Issue #2
On our Radar
Taking your Time
The Story: For chronic fatigue, a strategy called ‘pacing’ helps, but at a cost.
What is ‘pacing’?
Pacing is an strategy for combating chronic fatigue that requires patients to carefully limit their daily activities, reduce their energy expenditure, and track their symptoms. Think hacks like creating water and snack stations around the house to reduce trips to the kitchen. It is being active when you’re able, resting when you’re tired, and giving yourself permission to not push through symptoms.
What’s the upside?
A study on different treatment approaches to chronic fatigue syndrome found 'pacing' to have the highest reported benefit to patients (up to 82% of patients) -- far above cognitive behavioral therapy and graded exercise. Anecdotally, patients with Long COVID are experiencing similar benefits.
What’s the downside?
If you were previously accustomed to leading a busy, active life, pacing can sometimes feel like a loss -- especially for doing things you love, like: cooking, walking the dog, or socializing with friends. The trick can be to not cut these things out completely, but instead schedule in things that bring you joy, just in smaller doses or with certain shortcuts.
What’s Flaring
How a new tool might help diagnose autoimmune disease sooner…
A new, fully automated technology called PMAT may improve the early diagnosis of connective tissue diseases, particularly lupus and Sjögren’s syndrome. According to a new Italian study, a novel particle-based multi-analyte technology (PMAT) has been developed that can test for 29 autoantibodies simultaneously. By testing for the presence of multiple antibodies at the same time, researchers were able to demonstrate more diagnostic efficacy than testing just individual antibodies or just antibodies that make up the classification criteria for a specific disease.
Why it may get cheaper to have some of your prescriptions filled …
Amazon announced the launch of a $5-a-month prescription plan. RxPass, a new Prime membership benefit, will enable patients to get unlimited medications for a flat $5/month fee -- with free delivery. However, this plan only covers 60 common generic prescription drugs, and many drugs used to treat invisible illnesses -- like Hydroxychloroquine or Prednisone -- are not covered.
On our Reading List
Nobody has my condition but me ... one patient's winding journey to a one-of-a-kind diagnosis.
Why do weather changes make my pain worse? ... a deep dive into the scientific evidence behind why our flares can be worse this time of year.
Make 2023 the year of prioritizing women’s health ... a blueprint for how to move the needle on women’s health and health care.
Questions to ask and avoid when talking chronic illness ... an immediate text and forward to all our friends and family members.
The most helpful thing a therapist has ever told you ... some bite size wisdom we can't get enough of -- especially in the comments section.
Spoon theory: What it is and how I use it to manage chronic illness ... an amazing comic that captures daily living with a chronic illness.
Who We’re Following
@chronicillnesshumor is where we go when we just need a laugh.
Isn't there someone out there that said that laughter is the best medicine? 😬
