Long COVID: Why Clarity Matters More Than Ever
- ME|FM Society of BC
- Mar 26
- 3 min read
Recently, our Society was involved in reviewing a Long COVID research protocol.
There were several concerns. But one stood out.
The study largely treated Long COVID as a single illness, with a single protocol design for all participants, implicitly assuming that all Long COVID patients have similar symptoms, risks, and responses to treatment.
That assumption is the problem.
Because what we call “Long COVID” is not one condition. It is a catch-all term for a few very different long-term physiological impacts of COVID-19.
Long COVID Reflects Different Underlying Impacts
Long COVID is often used as an umbrella label. That helps with awareness and access to care.
But it also hides what matters most.
In reality, this label includes people with different underlying conditions, which may or may not overlap in any given patient:
Lasting or permanent organ or tissue damage (heart, lung, etc.)
A prolonged or relapsing recovery from the COVID-19 infection itself
The development of a post-viral illness, including ME/CFS or an ME-like condition
These are not the same.
They do not respond to the same treatments.
They do not carry the same risks.
And they should not be researched or managed as one group.
A Real-World Problem
The research protocol we reviewed included an exercise-based intervention.
For some patients, such as those recovering from organ-related impacts, that may help.
For others, especially those with chronic post-viral conditions that include post-exertional malaise (PEM), it could cause serious, potentially permanent deterioration.
The issue wasn’t the intervention itself. It was the assumption of a uniform population when, in reality, what may be appropriate for one group could be detrimental to another.
When We Don’t Make This Distinction
In research, this creates immediate risk: a single protocol may be safe and beneficial for some participants (e.g., those with organ damage) while potentially causing significant, even permanent, worsening of symptoms in others (e.g., those with PEM).
It also distorts the data. Applied to a heterogeneous Long COVID population, a protocol may show a modest overall benefit, while actually helping one sub-group, doing little for another, and harming a third. The result is a muddied message, obscuring both benefit and risk, and making research findings and treatment implications difficult, or even unsafe, to interpret and apply.
This Isn’t Just a Research Issue
This directly impacts patient care.
When clinicians don’t distinguish between patients with organ damage and those with a post-viral, ME-like illness:
Patients can be given the wrong advice
Interventions can push people into deterioration instead of recovery
Care options become inconsistent, confusing, and unreliable
For people living with PEM, this can mean permanent loss of function.
What Needs to Change
“Long COVID” as a label is not enough.
In care:
Do not rely solely on previous diagnoses; re-assess using current diagnostic criteria
Identify the patient’s actual condition, symptoms, and triggers
Clarify specific risk profiles (e.g., exercise intolerance) before recommending treatment
Match care to the underlying physiology, not the category name
In research:
Define study populations clearly, applying diagnostic criteria, not just asking patients what they have
Design protocols around real differences in ability and risk
Publish findings that clearly specify to which patient population they apply
Why This Matters
Looking at what the term “Long COVID” really means is not a theoretical discussion about terminology.
It is about:
Protecting patients and research participants from harm
Producing research that is accurate, clear, and safe to apply in the real world
Enabling care that is targeted, appropriate, and effective
For a deeper look at this issue and what it means for care, research, and patient safety, see our full think piece:
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