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    POTS and ME Awareness: A Surprising COVID-19 Outcome
    Chronic IllnessMightier Together

    POTS and ME Awareness: A Surprising COVID-19 Outcome

    by Ariela Paulsen January 6, 2021January 6, 2021
    written by Ariela Paulsen

    Throughout the COVID-19 pandemic, the prevalence of COVID-19 “long-haulers” has baffled doctors and researchers.  Some patients, regardless of age or severity of COVID symptoms, never fully recover.  They continue to have crushing fatigue, brain fog, shortness of breath, headaches, racing heart rate, and an inability to exercise, even to climb a few stairs.  For some of these long-haulers, most of whom are women, things start to improve after a few months.  Many, however, are still waiting for improvement.

    While these symptoms may seem baffling to those studying the virus, they are strikingly familiar to many of us in the chronic illness world.  They are the very symptoms that have been plaguing the often-overlooked 1% of the population suffering with Postural Orthostatic Tachycardia Syndrome (POTS).  Historically, POTS takes years to diagnose, largely because so few doctors are familiar with it.  Patients with these symptoms are often brushed off as anxious or just out of shape.  Like the COVID long-haulers, POTS patients are mostly women, and tend to range between 15-50 years old.  

    This connection was recently made public by Prof. Lauren Stiles, founder of Dysautonomia International (and POTS patient herself). Our understanding of POTS can now help to improve the conditions of the millions of patients suffering from long-term COVID-19.  More than this, the widespread education and awareness about POTS that has resulted could mean that the many more patients who have been fighting to make their condition understood for decades can now receive better care.  And perhaps new patients experiencing these symptoms in the future won’t have to wait the average 5+ years before nailing down a diagnosis.

    A condition closely linked to POTS, although even less well acknowledged in the medical community, is Myalgic Encephalomyelitis, formerly called Chronic Fatigue Syndrome (ME/CFS).  For an in-depth look at the history, patient experience, and current challenges surrounding this highly-stigmatized condition, I highly recommend you watch Jennifer Brea’s stunning documentary, Unrest.  Like Jennifer Brea, many patients with ME/CFS also carry a diagnosis of POTS.  Because research is so limited, it is still unknown what the connection is between these diseases, as well as with other common comorbidities such as EDS, MCAS, CCI, and fibromyalgia.  

    What we do know, is that millions of people are suffering from conditions that have been historically stigmatized, under-researched, and dismissed.  On July 9th, Dr. Anthony Fauci publicly stated that “post-COVID syndrome” is “highly suggestive” of ME/CFS and that more research into this condition needs to take place.  Such a high profile, respected physician may have finally given a final push to the efforts by patients around the world and organizations such as MEAction. 

    The coronavirus pandemic has been devastating, and we will continue to feel its effects for years to come.  If it leads to better research and care for the vast number of people already suffering from POTS and ME/CFS, this will at least be a source of hope and positive change for the future!

    With an incredibly dedicated medical community now exploring options to help COVID-19 long-haulers and those suffering from POTS and ME/CFS, the Mighty Well team hopes we will see astounding medical advancements for the chronic disease community soon!

    Do you have a story about POTS, ME/CFS, or post-COVID syndrome? We’d love to here it in our Friends in the Fight group!

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  • Chronic IllnessFeaturedFriends in the FightThe Undefeated

    Celebrating Our Diverse Brains: Claire Lapat

    by Ariela Paulsen September 14, 2020September 14, 2020

    This week, we are learning about neurodiversity in our community. We sat down with Claire — athlete, college student, and…

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  • Chronic IllnessFeaturedFriends in the FightThe Undefeated

    Celebrating Our Diverse Brains: Rebecca Wexler

    by Ariela Paulsen September 14, 2020September 14, 2020

    This week, we are learning about neurodiversity in our community. We got to chat with Rebecca, a nurse, mother, and…

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  • Friends in the Fight

    My Illness Has Made Me Stronger

    by Emily Pierri June 29, 2017August 3, 2018

    My name is Emily Pierri. I am 17 years old, and I have been chronically ill for 8 years. My…

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  • Friends in the Fight

    A Fighter’s Journey: Living With a Rare Illness

    by Emma Widmar December 1, 2016August 3, 2018

    I’ve pressed the delete button on my keyboard a million times by now… (why you ask) That’s what a writer…

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  • Chronic Illness

    Spoonie Stories: Advocating for People with Disabilities

    by Miranda Diller H. October 5, 2016July 9, 2018

    Miranda has 68 formal diagnoses including Ehlers Danlos syndrome, Dysautonomia, POTS, MCAD and Gastroparesis. Here is her story.Miranda has 68…

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Hi, We're Mighty Well.

The mission of Mighty Well is to help patients and their caregivers turn sickness into strength. We are leading the global charge that changes the perception of patients from victims to fighters. We do this by improving the experience of being a patient. We create the products we wish we’d had: functional and stylish apparel and accessories that you can wear with confidence - and content that can help you get through the good times and the bad. It’s wellness you can wear.

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CHRONIC ILLNESS

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Mighty Well - Founder - Emily Levy - Our Story

 

It all started with a cut off sock, a cute hockey player, and an 8 AM finance class. Oh, and a PICC Line. That moment inspired us to launch our first product, the PICCPerfect PICC Line Cover.

 

We know it stinks to feel defined by a diagnosis or feel like just a name on a doctor’s chart. Sounds like you? Read how our founder turned sickness into strength.

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