Welcome to ExpressMS

Together we can speak MS
 

In partnership with people living with MS, Janssen has created ExpressMS to support you in your daily life.

You may be someone living with multiple sclerosis (MS) or a family member, friend or loved one of someone that is. Welcome to the page and we hope you find it useful.

ExpressMS aims to help you share the extent of your invisible MS symptoms, that might not be immediately visible to others, e.g. brain fog, pain, fatigue, etc. Greater understanding starts with a conversation.

Available as an app on your device or resources you can download. ExpressMS is designed to support meaningful conversations and encourage an open dialogue about invisible MS symptoms.

 

How does the ExpressMS app work?

 


Download the ExpressMS app to help support your daily conversations
 

The ExpressMS keyboard app is available to download on iOS mobile devices for users in Germany now, and will soon be more widely available in other European countries. An Android version will also be available soon.

 

You can still be part of ExpressMS even if you don’t want to download the app or it isn’t available in your country.
Click here to see a sample of the new vocabulary.


Share ExpressMS
 

Together we can speak MS. If you know someone living with MS or a friend/family member who might find this interesting, share the app or a link to this page with them and see how it could help.

 

 

What are invisible MS symptoms?
 

You can experience a wide variety of symptoms because of MS1 – some will be visible to those around you, but an invisible symptom refers specifically to one that’s affecting you but can’t be visibly seen, for example:

• Fatigue2
• Emotional changes2,3
• Problems with cognition2
• Skin tingling2
• Itching and pain2

These symptoms can have an enormous impact on you4, but their invisible nature can make them difficult to talk about, and other people don’t always recognise or understand the challenges or reality of living with them.5

You can find more information on invisible MS symptoms here .

 

More about ExpressMS
 

We have launched the ExpressMS initiative because we believe that understanding starts with a conversation. Not only can invisible MS symptoms be difficult for you to talk about and for others to recognise,5 but all too often the words used to describe them are overused by wider society.

For example, saying we are ‘exhausted’ at the end of a long week when we are only tired, or ‘overwhelmed’ when we are having a difficult day; this can devalue their true meaning and create a barrier to wider appreciation and understanding.4,6

ExpressMS aims to encourage greater awareness and understanding, leading to deeper conversations and better support for your invisible MS symptoms.


More about the ExpressMS Keyboard
 

The ExpressMS keyboard has been designed to help you find the words to have more meaningful conversations about your invisible MS symptoms. It is available to download and install on iOS devices for users in Germany now, and will soon be more widely available in other European countries. An Android version will also be available soon.

1
Start typing

2
Find your phrase

 

3
Click to select

 

 

The ExpressMS mobile phone keyboard uses the auto-correct functionality to suggest new phrases and expressions to help you find more descriptive phrases about how you are truly feeling, and encourages more meaningful discussions with friends, family, colleagues, and doctors about the invisible symptoms of MS.


ExpressMS: Translating the extent of your invisible MS symptoms
 

We know that invisible MS symptoms can have an enormous impact on your day-to-day life,4 but all too often, the words used to describe these symptoms, for example “I’m groggy” or “I’m exhausted”, are also used by wider society – this can make it difficult to describe how you’re really feeling.4,6

If your friends don’t understand when you say you’re ‘too tired’ to meet up, or your manager doesn’t appreciate why you need another day off work, or even if you feel like you’re struggling to have meaningful conversations with your healthcare team, ExpressMS may be able to help.

Next time you need to talk about your invisible symptoms, try using more descriptive language to explain how you’re feeling; for example, rather than saying “I’m tired,” try something like “I feel as if I’ve run a marathon”.

Below you can find the five most talked about invisible symptoms, accompanied by more descriptive vocabulary for you to try out.

I feel in need of rebooting

I feel as though I'm missing an 'on' switch

I feel like I have no control over my thoughts

I feel sloth-brained

I feel like everything is in a foreign language

I feel like a flat battery

I feel as if my bones are made of lead

I feel like a frozen download

I feel like an empty shell

I feel like I have no control over my thoughts

I feel I’m carrying the weight of the world

I feel like something terrible is a minute away

I feel like I'm running on fumes

I feel like there's a 100lb weight on my chest

I feel like I'm at the top of a rollercoaster

I feel burnt out by the constant pain

I feel like I’m throbbing from head to toe

I feel like I’m constantly battling my body

I feel like I’m being pricked with needles

I feel like a human ant nest

I feel like I’m being squeezed by a boa constrictor

I feel like a folded accordion

I feel as if I’m under a giant paperweight

I feel like I’m re-entering Earth's atmosphere

I feel like I’m wearing an Elizabethan corset

This vocabulary has been developed from extensive online analyses of the most talked-about invisible MS symptoms and the phrases associated with them, and then verified by people living with MS.

1. NHS. Multiple sclerosis: symptoms. Available at: https://www.nhs.uk/conditions/multiple-sclerosis/symptoms/ Last accessed June 2021.

2. National Multiple Sclerosis Society. MS symptoms. Available at: https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms Last accessed May 2021.

3. Multiple Sclerosis Society. Depression. Available at: https://www.mssociety.org.uk/about-ms/signs-and-symptoms/mental-health/depression Last accessed May 2021.

4. Janssen Data on File. RF-139281.

5. Multiple Sclerosis Society. MS symptoms and signs. Available at: https://www.mssociety.org.uk/about-ms/signs-and-symptoms. Last accessed May 2021.

6. Braley TJ, Chervin RD. Fatigue in multiple sclerosis: mechanisms, evaluation, and treatment. Sleep. 2010;33:1061-1067.