Deepening the Conversation in MS: How Patients and HCPs can Work Together to Increase Dialogue Around “Invisible” Symptoms of the Disease

The Daily Impact of MS-Related Fatigue

Multiple sclerosis, or MS, is a chronic, neurodegenerative disease in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS).¹ The resulting inflammation caused by the immune system’s attack on the CNS damages the myelin (the insulating layer or sheath) that surrounds the nerve fibers.¹ This damage can produce a variety of symptoms, ranging from physical symptoms such as numbness and vision loss to “invisible or hidden” symptoms like fatigue.² In fact, within the first year of diagnosis about 80% of people will MS will experience fatigue. ³

While most people have felt fatigued at some point in their life, MS-related fatigue goes beyond just feeling tired and often interferes with a person's ability to perform everyday activities. According to a recent global survey conducted by Janssen Pharmaceuticals*, while 90% of MS patients reported bringing up their fatigue during exams with their HCP, more than half (56%) felt their HCP did not fully understand the overall impact that fatigue has on their daily lives.⁴ These findings demonstrate a need to deepen certain aspects of the patient-HCP conversation, especially when discussing effects of the disease outside of lesions.

According to MS patient and advocate Teresa Wright-Johnson, living with MS-related fatigue is a constant struggle. Speaking from her personal experience, she notes that “there are moments when lifting one’s head feels arduous and instances where rest, relaxation, and sleep do little to eradicate the fatigue.” The patient is often left feeling perpetually exhausted. Wright-Johnson has experienced times when her exhaustion is such that, despite resting in bed, she is unable to recover enough to take care of household duties or her personal obligations. Furthermore, her fatigue can affect her cognitive function to the extent that thinking becomes difficult and forming a sentence is laborious at times.

Yet, this daily struggle is not always apparent to the outside world. There are no signs that someone is dealing with MS-related fatigue.⁵ In the words of Wright-Johnson, “Put simply, unless you walk in the shoes of someone with MS and live that life from day to day, it is difficult to fully comprehend the struggle and the strength and the resiliency it takes to move forward.”

Broadening the Conversation About Fatigue

For HCPs looking to help address the impact of MS-related fatigue, Wright-Johnson suggests creating an open environment starts with a simple question: How can I help?

From a medical perspective, Dr. Maria Ait-Tihyaty states that it starts by “listening to what symptoms the patient is experiencing and how those symptoms are affecting their lives.” Patients know how they feel and creating an environment during visits where that reality can be communicated honestly is crucial. According to Wright-Johnson, these types of conversations are only possible if a relationship built on “trust, transparency, and empathy” has been established with an investment from the HCP into the patient dialogue.

According to Dr. Ait-Tihyaty, pharmaceutical companies and researchers also need to play an active role in increasing awareness and providing research and support to strengthen conversations between HCPs and patients around the effects of MS-related fatigue. This role includes offering patient-friendly apps that can help patients communicate their fatigue to their treating physician quickly and efficiently with a scoring system that would allow the HCP to track the patient’s fatigue easily. With the necessary tools and information to effectively track patients' MS-related fatigue, HCPs can gain a better understanding of its pathophysiology and more effectively respond to the challenges that fatigue creates.

When open dialogue exists between the patient and their HCP, Dr. Ait-Tihyaty observes that statistics, like the ones highlighted in the Janssen global patient survey, can be tailored to the individual “allowing for a more accurate picture to be formed and for specific solutions to be explored.”

Making a Difference in MS-Related Fatigue

The varying nature of the symptoms, severity, and duration of MS-related fatigue from patient to patient further highlights the value of a personalized approach to visits and treatments.² As HCPs, it is essential to make clear that although all the patients’ symptoms may not be visible, their effects are recognized and real. Living with MS-related fatigue is hard. Those impacted know this firsthand. They face a reality where the constraints of their fatigue impact almost all aspects of their life. By putting patients first and creating clinical environments where they feel comfortable sharing both the highs and lows of their daily struggles, HCPs can help to alleviate part of the burden MS-related fatigue causes.

For more information on MS-related fatigue, visit www.MoretoMS.com , an educational online resource that provides tips for patients and caregivers managing MS and its varying symptoms.

* The survey included 1,300 adult patients with MS living in the U.S., Germany, Canada, France, the UK and Italy.

1. National Multiple Sclerosis Society. Definition of MS. Available at: https://www.nationalmssociety.org/What-is-MS/Definition-of-MS. Accessed January 13, 2021.
2. National Multiple Sclerosis Society. Multiple Sclerosis FAQs. Available at: https://www.nationalmssociety.org/What-is-MS/MS-FAQ-s. Accessed January 4, 2021.
3. National Multiple Sclerosis Society. Fatigue. Available at: https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Fatigue#section-1. Accessed January 22, 2021.
4. Janssen Pharmaceuticals. Global Patient Fatigue Survey. 2020. Available at: https://www.janssen.com/sites/www_janssen_com/files/1140-01_msfatiguesurveyinfographic_9.9.20.pdf. Accessed January 4, 2021.
5. Rocky Mountain MS Center. Daily P. MS & Invisible Symptoms. Available at: https://www.mscenter.org/education/publications/informs/161-informs-winter-2017/784-now-you-see-it-now-you-don-t-ms-invisible-symptoms. Accessed January 4, 2021.