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MS Virtual World

By Maytee Ramos
December 11, 2020

Leading a support group during a pandemic has been challenging. First, I was supposed to start my in-person meetings in March in a beautiful auditorium in the lobby of the local hospital. Everything was ready and then, just days before my first meeting, the hospital closed operations in that building as a precautionary measure, and the meeting was cancelled.

I waited a couple of months to see how things would unfold, and it didn’t get any better. COVID-19 cases kept rising, and the hospital remained closed. Not only that, but the National MS Society halted all in-person gatherings until further notice, and all group leaders were asked to avoid in-person meetings.

I finally took a leap of faith and decided to go virtual. But how could I start virtual meetings without members? I didn’t have the chance to recruit members and hold my first in-person meeting. So, I did what everybody else does just for fun. Social media became my best ally.

I advertised on every single platform out there with great results. I have been holding virtual meetings for my group, MS360, on Zoom since May It’s been so much fun that 4 months later, I started a second support group, Puertorriqueños Unidos por la Esclerosis Múltiple, for Spanish speaking MSers. And whenever time permits, I attend a local virtual MS support group as a member – even leaders need support, too!

I take every opportunity I have and participate in as many webinars as I can that different MS organizations have been offering online. I try to stay up to date regarding new resources and breakthroughs and share it with my group members.

Now, the most fun I’ve had so far is definitely engaging in social media. I did the “Instagram Takeover” for Shift.ms. It was so cool to be their host for the weekend. I interacted with people from different parts of the world, answered questions, shared my stories, etc. And I just recently was selected as a “buddy” for their “Buddy Network,” a new virtual program where they match you, “the buddy,” with a newly diagnosed MSer to help him/her get through it.

I was also invited to participate via Zoom as a special guest for an MS Facebook group for Spanish speakers, with members from all over the World. It was a nice experience.

And to my surprise and to my pride, I was just interviewed by Momentum Magazine for an article that will feature in an upcoming issue. Not bad!

Because I don’t have enough things to do and to top it all off, I just launched a YouTube channel called “MS Positive.” It’s so much work, but honestly, I love every aspect of it: from the filming, to the editing, to interviewing people. It keeps me in check and I can pour all my creativity in it.

Pretty much everything has taken place virtually this year. Even the world’s largest MS research conference, MS Virtual 2020, gathered in September to present the progress of the research conducted by clinicians and researchers from around the world.

The National MS Society has also been working really hard, offering weekly drop-in calls for leaders since the pandemic started. Also holding the weekly Ask an Expert webinar series where MSers can join and learn directly from an MS Specialist and ask questions. And the Spanish version, Pregúntale a un Experto en Esclerosis Múltiple webinars are offered once a month for Spanish speakers. All this is live streamed simultaneously on Facebook and YouTube.

The Multiple Sclerosis Foundation (MS Focus), The Multiple Sclerosis Association of America (MSAA), and MS Views & News also have been very active presenting different topics of discussion. I cannot fail to mention the great support available for MSers across social media. The sense of community on Instagram and Twitter among people affected by MS is incomparable. Everybody is going live on Instagram or Facebook nowadays, too, making it more personal and intimate. They live stream chair yoga classes to meditation sessions, or even art therapy. Even doctors have their own YouTube channels, and physical therapists offer physical therapy online. All accessible by the click of a button.

I’ve been staying at home since February and ever since, I have met so many people, I have learned so much, I have discovered talents that I didn’t know I had. And all this through the magic of a computer screen, taking advantage of everything the new MS Virtual World has to offer.

Maytee Ramos

Maytee is a support group leader and vlogger who was diagnosed with RRMS in 2015. Her goal is to help others find the motivation to live their lives to the fullest despite MS. She loves to travel and enjoy a good meal. Follow her journey on Instagram, YouTube and Facebook.

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