Issue #4
📡On our Radar 📡
With POTS on the Rise, Few Can Find Care
The Story: The number of patients with POTS has doubled since the start of the pandemic, but there is a dire shortage of medical professionals who know how to care for them.
What is POTS?
Postural orthostatic tachycardia syndrome, otherwise known as POTS, is a disorder of the autonomic nervous system. Patients typically experience a significant rise in heart rate when standing and symptoms like dizziness, brain fog, fainting, headache, fatigue, and more. A vast majority are initially misdiagnosed with anxiety.
Why is it rising so quickly?
COVID has been the cause of over a million new POTS diagnoses. Studies show that anywhere from 2-14% of people with covid develop POTS, and that number more than doubles for patients with long covid.
So where can POTS patients turn for help?
Waitlists for providers who treat POTS are spinning out of control -- with some topping 2 years for an initial visit. There are some helpful physician finder resources available, but many patients are being forced to turn to each other for support while they wait.
🔥 What's Flaring 🔥
Why Chronic Fatigue Syndrome is not the same as being extremely tired...
A new study found that Chronic Fatigue Syndrome (ME/CFS) is not simply one end of the spectrum of extreme chronic fatigue but a qualitatively different condition. The study compared the risk factors of ME/CFS and severe fatigue in over 40,000 women:
ME/CFS patients were more physically active when young as compared to the Not Fatigued group.
Increasing age was strongly related to increased risk of severe fatigue but not to the risk of ME/CFS.
Obesity was associated with severe fatigue but not with ME/CFS.
High intake of caffeine was associated with reduced risk of both ME/CFS and severe fatigue.
How to know when it's time to change doctors...
Patients are becoming more likely to switch providers if they're not satisfied with their current care, according to a report from Accenture. 30% of patients changed providers in 2021, compared to 26% in 2017, and this trend is especially true among younger generations like Gen Zers and millennials, who are six times more likely to switch. When choosing a new provider, ease of access and difficulties in navigating their care experience outweighed all other factors for patients.
👀 On our Reading List 👀
Resources for Black Patients Living with a Chronic Illness ... six resources for communities of color that need more health information tailored to them.
Current Treatments for Cramps aren’t Cutting It. Why aren’t there Better Options? ... yes that little blue pill could become the secret to making our periods more bearable.
I Experienced Bizarre Neurological Symptoms for Years Before I Finally Got a Diagnosis ... an all too familiar patient story that hits close to home in laying out the challenges of a long diagnostic journey.
Can Food be Medicine? ... after nearly forty years of obscurity, the “food is medicine” movement is having a moment.
Gluten-free and Dairy-free Chicken and Dumplings ... we've been loving this cozy soup recipe that also meets a lot of our dietary restrictions.
What Not to Ask Me About My Long COVID ... a relatable guide that transcends chronic conditions.
Bethenny Frankel Opens Up About 'Battle' with POTS Syndrome: 'I'm Not Doing That Great ... stars (or real housewives), they're just like us.
📢 Who We're Following 📢
@theChronicallyHonest captures what we are all thinking and feeling as spoonies.
Her beautiful illustrations highlight the real-life experience of chronic illness.
