Connecting the MS community

Separating fact from fiction: Staying connected to the MS community

Published 29 May 2020

We have seen a significant change in the way many of us communicate with one another on a daily basis. People around the world are turning to technology and social media to stay connected; not only to their family and friends, but also to their healthcare teams and the latest information on the COVID-19 pandemic and their own health.

However, the landscape is constantly changing, with new information from health officials being shared every day. As a result, more people are posting their opinions online and, in turn, blurring the lines between fact and fiction.

As we continue to try to understand the impact of this pandemic on the health of millions around the world, including the more than 2.3 million people living with multiple sclerosis (MS), it is important to remember that we live in a world where all the facts aren’t certain yet. Equally as important, remember that every situation can be different, and what you read online may not be relevant to everyone.

Separating Fact from Fiction

As experts continue to collect information and build their understanding of this virus and its impact on conditions like MS, it’s important to know what to look out for in order to find trustworthy resources when navigating the flurry of information online.

Working on a computer in a coffee shop

Check that there is a source

  • First and foremost, make sure what you’re reading online is published by a credible and expert source.
  • More often than not, this comes in the form of journal articles, containing data from well-defined and highly regulated studies.
  • In many instances, news articles will link to the original source they’re referencing throughout or at the bottom of the story, helping to validate the information they’re sharing or reporting on.
Scientists analysing brain scans

Validate individual credentials and expertise

  • Furthermore, it’s important to look at who specifically is sharing this information.
  • We’re continuing to see people outside of the medical or scientific community share their own perspectives online, passing them as fact, rather than opinion, which can often be confusing if what you’re reading sounds convincingly factual and confident.
  • Healthcare professionals are an important and reliable source of information, sharing helpful and expert opinions and advice, often affiliated with a credible institution or hospital.
  • You can find more information about their credentials by searching for them on Google or LinkedIn.
Woman at home working on the computer

Understand how the information is being used

  • Often, information online can be exaggerated or taken out of context.
  • For example, this can happen when statistics are incorrectly used to support certain conclusions or claims.
  • That’s why it’s important that after you confirm it’s from a reliable source, you understand how the information was collected and what it was based on.
  • For example, when looking at case reports or studies online, look at how many people participated or were involved in the study. A statistic like 90% can seem high, but if the population studied was only 5 people in total, it may not be significant when a larger or more diverse population is studied.
Checking news on a mobile device

Check timestamps and do your due diligence

  • A common trend in fake news is making outdated information or unreliable sources seem timely and relevant – so it is important to check the facts when reading stories online.
  • If someone is posting something on social media, make sure you click through to the article or resource that they’re linking to. Often, people will re-post or share something online, simply based on the headline, not realising the article or study is old or has no link to what they’re sharing.
  • That’s why it’s important to do your own due diligence and make sure what you’re reading or responding to is timely, reliable and relevant.
A man analyzing scientific data

Remember things are changing

  • Every day, information is evolving as new data are being collected that will help us to make more informed decisions about how to deal with this pandemic.
  • As more information is known, data are being used to help inform new guidelines and recommendations on disease management and treatments, including those specific to the MS community.
  • That’s why it’s important to remember that we’re at a crucial time, as experts continue to build evidence to support improved patient care. So be sure to speak to your healthcare team if you have concerns about your own health.

Connecting the MS Community

We understand that this may be a difficult time for many in the MS community. You may be one of the many staying at home or practicing safe social distancing, and it can be challenging to feel connected or a sense of daily routine.

With current social distancing measures expected to remain in effect in many countries for the foreseeable future, there are ways to help you stay connected to your network, while overcoming challenges in managing your personal health.

A women speaking on the phone at home

Buddy up

  • Whether it’s someone in your support network, or a family member or friend, buddy up with someone whom you can rely on and enjoy a (socially distant) chat with.
  • Schedule regular times for you to check-in, so that you have a call or video chat to look forward to. Shift.ms, a global social network for people living with MS, is a helpful resource to stay connected with others in the MS community, and hear from others who may have had similar experiences as you.
A woman going for a walk

Try to stretch

  • It’s important for anyone living with MS to have regular physical activity, but at your own pace. Find time throughout the day, even if it’s just once, to move and gently stretch your muscles and joints.
  • This can be as simple as extending your arms up and down over your head or by your side, or rotating or bending your legs, either sitting or laid down.
  • The National MS Society published an illustrated brochure with tips for the MS community on stretching.
A man bonding with his dog

Relax and be kind to yourself

  • Depending on your disease progression, it may be difficult to practice common relaxation techniques or routines.
  • But don’t worry, setting out your day however works for you, eating well and getting plenty of sleep are simple ways to relax.
  • Try taking a few moments out of your day to take a deep breath and reflect on your week.
  • While this may seem obvious, it’s important to be reminded that it’s normal to take a break for yourself, especially during these uncertain times.
Working on the computer

Check MS organisations for available resources

  • There’s a number of MS organisations that offer the latest information on the current health situation, as well as helpful resources on ways to cope and connect during this time.
  • The MS International Foundation has a list of resources, including videos and webinars on topics such as coping with uncertainty of COVID-19, available to support you from the comfort of your home.
A man checking in with his doctor, virtually

Talk to your healthcare team

  • Remember, you can always speak to your doctor or nurse if you have any concerns about your health or the current health situation.
  • Many healthcare professionals are moving to video or telephone appointments to accommodate patients who may not be able to come into the office.
  • Check in with your own healthcare providers to find out how services are operating in your area.

Every day, new information emerges to help health officials better see the full picture of this pandemic, what it means for people living with diseases like MS, and how to manage and treat it.

This World MS Day, we want to help you to stay connected not only to each other, but also to reliable and helpful resources as we journey through these unprecedented times.

Share with others in the community how you’re staying connected using #MSConnections.

Tags: Society, Patients, Multiple sclerosis