Air Hunger in MECFS Explained (it's not what you think)

I've been working a lot this past month on Pillar 3 of recovery (supporting the body), focusing on things like nutrition, sleep, movement, and hormonal balance.

And by the way — yes, my recovery is an ongoing process of maintenance. The same tools I used to get well across the four pillars, are the tools I continue to apply to my everyday life.

It’s my belief that achieving remission is not enough. We MECFS warriors must continue to deepen our relationship with the pillars in order to create a full and lasting recovery. And the greater your capacity becomes, the greater your ability to go deeper into each pillar rises to meet it. 

Last year, I was working heavily on the expansion/contraction cycle (Pillar 2), and that work created new space for me to return to Pillar 3 — namely, by having greater reserves for strength training in the gym.

Which brings me to my story for today! 

Yesterday, I was working out when I caught myself breathing heavily from cardio — in that incredible way that once felt completely out of reach. I stopped, took a deep, beautiful breath, and nearly cried.

It’s been three years, yet I still remember when air hunger was one of the most terrifying parts of ME/CFS for me.

For nearly two years, I couldn’t take a full, satisfying breath. I constantly felt like I wasn’t getting enough air — like I was being suffocated — even though my oxygen levels were completely normal.

That's why, this week, in my love letter to the MECFS community, I want to talk about air hunger, in the hope that I can put your mind at ease if you’re dealing with it too.

First: air hunger is not anxiety. 

Of course you feel panicky when you can’t breathe deeply — that’s a normal response. But that doesn’t mean this is a panic attack. This isn’t your chest tightening because you’re anxious — if anything, it’s happening almost in reverse.

For me, the sensation felt like a suction cup pulling my breastbone backward. During PEM, inflammation across my rib cage made it unbearable. Quite honestly, I couldn’t even wear a bra.

I had all the scans. I did all the tests on my heart and lungs. And to my utter shock — everything came back normal.

So what… the heck… was actually happening?

Well, let me tell you.

In ME/CFS, the autonomic nervous system is often dysregulated — meaning the body can get stuck in a chronic threat response, which changes how we breathe.

To my surprise, I learned that air hunger usually isn’t about oxygen — it’s about carbon dioxide (CO₂) tolerance. 

The brain uses CO₂ levels, not oxygen levels, to regulate breathing. When CO₂ tolerance drops, the brain sends a constant signal of “I need more air,” even when oxygen levels are fine. Low CO₂ tolerance is a result of autonomic dysfunction — a classic issue in ME/CFS.

When someone has low CO₂ tolerance, their brain becomes highly sensitive to even small increases in carbon dioxide. That means breath-holding, physical exertion, or even emotional stress can trigger symptoms like lightheadedness, air hunger, or palpitations.

Over time, this reactive breathing reinforces the very patterns that keep the nervous system stuck in a stress loop.

Many people with ME/CFS also experience costochondritis — inflammation of the rib cartilage — due to chronic systemic inflammation and increased pain sensitivity (central sensitization). This can physically restrict chest expansion and amplify the sensation of air hunger.

So we end up with:

- a sensitized nervous system 

- low CO₂ tolerance 

- chest-wall inflammation 

Not so comfy. Not so fun.

My friend — the fear is understandable. But it is not proof that something catastrophic is happening.

And when fear enters the picture, the system can become even more dysregulated, which matters if your ultimate goal is for this symptom to stop.

Because the good news is this: air hunger is not a fixed, permanent state. 

Here are a few things that helped me:

- Seeing normal oxygen levels on a pulse oximeter (this was huge for me) 

- Avoiding forced deep breathing, which can actually make things worse 

- Using gentler signals of safety, like slow 4–7–8 breathing 

- Gently massaging the solar plexus 

The body can respond to intentional, gentle training that helps it become more comfortable with slightly higher levels of carbon dioxide. This does not mean pushing or forcing your way through breath holds or uncomfortable practices.

It means gradually creating safety as CO₂ levels rise a little — which helps regulate oxygen use, calm the nervous system, and restore balance.

When you understand this as a nervous-system regulation issue — not anxiety, not a heart attack, not impending death — the fear itself often begins to loosen.

And with the right tools, this symptom can improve.

Mine did.
It’s completely gone.

I still remember the first time I yawned after nearly two years — the first deep, satisfying breath. I cried with relief. But it didn’t happen by accident. I had to learn when to work with my body — and when to stop trying to force it.

Those lessons, my friend, live inside my ME/CFS recovery program, The Edison Effect. Right now, we’re between cohorts, but the Self-Study version remains available until the next cohort opens in May.

When symptoms are misunderstood, fear quickly becomes fuel for the fire. But when you understand what’s actually happening, you can help put out that fire.

And now you know. I hope knowing helped you snuff out a few flames today.