New research highlights the challenge of measuring a condition that affects people in very different ways.

For years, many people living with Long COVID have found themselves in a difficult position.

They know something has changed. Their energy is different. Their ability levels are different. Their recovery is different. Activities that once felt easy now require planning.

Yet their symptoms don't always show up clearly in standard tests, appointments, or medical records. “Your heart looks good” is a typical clinical evaluation that doesn’t help explain the heart rate spikes people experience. Others may have symptoms dismissed by others who say “you're just getting old” or “it’s probably just a change in hormones". However, you know your body and that the changes were too rapid, too different from how you know your body should feel.  

A recent study from Mass General Brigham suggests that Long COVID may be significantly more common than current healthcare data indicates. Using artificial intelligence to analyze medical records, researchers estimated that many cases are going unrecognized by the systems typically used to track the condition. In fact, they found that roughly 1 in 6 people who had COVID-19 may have developed Long COVID, with millions of cases potentially missing from current surveillance methods.

While this research doesn't change what someone experiences day to day, it does highlight an important point:

The absence of a diagnosis code is not the same as the absence of a condition.

Long COVID has always been challenging to define because symptoms can look very different from one person to the next. Fatigue, cognitive challenges, dizziness, shortness of breath, exercise intolerance, sleep disturbances, and many other symptoms can all be part of the picture.

We know from first hand experience of the health care system that it does many things brilliantly, but often struggles to support people with complex multi-system conditions. It is wise to learn from the experience of people with Chronic Fatigue and other conditions. People will risk loosing years of productivity, personal connections and joy by looking for a strictly clinical solution - we don’t want to see that happen when effective options are available. 

At ThriveNinety, this is one reason we focus on supporting people to take steps that are in their control to achieve the outcomes they want for their daily life, rather than waiting for the health care system to change or develop other options.   

Statements we hear from people we work with include: 

“Within 4 weeks I can tolerate activity better.”

“When I have symptoms they are more mild than they were.”

“My crashes have become less frequent and when I do crash I recover much more quickly.” 

“I can commit to doing things I love because I’m more confident I’ll have the energy I need and be able to do them.” 

These are personal and meaningful signs of progress, even when science is still working to understand the full scope of the condition.

Research helps us better understand the problem. Recovery often starts by working with the things we can influence today.

One thing you can do this week:
Take a moment to notice one area where your capacity has improved, even slightly, over the last few months. Small changes are easy to overlook, or to take for granted, but they often tell an important part of the recovery story - and they are a reminder that progress is possible.

We invite you to keep it simple and start with the three free tools we share with our community to help them get started. 

Warmly,
Katie & Andrea

PS: Recovery isn't always visible in a test result. Sometimes the most meaningful changes are the ones you notice in everyday life.