PatientsLikeMe ™

What do the stars next to the patient profile indicate?

The stars refer to Community Leadership Ratings:

A goal of our community is to share experiences and outcomes so patients can collectively better manage their disease and make decisions that affect their lives.

Towards this end, we hope that patients will work to complete the primary outcome scores for their disease, information about their diagnosis, their personal profile, and an accurate history of their symptoms and treatments.

Patients are awarded up to three stars for contributing this vital information:

Background Star — Patients earn a star by completing their profile, including their biographical and diagnosis information.

Current Star — Patients are awarded a star for keeping their treatments, symptoms, and outcomes current (3 months). Our hope is that members will work to share all prescription medications as well as significant supplements, equipment, and other interventions.

Completeness Star — It's important, both for sharing with the community and working with your clinician, to have as accurate a history of the progression of your illness as possible. Patients earn a star by providing at least four historical primary outcome (FRS) data points spread evenly throughout the time since their first symptom. If the first symptom was less than a year ago, only two data points are necessary.

How do I manage my privacy settings to determine how I share my information?

On your Account section, in the Privacy Settings page, you can choose whether your profile will be publicly accessible or visible only to PatientsLikeMe members. Please read our Openness Philosophy to find out why you should consider making your profile public. By making your profile visible, non-PatientsLikeMe members will be able to view your profile. Account information, such as your real name, address, birth date, and email address will not be displayed. See our privacy policy for more details.

Because the value of PatientsLikeMe is in helping other patients learn from your experience, we hope that you feel comfortable enough to make your profile as visible as possible.

How do I update/edit my treatments?

It is easy to add, update, or remove a treatment from your treatment regimen on the treatment history page.

To add a new treatment, click the “Add” button at the bottom. On the next page, choose your treatment from the list available. If you do not see the treatment you want, you can add it in the box at the bottom that says “I am taking something else.”

Once you have added a treatment, you can update its information on the treatment history page by clicking “update” and then clicking one of the following:

• To change information you have entered, click “edit”.
• If your dosage has changed since you first entered your treatment, click “I've changed dosage”. On the following page, you can indicate when you changed to dosage and what the new dosage is.
• If you are no longer taking a treatment, click “I've stopped taking this”. On the following page you can indicate when you stopped taking it and for what reason.
• If you would like to completely delete any record of your taking that treatment, click “Delete”. Note that if you simply want to report that you are no longer taking the treatment, you should should instead click “I've stopped taking this”.

How do I update/edit my outcome scores?

It is easy to add or edit your outcome scores. Your FRS Progress page shows all your FRS scores. (FRS stands for Functional Rating Scale, and it is a self-report version of the ALS functional rating scale). If you want to edit an existing score, simply click on that score. To add a new FRS score click on "Add New". You can change the date at the top to the date you would like to report, if needed.

On that same page in the left column are links to the other pages, like Diagnosis History, FVC and Weight where you can add and edit those scores as well.

How do I update/edit my outcome scores?

It is easy to add or edit any outcome scores. Your PDRS Progress page shows you all your PDRS scores. If you want to edit an existing score, simply click on that score. To add a new PDRS score click on "Add New" to add another. You can change the date at the top to the date you would like to report if needed.

On that same page in the left column are links to the other pages, like Diagnosis History and Weight where you can add and edit those scores as well.

How do I update/edit my outcome scores?

It is easy to add or edit any outcome scores. Your MSRS Progress page shows you all your MSRS scores. MSRS stands for "Multiple Sclerosis Rating Scale", and is a measure developed by PatientsLikeMe to track MS progression. If you want to edit an existing score, simply click on that score.

To add a new MSRS scoreclick on "Add New" to add another. You can change the date at the top to the date you would like to report if needed. On that same page in the left column are links to the other pages, like Diagnosis History, Relapses and Weight where you can add and edit those scores as well.

How do I add more information and pictures about myself?

You can add more detailed information about yourself (or your families, hobbies, pets, whatever you like) in the More About Me section of your profile.

To add more details to your profile:

1. Go to your profile.
2. Go to About Me.
3. Add your text, and if you want to add a picture:
   1. Click on the tree icon.
   2. Browse for the picture you want to use (i.e. find it on your computer)
   3. When you have it, click Upload Picture and wait while it gets uploaded.
   4. When it's done you'll see a green bar at the top with the message "Your profile picture has been updated."
   5. Click on picture.
   6. Browse for the picture you want to use (i.e. find it on your computer)
   7. When you have it, click Upload Picture and wait while it gets uploaded.
4. Click Update
5. When it's done you'll see a green bar at the top with the message "Your bio info was successfully updated.."

Note that the Rich Text Editor does not currently work in Safari.

How do I add a picture to my profile?

To upload a picture from your computer to your profile:

1. Go to your profile.
2. Click on picture.
3. Browse for the picture you want to use (i.e. find it on your computer)
4. When you have it, click Upload Picture and wait while it gets uploaded.
5. When it's done you'll see a green bar at the top with the message "Your profile picture has been updated."

How do I change my email address?

You can change your email address on your Account page.

How do I manage my groups of patients?

Creating patient groups is a great way to track a group of friends or other patients with similar characteristics.

You can manage your groups of patients here. Click on a group to see the complete group details and remove patients.

To create a new group, click on “Create a Group” at the bottom.

What do the stars next to the patient profile indicate?

Stars reflect how much data you've shared with the community.  Our research shows there may be a correlation between how much you share and health benefits from the site. The more stars you have, the more information you've shared. You can earn up to three profile stars.

Background Star — Earn a star by adding basic information to your profile, including your biographical and diagnosis information.

Current Star — you can earn a second star by keeping your treatments and symptoms and outcomes (MSRS) current. Every piece of information is useful in helping understand your disease experience, so be sure to include prescription medications as well as significant supplements and other interventions.

Completeness Star — It's important, both for sharing with the community and working with your clinician, to have as accurate a history of your experience with MS as possible. Patients earn a star by providing at least four historical primary outcome (MSRS) data points spread evenly throughout the time since their first symptom. If the first symptom was less than a year ago, only two data points are necessary.

Your personalized 3-star Guide can help you earn these profile stars. 

What do the stars next to the patient profile indicate?

The stars refer to Community Leadership Ratings:

A goal of our community is to share experiences and outcomes so patients can collectively better manage their disease and make decisions that affect their lives.

Towards this end, we hope that patients will work to complete the primary outcome scores for their disease, information about their diagnosis, their personal profile, and an accurate history of their symptoms and treatments.

Patients are awarded up to three stars for contributing this vital information:

Background Star — Patients earn a star by completing their profile, including their biographical and diagnosis information.

Current Star — Patients are awarded a star for keeping their treatments, symptoms, and outcomes current (3 months). Our hope is that members will work to share all prescription medications as well as significant supplements, equipment, and other interventions.

Completeness Star — It's important, both for sharing with the community and working with your clinician, to have as accurate a history of the progression of your PD as possible. Patients earn a star by providing at least four historical primary outcome (PDRS) data points spread evenly throughout the time since their first symptom. If the first symptom was less than a year ago, only two data points are necessary.

What do the stars next to the patient profile indicate?

The stars refer to Community Leadership Ratings:

A goal of our community is to share experiences and outcomes so patients can collectively better manage their mental health and make decisions that affect their lives.

Towards this end, we hope that patients will work to complete the primary outcome scores for their disease, information about their diagnosis, their personal profile, and an accurate history of their symptoms and treatments.

Patients are awarded up to three stars for contributing this vital information:

Background Star — Patients earn a star by completing their profile, including their biographical and diagnosis information.

Current Star — Patients are awarded a star for keeping their treatments, symptoms, and outcomes current (3 months). Our hope is that members will work to share all prescription medications as well as significant supplements, equipment, and other interventions.

Completeness Star — It's important, both for sharing with the community and working with your doctors and therapists, to have as accurate a history of the progression of your of your condition as possible. Patients earn their third star by completing at least four mood maps. One mood map must be done within the first month of joining and one must be within the last 3 months.  The other two entries can be at any time. We suggest the following guidelines: complete one mood map for the time your mood symptoms were at their best and one for the time your mood symptoms were at their worst. If any of these are the same time, add another mood map until you have 4 entries.

What do the stars next to the patient profile indicate?

The stars refer to Community Leadership Ratings:

A goal of our community is to share experiences and outcomes so patients can collectively better manage their fibromyalgia and make decisions that affect their lives.

Towards this end, we hope that patients will work to complete the primary outcome scores for their disease, information about their diagnosis, their personal profile, and an accurate history of their symptoms and treatments.

Patients are awarded up to three stars for contributing this vital information:

Background Star — Patients earn a star by completing their profile, including their biographical and diagnosis information.

Current Star — Patients are awarded a star for keeping their treatments, symptoms, and outcomes current (3 months). Our hope is that members will work to share all prescription medications as well as significant supplements, equipment, and other interventions.

Completeness Star — It's important, both for sharing with the community and working with your doctors and therapists, to have as accurate a history of the progression of your of your condition as possible. Patients earn their third star by completing at least four PFRS scores. One entry must be done within the first month of joining and one must be with in the last 3 months.  The other two entries can be at any time. We suggest the following guidelines: complete one PFRS for the time your symptoms were at their best and one for the time your symptoms were at their worst. If any of these are the same time, add another PFRS score until you have 4 entries.

What do the stars next to the patient profile indicate?

The stars refer to Community Leadership Ratings:

A goal of our community is to share experiences and outcomes so patients can collectively better manage their disease and make decisions that affect their lives.

Towards this end, we hope that patients will work to complete the primary outcome scores for their disease, information about their diagnosis, their personal profile, and an accurate history of their symptoms and treatments.

Patients are awarded up to three stars for contributing this vital information:

Background Star — Patients earn a star by completing their profile, including their biographical and diagnosis information.

Current Star — Patients are awarded a star for keeping their treatments, symptoms, and outcomes current (3 months). Our hope is that members will work to share all prescription medications as well as significant supplements, equipment, and other interventions.

Completeness Star — It's important, both for sharing with the community and working with your clinician, to have as accurate a history of the progression of your illness as possible. Patients earn a star by providing at least four historical primary outcome (CD4 and Viral Load) data points spread evenly throughout the time since their first symptom. If the first symptom was less than a year ago, only two data points are necessary.

What do the stars next to the patient profile indicate?

The stars refer to Community Leadership Ratings:

A goal of our community is to share experiences and outcomes so patients can collectively better manage their disease and make decisions that affect their lives.

Towards this end, we hope that patients will work to complete the primary outcome scores for their disease, information about their diagnosis, their personal profile, and an accurate history of their symptoms and treatments.

Patients are awarded up to three stars for contributing this vital information:

Background Star — Patients earn a star by completing their profile, including their biographical and diagnosis information.

Current Star — Patients are awarded a star for keeping their treatments, symptoms, and outcomes current (3 months). Our hope is that members will work to share all prescription medications as well as significant supplements, equipment, and other interventions.

Completeness Star — It's important, both for sharing with the community and working with your clinician, to have as accurate a history of the progression of your illness as possible. Patients earn a star by providing at least four historical primary outcome (UPDRS)  data points spread evenly throughout the time since their first symptom. If the first symptom was less than a year ago, only two data points are necessary.

What do the stars next to the patient profile indicate?

The stars refer to Community Leadership Ratings:

A goal of our community is to share experiences and outcomes so patients can collectively better manage their disease and make decisions that affect their lives.

Towards this end, we hope that patients will work to complete the primary outcome scores for their disease, information about their diagnosis, their personal profile, and an accurate history of their symptoms and treatments.

Patients are awarded up to three stars for contributing this vital information:

Background Star — Patients earn a star by completing their profile, including their biographical and diagnosis information.

Current Star — Patients are awarded a star for keeping their treatments, symptoms, and outcomes current (3 months). Our hope is that members will work to share all prescription medications as well as significant supplements, equipment, and other interventions.

Completeness Star — It's important, both for sharing with the community and working with your clinician, to have as accurate a history of the progression of your illness as possible. Patients earn a star by providing at least four historical primary outcome (UPDRS)  data points spread evenly throughout the time since their first symptom. If the first symptom was less than a year ago, only two data points are necessary.

What do the stars next to the patient profile indicate?

The stars refer to Community Leadership Ratings:

A goal of our community is to share experiences and outcomes so patients can collectively better manage their disease and make decisions that affect their lives.

Towards this end, we hope that patients will work to complete the primary outcome scores for their disease, information about their diagnosis, their personal profile, and an accurate history of their symptoms and treatments.

Patients are awarded up to three stars for contributing this vital information:

Background Star — Patients earn a star by completing their profile, including their biographical and diagnosis information.

Current Star — Patients are awarded a star for keeping their treatments, symptoms, and outcomes current (3 months). Our hope is that members will work to share all prescription medications as well as significant supplements, equipment, and other interventions.

Completeness Star — It's important, both for sharing with the community and working with your clinician, to have as accurate a history of the progression of your illness as possible. Patients earn a star by providing at least four historical primary outcome (MSRS)  data points spread evenly throughout the time since their first symptom. If the first symptom was less than a year ago, only two data points are necessary.

How do I cancel my account/remove my profile?

You can cancel your account at any time. Please email us at support@patientslikeme.com to make this request.

What do the stars next to the patient profile indicate?

Stars reflect how much data you've shared with the community.  Our  research shows there may be a correlation between how much you  share and health benefits from the site.  The more stars you have, the  more information you've shared.  You can earn up to three profile stars.

Background Star — Earn a star by adding basic information to your profile, including your biographical and diagnosis information.

Current Star — you can earn a second star by keeping your treatments and symptoms current (within the past 3 months), and for completing  a recent Quality of Life survey. Every piece of information is  useful in helping understand your disease experience, so be sure to  include prescription medications as well as significant supplements  and other interventions.

Completeness Star — It's important, both for sharing with the  community and working with your clinician, to have as accurate a  history of your transplantation journey as possible. Earn a star by completing your QoL survey, which provides data points that captures  your primary health outcome scores (QOL) over time.

Your personalized 3-star Guide can help you earn these profile stars. 

What do the stars next to the patient profile indicate?

Stars reflect how much data you've shared with the community.  Our research shows there may be a correlation between how much you share and health benefits from the site. The more stars you have, the more information you've shared. You can earn up to three profile stars.

Background Star — Earn a star by adding basic information to your profile, including your biographical and diagnosis information, and your seizure and condition histories.

Current Star — you can earn a second star by keeping your treatments and symptoms current (within the past 3 months), and for completing a seizure meter for each of the last 4 full weeks. Every piece of information is useful in helping understand your disease experience, so be sure to include prescription medications as well as significant supplements and other interventions.

Completeness Star — It's important, both for sharing with the community and working with your clinician, to have as accurate a history of your Epilepsy as possible. Earn a star by completing your "Seizure Meter" survey in for the last full week (Sun-Sat) prior to sign-up, and plus two other "Seizure Meters" at any time.

Your personalized 3-star Guide can help you earn these profile stars. 

My profile charts don't show up at all. What should I do?

First, you should check to see if you have Flash installed on your browser. If you have a player that is version 9.0115 or later, your profile charts should appear.

If you do not have Flash installed, or have a version earlier than 9.0115, you will need to install Flash.

I have Flash installed, but my charts still don't work.

It's possible your Flash player may be corrupted. To fix that, you will need to uninstall Flash, and then reinstall it.

To uninstall the Flash player for Windows, download and run this application. For more information on uninstalling Flash player, go here.

After you have run the uninstaller, restart your machine.

After restarting, install Flash.

I’ve reinstalled Flash and the charts still aren’t showing up.

You may have to change the security setting on your browser to allow plug-ins to run. Below are instructions for Windows users using Internet Explorer or Chrome. If you need instructions for another browser, please contact us at support@patientslikeme.com

For Internet Explorer users...
Open Internet Explorer.
Click on Tools, Internet Options
Click on the Security Tab
Click Custom Level
Find the section titled "ActiveX controls and plug-ins"
Choose Prompt for "Download Signed ActiveX Controls"
Choose Prompt for "Run ActiveX Controls and Plug-ins"
Click OK twice to close the options screen

For Chrome Windows users..
1. Open Chrome.
2. Select "Options" from the upper right menu (it looks like a wrench).
3. Choose the "Under the Hood" tab.
4. Under Privacy, click "Content settings...".
5. Choose the "Plug-ins" tab.
6. Select "Allow all sites to use plug-ins (recommended)"'
7. Press the Close button to close "Content settings..." and "Options".

If you are still having problems installing Flash, please read this Adobe FAQ.