PatientsLikeMe ™

I registered but didn't get an activation message. How do I activate my account?

Before contacting us, please check your junk mail or spam folder as emails can sometimes get mislabeled as spam.  If you don't find your activation message in your junk mail or spam box, please let us know and we'll be in touch to help.

I forgot my password. What should I do?

No problem!   Just go to the password reset page, enter your e-mail address and we will send a message to your e-mail address with instructions for resetting your password.

How do I get started using PatientsLikeMe?

Here are three suggestions to get started:

1. Start by completing your profile. This gives other people some sense of who you are, what you've been through and helps other patients find patients "like you"--whether by age, location, treatments, or symptoms. You can also add a photo of yourself (or one of your favorite things).


2. Next, provide your FRS outcome scores. FRS stands for Functional Rating Scale, and it is a self-report version of the ALS functional rating scale. The results will create a stickman, a graphical representation of your current condition that appears in your profile.


3. Finally, complete your symptom and treatment information. This enables you to track and manage your condition. You now have a record of the progression of your condition, and you'll be able to track it more closely. You can print this information in your Doctor Visit sheet to provide your doctors and specialists with a complete record of your progression.

How do I get started using PatientsLikeMe?

Here are three suggestions on how to get started on PatientsLikeMe:

1.   Create Your Profile - your profile includes basic information about you, your Bio, and your diagnosis history. As part of your profile you can add a photo of yourself or of one of your favorite things. Instructions on how to add photos are available in our Help section.


2. MSRS - You can create your MSRS scores. MSRS (Multiple Sclerosis Rating Scale) is a self-administered measure developed by PatientsLikeMe to track MS progression.


3. Symptoms and Treatments - You can add your current symptoms and treatments, if any.

How do I get started using PatientsLikeMe?

Here are three steps to get started using PatientsLikeMe:

1. Start by completing your profile. This gives other people some sense of who you are, what you've been through and helps other patients find patients "like you"--whether by age, location, treatments, or symptoms. So this is very helpful information. You can also add a photo of yourself (or one of your favorite things).


2. Next, update your PDRS scores. PDRS (Parkinsons Disease Rating Scale) is a measure developed by PatientsLikeMe to track Parkinsons progression. The results will create a stickman, a graphical representation of your current condition that appears in your profile.
   
   We suggest that you fill in earlier PDRS scores so you have a more complete record of your condition over time. To add previous PDRS scores use the PDRS score page, and change the date at the top to the date you want to record. These may not be exact, but can help give you a rough picture of how you were doing over time.


3. Finally, complete your symptom and treatment information. You can also add previous symptom and treatment information so you have a more complete history.

Are other ALS-related conditions included here?

In addition to ALS/Motor Neuron Disease this community includes patients diagnosed with Progressive Muscular Atrophy (PMA) and with Primary Lateral Sclerosis (PLS). You can find patients with these specific conditions by using  the Advanced Patient Search.

Can my doctor access or update my PatientsLikeMe information?

We hope that someday doctors will be able to directly access or update your PatientsLikeMe information (with your permission). If your doctor is interested in using PatientsLikeMe to access your information, please contact us and let us know.

How can I create a badge to use on email and other sites?

You can create a badge to use on other sites or as a signature on your email by going to the badge section of your Account information, and following the instructions there.

How do I enable JavaScript in my browser?

The PatientsLikeMe website uses an extensive amount of JavaScript to enhance your user experience. JavaScript allows us to provide faster responses to your actions by retrieving data instantly without always needing to reload the page.

Read below to see how to enable JavaScript on your specific browser:

Internet Explorer

1. In the toolbar, go to Tools > Internet Options
2. Select the Security tab
3. Click the Custom Level button
4. Scroll down to the "Scripting" section
5. In the "Active Scripting" section, check the Enable option, then click the OK button
6. Click the Yes button on the dialog asking "Are you sure you want to change the settings for this zone?"
7. Click the OK button
8. Refresh your browser

Firefox

1. In the toolbar, go to Preferences
2. Select the Content button
3. Check the Enable JavaScript checkbox
4. Click the OK button
5. Refresh your browser

Safari

1. In the toolbar, go to the Safari menu > Preferences
2. Select the Security button
3. Under "Web Content" check the option for Enable JavaScript
4. Click the X button to close the window
5. Refresh your browser

Opera

1. In the toolbar, go to Tools > Preferences
2. Select the Advanced tab
3. In the left pane, select Content
4. Check the option for Enable JavaScript
5. Click the OK button
6. Refresh your browser

Is my medical information safe on PatientsLikeMe?

Your personally identifiable information is confidential and is never shared with any third parties without your consent. See our privacy policy for more information.

Your treatment, outcome, and symptoms information is shared with other viewers of the PatientsLikeMe website in accordance with your account privacy settings. You make the decision about how much information other patients can see about you. Read more about how to manage your privacy settings.

What is a PDRS score?

 The PatientsLikeMe PDRS (Parkinsons Disease Rating Scale) consists of the first two sections of the UPDRS, a rating scale developed for use in clinical trials that your neurologist might use. There is a further part (Section III) which consists of a neurological examination of your Parkinson's but patients aren't able to complete this themselves so we haven't included it.
 
Your PDRS score is a way of measuring the severity of  your Parkinson's and determining where a patient might be in with regard to progression. The scores range from 0-100 with 100 being the most severe. Part of the score is composed of mood variables as well as physical features of the disease.

What is an FVC score?

Forced Vital Capacity, or FVC, is a measurement of lung strength. It measures the patient's ability to breathe independently and is an important indicator of ALS progress.

What is an FRS score?

The FRS, or the ALS Functional Rating Scale (also known as the ALSFRS-R), helps you keep track of your overall condition by measuring symptoms in all parts of your body: head, chest, arms, and legs. You can ask your doctor to help determine your FRS score or take a simple survey on our site.

The stickman that appears for each patient is the graphical representation of that patient’s current FRS progress as it affects the various parts of his or her body.

The FRS progress chart shows a patient’s FRS progress against a background of typical FRS progress.

What does the stickman mean?

The stickman is a graphical representation of a patient’s current FRS score. The color of each section of the stickman—head & neck, arms, chest, and legs—reflects the severity of the disease  in that part of the patient’s body.

The level of severity is an approximation based on the 12 answers to the FRS survey. Green represents the mildest level of current severity, yellow represents mild severity, orange represents moderate severity, and red represents the most severe symptoms. A gray stickman indicates that no FRS data are yet available for that patient.

What does the stickman mean?

The stickman is a graphical representation of a patient’s current MSRS score. The color of each section of the stickman reflects the severity of the disease  in that part of the patient’s body.

The level of severity is an approximation based on the answers to the MSRS survey. Green represents the mildest level of current severity, yellow represents mild severity, orange represents moderate severity, and red represents the most severe symptoms. A gray stickman indicates that no MSRS data are yet available for that patient.

The glow around your stickman means you're currently experiencing a relapse (so far as you have told us on your profile) while the lightning bolt represents pain / sensory problems.

What is this H-Y icon in my profile?

 The Hoehn & Yahr scale was one of the first staging systems in Parkinson's disease and is still widely used. It describes five stages of progression which correlate with disease progress. There are distinct stages; for instance stage I describes a patient who only has symptoms on one side of their body (unilateral). As soon as the patient experiences symptoms on both sides of the body, they are considered to be stage II.

What is an MSRS score?

 The MSRS, or the Multiple Sclerosis Rating Scale is a  measure developed by PatientsLikeMe to track MS progression. It is adapted from the Guy's Neurological Disability Scale. It helps you keep track of your overall condition by measuring symptoms in all parts of your body. The scores range from 0-100 with 100 being the most severe. The stickman that appears for each patient is the graphical representation of that patient’s current MSRS progress as it affects the various parts of his or her body.

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.

How do I change my username?

You can ask the PatientsLikeMe support staff to change your username by using the "Report Website Problem" link at the bottom of any page. You cannot do this yourself, but we would be happy to help you.

How do I enable cookies in my browser?

The PatientsLikeMe website requires cookies in order to let you login. Cookies are small text files that are saved on your computer to facilitate communication between your browser and the website. In this case, the cookies are used to keep you logged-in from page-to-page, so you are not required to re-enter your password for each page.

To enable cookies for Microsoft Internet Explorer 6.x:

1. Select Internet Options from the Tools menu.
2. Then go to Privacy (tabs).
3. Under "Settings", move the slider bar to Medium-High.
4. Click the OK button

To enable cookies for Netscape 6.x and Firefox:

1. On a Mac, go to the Preferences in the Firefox menu. On Windows, go to Tools > Options.
2. Select the Privacy button
3. Check the Accept Cookies from sites checkbox
4. Click the OK button
5. Click Reload on the browser menu when you return to the webpage.

To enable cookies for Microsoft Internet Explorer 5.x:

1. Select "Internet Options" from the Tools menu.
2. Click on the "Security" tab.
3. Click "Custom Level" button.
4. Scroll down to the "Cookies" section.
5. Set "Allow cookies that are stored on your computer" to "Enable".
6. Set "Allow per-session cookies" to "Enable".
7. Click "OK"

To enable cookies for Safari:

1. On a Mac, in the toolbar, go to the Safari. On Windows, go to the Edit menu
2. Choose Preferences
3. Select the Security button
4. Under "Accept Cookies" check the option for Only from sites you navigate to
5. Click the X button to close the window

To enable cookies for Opera:

1. On a Mac, open the Opera menu. On Windows, in the toolbar, go to Tools
2. Select Preferences
3. Select the Advanced tab
4. In the left pane, select Cookies
5. Check the option for Accept cookies
6. Click the OK button

What do the symbols in the patient nugget mean?

The symbols you might see in a patient nugget may include:

  member is using a Bi-pap (non-invasive ventilator)

  member is using a feeding tube

  member is using a ventilator

These are added based on the answers given in the patient's latest FRS survey. 

Help, I think I received spam at PatientsLikeMe!

If you receive a private message that you consider abusive or spam (this happens very rarely, but just in case) please use the "report spam" button on the message you received. This will send a copy of the message to multiple PatientsLikeMe staff members so that we can address the issue as soon as possible.

How do I upgrade my web browser?

PatientsLikeMe is optimized to work best with modern, standards-compliant web browsers. There are several browsers available to choose from: All are free and make it convenient to transfer your favorites or bookmarks over to the new version.  Browsers we would recommend are:

Firefox 3 and up (download here)

Safari 3 and up (download here)

Internet Explorer 7 and up (download here)

Opera 9.5 and up (download here) 

Why are we encouraging our users to upgrade? The time spent developing the PatientsLikeMe website is disproportionally spent on fixing bugs seen only in older browsers, like Internet Explorer 6 (also known as IE6) which was released in 2001. Since that time, IE7 has been released and IE8 is right around the corner. The less time we need to devote to IE6 means we will be able to come up with new features to benefit all of PatientLikeMe's community members. The additional benefit to you is that you will have a faster, more responsive and secure browser, with convenient features like tabbed browsing and popup blockers.

What is a PFRS score?

 The PFRS, or the Pain and Fatigue Rating Scale is a measure developed by PatientsLikeMe to track Fibromyalgia and CFS/ME progression.  It helps you keep track of your overall condition by measuring fatigue, pain, morning stiffness and sleep distrurbance. The scores range from 0-100 with 100 being the most severe. The stickman that appears for each patient is the graphical representation of that patient’s current PFRS progress.

How do I post an image?

To post an image click on the little picture of a tree located between the link button and the smiley face in the tool bar. That will take you to a pop up window where you can select the image you'd like to post. Once you've selected it, hit upload and the picture should appear in your post.

How do I share my website or product/service with the community?

There are ways to let patients who are interested know about your website or product in a very casual way.  For example, many of our members highlight this informaiton in the About Me section of the profile.   The general rule is don't bug people.  Below are some examples to help you.

Tip:   The trust on which these communities are built comes from the deep-sharing of health information that happens on this site.  Your advice or suggestions will be better received if you're also sharing information about yourself via your profile. 

DO...
Provide a contextual reference to any recommendation or suggestion you make on the website (whether through the forum or private messaging).

Examples:

• "I'm a patient/doctor/researcher/guest who is taking X treatment (or studying this condition), and here's what I've experienced"
• "I heard you talking about X, and thought you might find this website useful.  It helped me by..."

DON'T...
Beat people over the head with your perspective, send people unsolicited private messages pushing your product or website, or include your favorite product or website in every forum post. 

Examples:

• "I'm taking X drug and you should too!"  (Let me tell you over and over again in the forum and private messaging.)
• "I have a website (or product) that you need to know about..."   (No, you didn't ask me about it and there is no contextual reference for why I bring it up, but I'm going to tell you about it anyway through every possible way on this site.)

 

What are reminders?

Reminders are sent to your email address to remind you to update your profile data (symptoms, treatments, etc.)  at PatientsLikeMe. You control if and how often these are sent to you.

There are now 4 ways you can be notified, and you can control how each works.

1. Private messages - to determine if you get am email when someone PMs you, or leaves a message on your profile  
2. Newsletters - we send out a monthly community newsletter, which you can get emailed to you.  
3. Announcements from our partners - you can decide if you'd like to hear about the clinical trials research updates and other info from our industry, research and non-profit partners.  
4. Update reminders - decide when/if you want to be reminded to update your MSRS, weight, treatments and symptoms.

You manage reminders on your Account page, under Email Notifications.

How do I change the frequency of my reminders?

You  manage your reminders (change the frequency, or tell us  to not send them to you) on your Account page,  in the Email Notifications section.

How can I request a Doctor or Researcher account?

In keeping with our philosophy of openness, transparency and trust we require credentials for those who wish to be identified as doctors and researchers on PatientsLikeMe. 

The criteria to be registered as a doctor is an active license to practice. Those registered as a Researcher members will need to have academic affililations or an academic email address and hold a PhD.

Those who want to be identified as either can request this change on their About Me page.