What’s Positive About Disease?
Searching for a Diagnosis: An Interview with Lyme Disease Patient Pampe
Getting the right diagnosis can take many years, or in the case of PatientsLikeMe patient Pampe, many decades. After experiencing her first Lyme disease symptom in 1973, it was not until 2012 that she finally received a diagnosis that explained her many symptoms. Discover what hindered the process and what’s she learned along the way… Continue reading Searching for a Diagnosis: An Interview with Lyme Disease Patient Pampe
What We’re Reading at PatientsLikeMe
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… Continue reading What We’re Reading at PatientsLikeMe
PatientsLikeMe Featured on Bloomberg TV
On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as company. Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease. Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage… Continue reading PatientsLikeMe Featured on Bloomberg TV
The Joy of Being Helpful
Many patients with life-changing conditions report feelings of grief and guilt about no longer being able to do many of the things they did in the past. As a recent discussion in our forum revealed, however, patients are finding ways to reset their perspective and boost their self-esteem by focusing on what they are still… Continue reading The Joy of Being Helpful
Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King
You may recall that in July we shared a video about Doctors 2.0 and You, a conference focused on how physicians are using web 2.0 technology. Today we’d like to present a real-life example of this concept: Dr. Jim King, MSc, MD, FRCPC. A pediatrician at the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa,… Continue reading Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King
The Importance of Open Access: An Interview with Patient Advocate Graham Steel
A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe. Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific… Continue reading The Importance of Open Access: An Interview with Patient Advocate Graham Steel