MSCOVID19: Using social media to achieve rapid dissemination of health information

Abstract

Background and Objective: : The global COVID-19 pandemic creates an obvious acute health care resourcing and response problem. The different timing of pandemic peak in geographically distinct locations creates a short window of response opportunity. Rapid dissemination of medical information from early affected areas to later ones is therefore crucial to optimise planning. Formulating the best system response for at-risk patient populations is especially complex. People with multiple sclerosis (pwMS) are exposed to long-term immunosuppressive disease modifying treatments (DMTs) and, in theory, could be at increased risk of contracting the virus and developing complications. Social media, such as Twitter, can provide a global platform to rapidly share information and individual experiences. Methods and Results: : This report summarizes the case experience of pwMS with COVID-19 infection in the first month of the pandemic as reported on Twitter using the #MSCOVID19 hashtag. 26 individual cases of COVID-19 in pwMS were reported from Europe and the United States of America. The cases involved a combination of relapsing and progressive MS phenotypes treated with a range of DMT (5 anti CD20 therapy, 4 cladribine, 4 fingolimod, 4 injectables, 3 alemtuzumab, 2 dimethyl fumarate, 2 untreated, 1 teriflunomide, 1 natalizumab). The cases shared present the earliest reported data on outcomes of COVID-19 infection in pwMS. Whilst limited, the cautiously reassuring nature of these early cases assisted in clinical management by allowing neurologists to continuously reassess their approach to DMT management.

COVID-19 and disease-modifying therapies in patients with demyelinating diseases of the central nervous system: A systematic review

“…Overall, the data of 2493 MS patients and 37 NMOSD patients were reported with COVID-19. ( Table 1 , 2 ) ( Sahraian et al, 2020 , Safavi et al, 2020 , Bowen et al, 2020 , Louapre et al, 2020 , Dalla Costa et al, 2020 , Parrotta et al, 2020 , Barzegar et al, 2020 , Ciampi et al, 2020 , Mantero et al, 2020 , Sahraian et al, 2020 , Nesbitt et al, 2020 , Chaudhry et al, 2020 , Castillo Álvarez et al, 2020 , Shalhoub, 2020 , Delbue et al, 2007 , Berger and Brandstadter, 2020 , Maillart et al, 2020 , Ciampi et al, 2020 , Mantero et al, 2020 , Crescenzo et al, 2020 , Mehta et al, 2019 , Maghzi et al, 2020 , Möhn et al, 2020 , Bollo et al, 2020 , Ciardi et al, 2020 , Valencia-Sanchez and Wingerchuk, 2020 , Foerch et al, 2020 , Barzegar et al, 2020 , Chiarini et al, 2020 , Gomez-Mayordomo et al, 2020 , Mallucci et al, 2020 , Giovannoni et al, 2020 , Borriello and Ianniello, 2020 , Louapre et al, 2020 , Aguirre et al, 2020 , Rimmer et al, 2020 , Luna et al, 2019 , Carandini et al, 2020 , Matías-Guiu et al, 2020 , Guevara et al, 2020 , Fernández-Díaz et al, 2020 , Amor et al, 2020 , Fiorella and Lorna, 2020 , Dersch et al, 2020 , De Angelis et al, 2020 , Celius, 2020 , Jack et al, 2020 , Suwanwongse and Shabarek, 2020 , Ghajarzadeh et al, 2020 , Montero-Escribano et al, 2020 , Novi et al, 2020 , …”

Impact of COVID-19 on primary care visits: lesson learnt from the early pandemic period

“…They are being used to monitor the progression of COVID-19 pandemic, to announce public policies and restrictions, to disseminate medical information or health advice, to deliver remote health care, and even to describe the geographic spread of COVID-19 which has been proven very effective. [26][27][28][29][30][31] In Klaten, the government used its official website and Instagram to deliver health messages, policies and monitor progressions. 21 We suggest that they should design an appealing public health poster to encourage people with chronic diseases, specifically hypertension, to see their physicians with masks, face shield and appropriate hand hygiene.…”

Multiple Sclerosis Disease-Modifying Therapy and the COVID-19 Pandemic: Implications on the Risk of Infection and Future Vaccination

“…Seven other cases of COVID-19 infection in patients taking teriflunomide have been reported to the time of this writing, all with self-limiting courses despite continued teriflunomide therapy during the infection in most of them [ 39 – 41 ]. One additional self-reported case with full recovery at home has been described in a paper surveying self-reported cases on social media [ 42 ]. Based on influenza vaccine studies, teriflunomide is unlikely to reduce the protective immune response against the future SARS-CoV-2 viral protein or inactivated vaccine [ 43 ].…”

“…Notably, most patients had normal or only mildly decreased lymphocyte counts at the time of infection except one patient with grade 2 lymphopenia. Two additional self-reported cases with good outcomes after COVID-19 infection were included in the paper surveying social media self-reports [ 42 ]. Based on various vaccine studies, the fumarates do not seem to reduce the immune response against viral vaccines and are not likely to impact immunity against the future SARS-CoV-2 viral protein or inactivated vaccine in non-lymphopenic patients [ 51 ].…”

“…In addition to the two cases mentioned above, six additional cases of COVID-19 infection in patients with MS taking fingolimod have been reported to the time of this writing [ 38 , 41 , 60 – 62 ]. Four additional self-reported cases on Twitter have been reported as well [ 42 ]. All patients recovered fully although a severe course was described in two patients who stopped fingolimod treatment during the infection as mentioned earlier and in one additional patient who improved after delaying fingolimod treatment.…”