This morning I met with the founder of CureTogether, Alex Carmichael, for coffee at Red Rock Cafe in Mountain View, CA. CureTogether is a new patient site that helps an individual track health data pertaining to their conditions/symptoms to make informed treatment decisions and to contribute data to research.
Alexandra Carmichael, founder of CureTogether
She founded CureTogether after her own experience in self-treating chronic pain. She thought it would be a lot quicker and easier if patients could compare their symptoms and also share their treatment methods — crowdsourcing or using the collective wisdom of many patients to help inform your personal health and medical treatment decisions.
We originally met via Twitter –Alex is @accarmichael — where she regularly tweets about health and chronic illnesses. It’s exciting to hear about what people like Alex are doing in the health field and how they are looking to change the way we all view health care. Patient-centered online communities like CureTogether, MedHelp.org or PatientsLikeMe are empowering people with information, tracking tools and more resources on current treatment options and that are changing the power dynamics in the system.
Check out CureTogether and the other patient-support communities. Please post in comments your experience on those sites or other patient support communities for MS patients. The best comment determined by quality of your description and your experience (describe what you learned about yourself, your health, and what insights/information you gleaned from other members in the community) will win a sporty MRF t-shirt. Contest deadline is Thursday, August 27 5PM Pacific Time.
My name on the website is Christine1114. I was dx March 2009. I came home in a panic and search the web and came across patience like me. These people wrote about there issues and gave me the strenght. Also alot of insight of what they have done and what they wont due. I learn that there are different kinds of medicine and I dont have to settle for something I cant handle. I took some advise and got a third opinion and found certain things were not being done because of insurance issue, when all along I was covered by my insurance. Patience like Me gave me a voice. Wether I am just having a bad and I need to talk or to get a opinion on what ever subject it is. God Bless this website they are all there to put a good word in.
Comment by carol ortiz — August 25, 2009 @ 11:53 am
I have learned that no matter what happens , I have to keep moving. Time isn’t going to wait on me. I have friends and family that count on me being there walking or rolling. Do whatever it takes to keep moving. I have also learned to spread the positive attitude where I can. There are a few angry bloggers and post writers out there. They also make me who I am. We need a negative side and a positive side just like a battery to run. I have chosen to be a positive side. I still make music and write books. I just do it a little differently now. I am still moving!
Comment by chris cox — August 25, 2009 @ 1:19 pm
There is an active community at MedHelp that focuses on MS and it is open to anyone with an interest in this MiSerable disease . It always astounds me what a supportive group we are; even though we have never met in person we know each other well and communicate about our disease in a most personal way. We are walking this journey together.
The most notable benefit of online communities is the personal empowerment it gives. Gone are the days when the medical system can expect patients to sit by passively and wait for answers to be shared – being a part of an online community changes the power dynamics of the doctor/patient relationship. This empowerment comes in many ways at MedHelp and other online sites.
I often write a phrase we are told as school children – knowledge is power. The resources available to us through the WWW puts knowledge at our fingertips. We no longer have to venture out to the doctor or the library to gather information – with the flip of a switch, when we power up our computer the answers are immediate. These online communities have put us back in the classroom for powerful peer tutoring sessions, and all the information is readily available.
Then there is the intangible power that our community nurtures too – everyone is encouraged to be confident in their quest for answers. We want to understand what is lurking when our bodies begin to malfunction at so many different levels. It sometimes takes that extra nudge to call a doctor, gather test results, or seek a second or third opinion; our MedHelp MS community is more than willing to hold us accountable for taking charge of our own health care.
There are many wonderful places on the web where MS patients and their caregivers meet and share with others in similar situations. I am of course partial to our group at medhelp.org and would invite anyone who reads this to stop by and check us out.
Regardless of where you gather, remember there is power in numbers – being online with my community helps me to remember I am not alone. We’re in this together.
Be well,
L
Comment by Laura — August 25, 2009 @ 5:35 pm
As someone who has had MS since I was sixteen, was diagnosed at thirty two and had my latest attack in 1997, I am unfortunately too aware of how badly it can affect people and how isolated we MSers can actually feel, being only one in twelve hundred of the population.
Having absolutely no media presence, MS languishes in obscurity, and MSers languish in denial until the diagnosis becomes inevitable and acceptance becomes unavoidable.
I am an MSer who’s into media and new media; podcasting about my experience with MS, [on iTunes @ http://phobos.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?id=120932170 ]
I am also doing a couple of shows, one of which is called “The Disability Show”, for WSPC, the web-streaming radio station of St. Peter’s College here in Jersey City. [ http://www,spc.edu/wspc/ ]
I am interning for Mr Douglas Rushkoff on the “Community Desk” of “The Media Squat” on WFMU at 91.1 FM also here in Jersey City [ http://www.wfmu.org ]
And I just wrote a book about some of my my experiences making MSBPodcast, [ http://www.lulu.com/category/books/biographies_memoirs/2?fSearchFamily=0&fSearch=podcasting&fSubmitSearch=Go&showingSubPanels=&fSort=relevance_desc ]
I think I can speak about the need for role models to show the newly diagnosed that they are not consigned to leading empty lives of obscurity as great as that which shrouds MS.
I can offer my life as an example that might illustrate that point.
Comment by Charles-A Rovira — August 25, 2009 @ 7:23 pm
[...] link is being shared on Twitter right now. @mrf_justine, an influential author, said @accarmichael [...]
Pingback by Twitter Trackbacks for CureTogether: Patients working together | The Myelin Repair Foundation Blog [myelinrepair.org] on Topsy.com — August 26, 2009 @ 2:58 am
When MS was first mentioned to me, I started to research it on the internet. I found PLM in early 2008. On PLM I learned what to ask my Neuro, whom I discovered, wasn’t very knowledgable about MS after all.
He didn’t want to dx me, said I was too *old* for MS. When I asked him if he would do an MRI of my neck and back, since my symptoms suggested that I had lesions there, (This I learned at PLM)and he said no, it wasn’t necesarry.
Meanwhile I demanded to go on something,as the info I was reading on PLM said it was necesarry to be on a DMD. He told me to choose….. (yes I know…) so I chose Copaxone.
My PCP was sure it was MS and perscribed me baclofen for the muscle spasms in my legs. (This too I learned from PLM.)
Because of PLM I found a MS Neurologist, and he did a complete work up on me, MRI of my head, neck and spine. And guess what……lesions! 8 to be exact on my spine and neck. So I started on Tysabri in Jan. 09, and it has been a blessing in my life.
I function at a high level, I have been able to keep my job. My outlook on life with MS is alot better now, and I actually have hope for the future.
I can’t imagine where I would be, how much different my dx, treatment, and most important of all, my disability would be today, and in the future without the knowledge that I have gained from being a member of PLM.
Oh, and yes, I DO have MS……
Comment by Jan Christensen — August 26, 2009 @ 9:16 am
I have been a member of the MedHelp MS Forum since I started the diagnosis process. I had never been to a Neurologist and it was great to read other’s experiences. I was scared to death of this thing called MS I knew nothing about. I could not have done the LP without the Cheerleading Squad. I made a friend who was diagnosed the same week and went on Copaxone at the same time. Now I like giving encouragement to others. I can have a bad day but sharing my experience, strength, and hope with another gives me back so much.
Comment by Alex — August 26, 2009 @ 1:32 pm
I appreciate everyones participation and community focus. I think we “patients and parents of those impacted”, should band together and demand a better model for research in orderto bring drugs to market sooner, better research with a sense of urgency,and better collaberation regarding research. Over a decade has passed with billions of dollars spent on new therapies and we still have to give injections. We need to develop a global network to put pressure on those who have lost the sense of urgency associated with this disease. We can’t wait another decade or spend additional billions to be in the same place we began; no cure, same injections, etc… Please join me
Comment by curesoon — August 26, 2009 @ 4:54 pm
After looking at and joining several other MS support forums I was totally psyched when I came across Patients Like ME At Plm there is a group of well informed people with a common goal. We all want the best treatments possible and that information is shared freely on PLM. Discussions of accepted and experimental thearapies are the norm with PLM
Another imprtant advantage of PLM is the ability of users to post links and cut and paste information that is relevent, other sites forbid the practice.
Plm has become my primary resource for an inroad into the MS community. My membership and participation is very valuable.
Comment by David — August 27, 2009 @ 5:35 am
My experience since joining the PLM family in May has been nothing but AWESOME!!!! Everyone who is a member here and the staff of PLM have been very helpful and very supportive in a time like this for most of us. I have blogged about my experiences and symptoms I have been having and the family is right there to have an ear open to listen and explain some of their experiences also. In them doing this, I have learned alot of information about MS and to have someone to talk to who understands where I am coming from is great. I have all my ducks together when going to see the Neurologist so I understand what he is saying and that he also understands that I have done my homework also. The PLM family has helped me alot on what MS is and different ways to deal with it. I do think the information given should come from actual people who have this disease, weather they have had it for 40 years or 4 weeks, that is who I love to talk with and I also brag to friends and family on how I found the PLM family one night just surfing the internet and joined right then. THANKS FOR THE PLM FAMILY!!!!
Theresa Peterson
1 person marked this post as helpful.
Comment by Theresa Petrson — August 28, 2009 @ 8:29 pm
[...] Theresa Petrson My experience since joining the PLM… Popular Articles [...]
Pingback by And the winner is… | The Myelin Repair Foundation Blog — August 31, 2009 @ 9:10 am
I know it is past the deadline for the contest, but this isn’t for the contest.
Even before getting the final diagnosis, I participated on an MS forum which no longer exists. I learned a great deal about MS from those who live it.
Since blogging, I have met a wonderful community of generous persons who share their thoughts and bits of their lives which anybody and everybody on the internet who stumbles across their way. Through the MS Blogging Community, I have developed true friendships and support system.
Growing from my blogging experience, I have been writing and leading an MS community for HealthCentral. I try to bring reliable information to the group through my articles (or Shareposts) as do others on the site. Within the comments section, conversation thrives and support is freely given. Even in the Q&A section, the willingness to give information and support to others is evidence. We’re a small community, but big on sharing.
As a self-proclaimed patient advocate, I see my role within a number of patient communities as one which does the following –
Educate, Encourage, Empower
That’s my experience with patient community.
Comment by Lisa Emrich — August 31, 2009 @ 10:18 am
Lisa,
Thanks so much for sharing your experience as an MS community leader. You are an important member in this tribe, helping people out, sharing your stories, pointing us to resources and giving encouragement all the time.
Folks if you haven’t checked out Lisa’s blogs please do so at HealthCentral and also at http://carnivalofmsbloggers.blogspot.com/
Justine
Comment by Justine Lam — August 31, 2009 @ 12:07 pm
I was driving home about a week ago and had a panic attack, called 911 and was driven to the er. It was the first time that I had one and really knew nothing about them
previously so was completely freaking out. Ever since I have still felt as if I wasn’t breathing correctly (like my throat is closed up), and have had pains and tightness in
my chest. I was just wondering if this was normal because I have talked to a few doctors and they said I was fine, I read up a little about panic attacks symptoms
Any ideas?
Comment by Ideobbyteatry — September 7, 2009 @ 5:46 pm