What real patients are saying about PatientsLikeMe...
Just talking makes it a lot better
It just seems like talking about it (my disease) makes it a lot better. It’s very helpful when you talk to somebody about it. I feel like you have to talk to somebody else that’s been through something similar.
I found others with the same challenges
What I found on PatientsLikeMe were others who were also suffering from MDD and were experiencing the same symptoms and challenges as myself. I felt better just by being able to express myself and even more so when others with MDD began reaching out to me with advice and encouragement. I can really say that this made all the difference to me in the world.
I feel I still have a purpose in life
Using technology to connect to others makes me feel I still have a purpose in life, and I have something worthwhile to contribute.
The PLM community has been a huge help
The community on PatientsLikeMe has been a huge help. I’ve been able to get support from people all over who have been through what I was going through, and that has helped me cope and make better decisions about my health. I was able to see what my main issues were through the mood map and monitor the effectiveness of my medications. There were many times the PatientsLikeMe community were far more helpful than my doctor.
It gives me hope that things can get better
One of the things tracking my health on PatientsLikeMe has helped me recognize is that sometimes I think I’ve been feeling lousy forever — I think that’s easy for people with chronic pain to do — but when I look back at my InstantMe chart, I realize there are more days than I thought where I felt good. It gives me hope that things aren’t bad all of the time and that things can get better.
The human spirit is more resilient than we think
I think the first and foremost thing I learned, is that the human spirit is more resilient than we think. I would never have imagined that I could be diagnosed with such a terminal disease, and still continue on with my life as best I could, finding pleasure in simple daily activities.
I'm not alone in this
What I’ve learned from PatientsLikeMe is that I’m not alone in this, so many of us are dealing with similar issues, and that while cancer is different to each individual, what is the same is that most of us are devastated by the effect it has on our loved ones.
I learn something every time I go on
It has been really helpful to read how other people are doing, what meds they are [on] and compare their treatment regimes to mine. This informs me so that I can ask better questions of my oncologist and Macmillan team. I learn something every time I go onto the site.
Fantastic database of information
It's fantastic, this database of information. It's more important to me than any other resource that I have. Nobody has the progressive type of MS that I have. I just can't tell you guys has valuable this is. I know everybody feels this way on the site. Even new people, they'll look up things and they'll find out there's a whole thread dedicated to this or that. So much information. It's great.
I joined PLM to get information
The reason I joined was to get information. I was and am amazed at the sheer number of MS patients. I love the fact that this has database and it keeps statistics. I wanted to learn about how common or uncommon my symptoms were, how people fared, many things like this that could help me make decisions about my own treatment,etc. I try to keep my profile up so that I can add to the pool of info.
My character is bigger and stronger than MS
I’d wanted to keep a health diary for ages but never got around to it, so PatientsLikeMe offered me the opportunity to do just that. Once I’d joined, I found some of the forums interesting and have had some nice chats. We’re all different, of course, but it’s interesting on many levels. MS doesn’t define anyone, or at least shouldn’t. I’m first and foremost me. I happen to have MS, which is kind of all consuming in many ways, but my character is bigger and stronger than MS and will not be changed by this b*ll*cks.
Even a little support helps
Even a little note of support can help pull someone back on the path they want to be on. People on the forum have done it for me so many times. Having a cheering section helps you get the strength together to keep fighting.
I love tracking my condition
I really love tracking my condition and I use the charts to help keep friends and family updated on how I’m doing. The most important thing I have learned is how different and intensely personal everyone’s journey is. Just because something works for me doesn’t mean it is right for others. The forum allows us to share experiences and build supportive relationships.
Better understanding of how disease works
The data they collect is helping with research and with better understanding what the disease does, how it works, what works better for certain problems.
Answers for others living with my disease
I am willing to share my medical data…because I give answers to those who have the disease who have to live with it.
Extremely excited to find PatientsLikeMe
I was extremely excited to find PatientsLikeMe and to find out there were over 30,000 people with MS contributing information to the site. I believe that this type of collaboration will greatly accelerate the discovery process on many fronts - finding the cause of disease, treating the disease, and reversing damage.
Sharing my info is the best way to pay it forward
I really love having one place where I can get a complete picture of what’s going on — not just test scores or symptoms, but also how I’m feeling in relation to everything. The various questions help me tune into my mental, emotional and physical states. And the more I understand about what’s happening with me, the better informed I can keep my doctors, and that helps everything. As for donating data, I am happy to do it. The treatments and techniques that I am benefiting from today were developed with information from patients who came before. Sharing my info is the best way I can think of to pay it forward.
If I'm willing to be transparent, others will be inspired
Sharing my health information with the community is part of being an advocate. If I am willing to be transparent, hopefully others will be inspired to do the same. Together, we are soldiers in this battle against MS. Sharing helps me track important health information and improve research about this disease. It’s very easy for me to do, and I can even do it from my phone. In turn, it benefits us with new treatments and ways to deal with MS. I get excited just thinking about it.
You realize you aren't in this fight alone
When you find a site like PatientsLikeMe and you realize that there are literally tens of thousands of people that share your condition and your struggle. They are there to reach out, share a laugh, share fun, talk politics, whatever it is, answer a question about medication, you realize you really aren’t in this fight alone. You’re not the only one that has these symptoms. It opens up a whole new world for you and it takes an awful lot of the fear away from what you’re going through.
Finding PatientsLikeMe, I felt like 'me' again
I had to retire from my work about 2 years after I was diagnosed and I really felt like I was going home to die. I spent an entire year feeling so depressed. Then I found PatientsLikeMe and within a half an hour, I felt like this weight was lifted off my shoulders. I felt like I found 'me' again.
Helpful tool to track my disease progression
PatientsLikeMe is a great way to connect with others living with MS, to compare symptoms and offer suggestions. I use it as a helpful tool to track my disease progression, keep notes, and learn from others.
We can do much better fighting as a group
We can do much better fighting the disease as a group than we can as individuals...PLM has been extremely helpful in helping me understand I'm not alone.
A virtual support group
PLM is like having a virtual support group. Being able to connect with others who can relate to your condition is priceless. I have had some valuable conversations and established friendships with people through PLM. I have also referred PLM to family and friends. PLM is a great way for me to track my condition and share details with my healthcare providers.
Since joining PLM I have found support and courage to let others know what it is like to have a condition like mine. I hope my story helps let others know all is not lost. PLM helps me keep daily tracks of my moods, my aches, my seizures which I have always wanted to do! To make some one feel better is what I do best! With that PLM ROCKS!
Direct access to others
PatientsLikeMe gives you direct access to other people in your situation. It’s nice to hear from people who have had IPF for many years, what drugs they take, how those affect them, what they are doing themselves to keep a good quality of life and so on. Everybody is different of course, the illness progresses differently in each person, so it’s interesting to see all the variations in medication.
I found people who, like me, want answers
I don’t know many people where I live that have fibromyalgia, and I didn’t realize how welcoming this site would be. I found people who, like me, wanted answers. The sharing of information and support was a nice thing to find.It’s staggering...the information has helped me better communicate with my doctor.
Now I can write again!
I thought I had to live with my frustrating handwriting problems, but PLM helped me talk with my neuro & now I can write again!
PatientsLikeMe has been a life saver
PatientsLikeMe has been a life saver. I live out in a rural community so I get online and I post with everybody. My neurologist loves the fact that I'm on PLM because I actually know what I'm talking about when I go see him. It's a lot of information right at you finger tips.
I am not on my own
"PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most of all I’ve learned that I am not on my own."
Sharing knowledge and experiences
Each time I log on to PatientsLikeMe, I will meet people who truly know what it feels like to wake up in the morning, struggle out of bed, slowly straighten up, stretch, pause for balance, and take that first step. Somehow just sharing knowledge and experiences with people at all stages of my disease tends to lessen the severity of it for me and, I hope, for them.
A very helpful and positive tool for dealing with my illness (HIV)
It is my pleasure to do whatever I can to help this website continue to be a success. This has been a very helpful and positive tool for dealing with my illness. Thanks for the great effort you and your team has given to our community and those of the other communities that your site helps. I have already encouraged friends that could utilize your other communities.
Lights the Darkness
I hope somewhere in here, we end up with the kind of information that lights the darkness surrounding ALS and leads us to the answers for a cure.
No PALS should be without!
Outstanding work on the site, I know what it takes to put a project like this together! It's really something no PALS or CALS should be without!
Major factor in finding out which treatments are working
I found this website to be a major factor in communicating with and finding out about what treatments are working for other ALS patients with similar history and disease progression! I plan to steer all my ALS friends, support group, etc to the site!
I love PatientsLikeMe. I feel connected for the first time in years
I love PatientsLikeMe. I feel connected for the first time in almost 3 years. It's good to see the long timers- gives me hope.
Your site sure brings hope to me
Hi! I joined PatientsLikeMe yesterday and I was very, very impressed with this website!!! This will help the ALS community very much.
I answered all the questions and will be able to track my progression, print off this and questions to my ALS doctors and compare what other treatments that work for other PALS. I also learned a lot including my FRS score that when I tried before was never sure I was doing it right. Thank you!!!
I know there is no ALS cure at this moment but your site sure brings hope to me. I see many new doors opening up for all of us because of this very unique website, PatientsLikeMe.
Thank you! This is tremendous!!!
amazing insight and information
This site has amazing insight and information, plus kind, caring people who care so much about others.
Great and helpful insight
I love this website! Everyone has such great and helpful insight to share about their journey with MS.
This site has been very helpful...it's been quite a boost
This site has been very helpful... I gain most of my information from others like me who are willing to share and from the research updates posted here. And emotionally it's been quite a boost.
My doctor LOVED the printout!
I just want to thank the PatientsLikeMe website for FMS--and for the other conditions too. I forgot to mention that when I went to the Pain Mgmt and Physical Rehab doc, she LOVED the printout I brought from the website and kept it so that her other patients could log on and join the website! Hooray! So...thanks everyone for your support and for all of the great tools. Dr. C. thanks you too and thinks this is really fantastic (as do I)!
What partners, researchers, and physicians are saying about PatientsLikeMe...
Integrate patient insights into decision-making
At Genentech, we come to work every day with the goal of transforming patients’ lives. The collaboration with PatientsLikeMe will allow us to learn more from patients with serious diseases, and better integrate their insights into our decision-making.
More likely to stick with behavior change with support
Online communities are a tremendous resource for people living with a wide variety of different health conditions. Research has shown you’re more likely to stick with the healthy behavior changes you make if you receive some kind of ongoing support. An online community is a perfect way to both offer and receive that kind of support.
Data will become a tool for gaining early insights
PatientsLikeMe brings the power of the internet to help individuals better manage their own illness – education, greater insight into their own condition, online community, reduction of stigma, a sense of community – which can lead to positive benefits even when they are not online. As more people sign up for communities like PatientsLikeMe, this data will become a major tool for research and gaining early insights into which treatments work and which don't.
Knowing you're not alone gives you confidence
For some patients, particularly those with rare diseases, it may be difficult or impossible to find other patients with the same illness. Even for common diseases, there is such comfort in knowing you’re not alone (online or in person, someone knows what you’re going through). Knowing you’re not alone gives you confidence, a sense of control, to persevere and keep living.
Furthers our mission for finding a cure
Working with PatientsLikeMe on research, advocacy and education furthers our mission of finding a cure for psoriasis and psoriatic arthritis and eliminating their devastating effects on patients lives.
Researchers can address fundamental concerns
IPF is a challenging and progressive disease. But every individual is unique and everybody's case is different. By sharing what your feeling or how your experiencing this disease, researchers like me can better identify or develop treatmentws that really address those fundamental concerns and help you live a longer and healthier life.
Voluntary patient registries are crucial to accelerate and transform discovery
Voluntary patient registries like the one Jamie Heywood and his team have pioneered are becoming crucial for researchers like me to accelerate and transform discovery. Our work with PatientsLikeMe will help us further validate our research by giving PVI access to more people, and more information, in real time.
Sharing information relieves stress
When dealing with rare diseases, you learn so much more when you start connecting and you find that maybe a problem, like a fever, is a normal part of the illness and people just haven’t gotten together to figure it out. Being able to share that information relieves a lot of stress for families – we hate the unknown – and it is quite powerful.
Bringing treatments to patients more quickly
PatientsLikeMe provides rare disease patients and caregivers a destination to connect with others while creating a safe place to share important medical data. This will become an increasingly important tool and resource to help not only manage disease, understand best practices, help define better standards of care, but also help researchers find critical information relevant to their science inquiries- ultimately helping bring treatments to patients more quickly
Important role for patients in research
Scientists currently rely on trial data that is totally insufficient. As a result, there is an increasingly important role for patients to play in research.