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MS

Giving MS patients a digital sense of community

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Through the creation of BelongMS, people living with Multiple Sclerosis around the world are being supported in new and innovative ways. Its co-founder and CEO, Eliran Malki, shares the reasons for its foundation and the impact it is delivering

People who live with a chronic medical condition are often faced with a difficult choice: succumb to the condition or be proactive in managing it. Evidence shows that where sufferers are actively engaged, they maintain better mental health, which in turn has a positive effect on their physical health. The challenge is knowing where to turn to get the support that is best suited to their unique condition.

 

How Did it All Begin?

When a close family member of mine was battling cancer a few years ago, I realized something was missing in the way patients and caregivers manage the illness journey. Partnering up with two friends in a similar situation, we founded Belong.Life and our first app, Belong-Beating Cancer Together was created. What started out as us three entrepreneurs working out of a garage, has organically grown to be the largest cancer network in the world, with users in over 100 countries. Belong.Life now seamlessly connects patients and their caregivers with peers and medical professionals, all via an app on their phone.

Following the success of Belong-Beating Cancer Together, we started building the same platform for the Multiple Sclerosis (MS) community –BelongMS. Around 2.3 million people live with MS worldwide; the disease attacks the central nervous system and can cause varying symptoms, such as extreme fatigue, problems with vision or balance and gaps in memory. Lifetime costs for a patient in the US have been estimated to exceed $4 million, creating a deep need for access to the latest information about treatments.

Too often, patients are left with only technical resources at a time when they really need personal support. This is not a criticism of healthcare providers, but rather a reflection of the pressures in the health systems around the world, driven by the number of patients and budget concerns. We wanted to counteract this issue and improve the quality of life and quality of care for patients through connecting with others by leveraging our patient engagement insights and extending our proven machine learning technology to provide effective support for patients across the healthcare continuum.

How Belong is Connecting the MS Community and Ecosystem 

BelongMS is a free and anonymous AI-powered social networking and navigation platform for multiple sclerosis patients, caregivers and healthcare professionals. The app offers support groups and direct access to medical professionals, including neurologists, radiologists, urologists, and others who can answer patient questions. When opening the app, every user sees a personalized feed according to their  specific medical diagnosis, interests, situation and challenges. The app also provides useful tools, including a medical binder manager to store and organize medical records in one place, with the option to share them securely and privately with family members or physicians. A clinical matching trial feature is available as well, utilizing Natural Language Processing (NLP) algorithms to analyze all available trials around the globe to match patients within two weeks, on average – we’ll dive into that soon. 

Ultimately, BelongMS provides MS patients and their caregivers a safe meeting place where they can learn more about the condition, get updates on the latest treatments, and support each other. As the platform is entirely anonymous, it allows for completely open communication without any feelings of embarrassment or shame.

After launching in May 2020, we are very proud that BelongMS is now the world’s largest social and professional network for multiple sclerosis patients, with over 100,000 users in the US alone and more around the world accessing and gaining support from the app. 

The Belong Clinical Trial Matching Service 

Clinical trials play a major role in MS research, while also providing patients with access to the latest treatment technologies. They have been instrumental in the development of new drugs for patients with MS and participating in a trial helps both current and future patients dealing with the same disease, making it an essential step forward in increasing the range of treatment options.

However, finding a relevant trial can be challenging. The sheer volume of available clinical trials for MS can prove overwhelming for many physicians and patients and many available clinical trials databases present complex criteria explained using medical language, making it hard for humans as well as existing Natural Language Processing (NLP) technologies to analyze them. Even well-informed patients face challenges with the technical language used and the very granular nature of the inclusion and exclusion criteria. This leaves many patients unaware of the trials that could be their best hope for a cure or remission and a high number of trials critically under-enrolled.

In addition, MS patients often face another hurdle. Some of them find it hard to concentrate over time, and many of them experience some cognitive difficulties (AKA ‘cog fog’ among MS patients), making it tough to digest the vast amount of information found within the clinical trials databases. 

BelongMS already helped ~2,000 patients find relevant clinical trials relevant, and while our AI technology does 95 per cent of the heavy lifting, our clinical trial coordinators consult with the users in order to  develop the final short list that meets the individual’s preferences and needs, such as inability to travel significant distances. 

Current achievements in the treatment of MS are mainly based on the outcomes of clinical trials that demonstrated valuable results in treating a disease which has an unpredictable course. As treatment options for MS broaden, future clinical trials will continue to incorporate new strategies to identify novel therapies and pathways of intervention, for the betterment of the MS community – Belong is honored to be a part of this journey.

In Conclusion

BelongMS is helping MS patients and caregivers all over the world to understand the treatment journey through reliable, professional and customized information. We’re providing an opportunity for the MS community to become proactive and participate in their own medical care. Our platform is not only improving patients’ quality of life but reducing the workload of doctors and hospitals by helping patients navigate their treatment journey with more independence. We hope to continue empowering patients and caregivers on their MS journey to manage their condition proactively and enjoy life to the maximum.

 

Eliran Malki is the co-founder and CEO of Belong.Life, developer of the world’s largest social and professional networks for cancer and MS patients and healthcare professionals. A tech entrepreneur with experience in big data and high throughput analytics, Eliran previously founded three tech companies and transformed them from ideas into successful businesses and exits. Eliran’s focus is improving access to life-saving information, allowing patients and caregivers to better navigate the treatment journey and improving the quality of life for people battling diseases.

Belong.Life  develops social and professional networks for managing diseases, patient journeys and communities and is the creator of the world’s largest social and professional network for cancer patients (Belong-Beating Cancer Together), BelongMS, BelongIBD (select countries), CoronApp and more. Belong.Life’s mission is to improve the quality of life and quality of care around the world through technology, engagement, data and AI for patient communities, healthcare organizations, pharma and hospitals. The company’s end-to-end solutions encourage the formation of patient communities, and provide care coordination, customized content and advanced management features for users. Delivering actionable insights into patient journeys, Belong uncovers key trends and patterns that can help improve global care.

MS

Herpes virus ‘one of main causes of MS’

Tackling Epstein-Barr virus (EPV) – one of the most common viruses in humans – could lead to MS prevention, researchers say

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A herpes virus has been found to be a leading cause of Multiple Sclerosis (MS) in a new study. 

MS affects 2.8million people worldwide, and one of its causes has been found to be the Epstein-Barr virus (EBV), which is one of the most common viruses among humans. 

“The hypothesis that EBV causes MS has been investigated by our group and others for several years, but this is the first study providing compelling evidence of causality,” said Professor Alberto Ascherio, professor of epidemiology and nutrition at Harvard Chan School and senior author of the study. 

“This is a big step because it suggests that most MS cases could be prevented by stopping EBV infection, and that targeting EBV could lead to the discovery of a cure for MS.”

MS is a chronic inflammatory disease of the central nervous system that attacks the myelin sheaths protecting neurons in the brain and spinal cord. Its cause is not known, yet one of the top suspects is EBV, a herpes virus that can cause infectious mononucleosis and establishes a latent, lifelong infection of the host. 

Establishing a causal relationship between the virus and the disease has been difficult because EBV infects approximately 95 per cent of adults, but MS is a relatively rare disease and the onset of MS symptoms begins about ten years after EBV infection. 

To determine the connection between EBV and MS, the researchers conducted a study among more than 10 million young adults on active duty in the US military and identified 955 who were diagnosed with MS during their period of service.

The team analysed serum samples taken biennially by the military and determined the soldiers’ EBV status at time of first sample and the relationship between EBV infection and MS onset during the period of active duty. 

In this cohort, the risk of MS increased 32-fold after infection with EBV but was unchanged after infection with other viruses. Serum levels of neurofilament light chain, a biomarker of the nerve degeneration typical in MS, increased only after EBV infection. 

The findings cannot be explained by any known risk factor for MS and suggest EBV as the leading cause of MS.

Prof Ascherio says that the delay between EBV infection and the onset of MS may be partially due to the disease’s symptoms being undetected during the earliest stages and partially due to the evolving relationship between EBV and the host’s immune system, which is repeatedly stimulated whenever latent virus reactivates.

“Currently there is no way to effectively prevent or treat EBV infection, but an EBV vaccine or targeting the virus with EBV-specific antiviral drugs could ultimately prevent or cure MS,” said Prof Ascherio.

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MS

MS treatments ‘may reduce effect of COVID vaccine’

Some DMTs could reduce the effectiveness of vaccines, a study finds, meaning ‘all possible measures’ must be taken so people with MS feel safe

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Treatments used to help people with multiple sclerosis (MS) manage their condition can reduce the effectiveness of COVID-19 vaccines, a new study has found. 

Disease-modifying therapies (DMTs) are a group of treatments for people with MS and affect the immune system. As vaccines work by triggering the body to produce an immune response, it was suspected that some DMTs could reduce the effectiveness of COVID-19 vaccines.

The study provides the largest peer-reviewed, published evidence of the effect of DMTs on immune responses to COVID-19 vaccines. 

Researchers, from Cardiff University and Queen Mary University of London, said they hoped the new insight will better equip clinicians to provide guidance to people with MS on treatment options.

“People with MS have faced uncertainty during the COVID-19 pandemic as a direct result of their condition and the treatments they take to manage it,” says Dr Ruth Dobson, clinical senior lecturer in neurology at Queen Mary.

“Our study provides high-quality evidence that will support clinicians to advise people with MS on treatment options considering the COVID-19 pandemic. 

“However, further trials are essential to help us understand how best to balance the risks of potentially suspending or delaying MS treatment with the need to effectively vaccinate people with MS against COVID-19.”

The research team studied almost 500 people with MS and used a technique known as dried blood spot sampling to investigate the effects of DMTs on COVID-19 vaccine effectiveness. This approach reduced study costs as well as the need for potentially vulnerable patients to attend the clinic during the pandemic.

The findings show that people with MS taking either of two particular DMTs, fingolimod and ocrelizumab, were less likely to produce antibodies in response to AstraZeneca and Pfizer vaccines than people with MS not taking any DMT. 

If they did produce antibodies, the levels were lower than those found in people taking other DMTs, or not taking any DMT at all.  

However, the researchers found that other DMTs, including some that are highly effective for MS treatment, had no detrimental effect on COVID-19 vaccine response.

Immune cells, such as T-cells, are also an important part of the immune response to vaccines or viruses. The researchers studied T-cell responses in a small group of study participants who failed to mount an adequate antibody response to COVID-19 vaccination. They found that overall, 40 per cent of this group were able to produce a strong T-cell response, despite having a poor antibody response.

Dr Emma Tallantyre, clinical senior lecturer in neurology at Cardiff University, says: “Questions about the COVID vaccine are among the most common we are currently facing from people with MS in our clinics. 

“Highlighting groups who have mounted an inadequate COVID vaccine response has already been helpful in guiding who should receive additional doses of the vaccine, and who may need to continue to take additional infection-prevention precautions over the winter. 

“We hope further work will allow us to individualise our management, to protect people with MS from Covid, while keeping their MS under control.”

Dr Clare Walton, head of research at the MS Society, adds: “While this doesn’t mean these patients are necessarily at higher risk of severe illness if they catch COVID-19, it will be worrying for some. 

“It’s vital that people with weakened immune systems are better supported to protect themselves from the virus, including a right to work from home and feeling assured that the general public are doing everything they can to help keep them safe. 

“We also advise people with MS on these DMTs not to alter their treatment without speaking to someone from their MS healthcare team.”

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MS

Sunshine ‘can help protect against MS’

New research shows exposure to sun in children and young people can help reduce their risk

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Exposure to sunshine for children and young adults may protect against multiple sclerosis (MS), new research has revealed. 

In questionnaires filled in by 332 participants with MS or their parents, 19 per cent stated that they spent less than 30 minutes daily outdoors during the previous summer, compared to six per cent of those who did not have MS. 

When the researchers adjusted for MS risks, like smoking and female sex, they found that the participants – aged between three and 22 – who spent an average of 30 minutes to one hour outdoors daily had a 52 per cent lower chance of MS, compared to those who spent an average of less than 30 minutes outdoors daily.

“Sun exposure is known to boost vitamin D levels,” said co-senior author Dr Emmanuelle Waubant, professor in the UCSF department of neurology and of the Weill Institute for Neurosciences. 

“It also stimulates immune cells in the skin that have a protective role in diseases such as MS. Vitamin D may also change the biological function of the immune cells and, as such, play a role in protecting against autoimmune diseases.

“Advising regular time in the sun of at least 30 minutes daily especially during summer, using sun protection as needed, especially for first degree relatives of MS patients, may be a worthwhile intervention to reduce the incidence of MS.”

The study follows previous work by other researchers that has demonstrated an association between increased ultraviolet exposure in childhood and lower odds of adult MS. The positive impact of sunshine has also been shown in a host of other conditions, including Long COVID.

While MS usually strikes adults between the ages of 20 to 50, statistics show that up to five per cent of the one million patients in the United States with the condition begin experiencing symptoms in childhood. 

Paediatric-onset MS is initially highly inflammatory, but takes longer than adults to advance, with symptoms of secondary progression, such as moderate to severe weakness, poor coordination and bowel and bladder control, occurring on average 28 years after disease onset, according to experts. 

However, these disability landmarks are reached approximately ten years earlier than in adult MS.

The researchers also found an association with the intensity of sunlight and estimated that residents of Florida would be 21 per cent less likely than residents of New York to have MS. 

They noted that sun exposure was “dose-dependent,” the longer the exposure the lower the risk. And even exposure in the first year of life seemed to protect against MS, they said.

Clinical trials are needed to determine if “increasing sun exposure or vitamin D supplementation can prevent the development of MS or alter disease course post-diagnosis,” said Professor Waubant, also director of the UCSF Regional Pediatric Multiple Sclerosis Center.

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