How I Actually Recovered from MECFS

 If you've been in the recovery space, and have had the capacity to pay attention, then you've probably noticed that recovery falls into "camps,” where groups or people sort of pedal an approach as the solution to MECFS.

These camps fall into:

1. Pacing Programs: (The main idea is that pacing is how we keep ourselves from worsening, and some can get better or even recover using this approach).

2. Brain/Limbic Retraining Program: (The main is idea is through retraining our limbic brain we can regulate our sympathetic and parasympathetic response, thereby seeing cascading changes onto the other systems that have a role in homeostasis).

3. Functional Medicine: (The main idea is that by treating viruses, mold, tick-borne illnesses, detoxing, and supporting our cellular functioning through supplements, meds and diet we can heal).

4. Trauma Informed Healing: (The main idea is that trauma holds the nervous system hostage, and that by healing it and doing a ton of somatic, work we can regulate our body back into homeostasis and recover).

These programs may mix more than one of these four together, while others do ONE extremely well. But most of them believe that 1 out of 4 is the name plate of recovery. And the REASON that this dichotomy exists... is because guess what? Folks DO see a ton of progress implementing these tools. And when one works really well they often think it's THAT tool that is THE tool. When in reality, long lasting recovery usually involves all four, even if they're not taught all in one place or utilized at one time.

These 4 points, or as I call them "pillars" were the foundation for how I created my recovery, and later on, "The Edison Effect MECFS/LC Recovery Program". My work does not rely on a one-method-approach for everyone. It breathes space into bio-individuality, finds work arounds for everyone, and is heavily based on the neuro-immune science of MECFS.

We focus on building a “recovery house”, one habit at a time. And when you're very sick, we pick and choose which pillar to lean into first, in order to see the most gains. Then, we reinvest the new energy it brings back into recovery, reassess what to do next, and repeat.

So no, I don’t live in a recovery "camp." I think a lot of damage has been done to our community by the purist brain-retraining camps, who when in the hands of some coaches, can act as an element of gaslighting and even teach folks to override the body as it sends signals of danger, instead of working with those signals and honoring the body’s limits as you send new messages of safety.

But I also think there has been great damage done by the hyper-vigilant pacing camps, who scream from the rooftops that you're always one crash away from complete ruin; that brain/limbic retraining is trying to paint this illness as “all in your head” and that it is a bunch of fluff and nonsense.

Both seem in such opposition to each other. But through my recovery and research, I came to see they are not.

And that’s because:

Pacing as an embodied way of living does not cause you to go into fight or flight

But pacing as an amygdala-driven way does, and it can cause you to crash harder and more.

Brain retraining as a way of reconditioning the bi-directional nature of crashes, can be an amazing tool in restoring homeostasis, because of the power of neuroplasticity. But brain retraining as a form of self-gas lighting and always going beyond your energetic limits, will cause you to boom or bust. It can definitely make you worse.

So ok - FINALLY, here we are. How then, did I recover?

I recovered by finding the intersection of pacing and limbic/brain retraining, and built my recovery around that meeting place, while adding in the two other pillars to restore balance to my body and reversed engineered the cycle of crashes and PEM.

I started by figuring out how to determine if I was stuck and stable, in boom or bust, or actually recovering. Getting out of boom or bust came first; finding my baseline and understanding what it meant to be at baseline etc came next. I learned how to track and what to track to actually move me forward and not keep me in hyper-vigillance.

Next, I learned about the physiology of crashes and MECFS and what is actually happening in the immune, endocrine, cellular and autonomic nervous system. Learning the science of MECFS took a lot of my fear away and helped me gain control.

Then I began to do everything I could in my severe state to retrain my nervous system (knowing a ton about neuroscience from my previous walk as a caregiver to someone with a severe TBI and seeing firsthand how plastic the brain is), to appropriately respond to stimuli and activity again. Tons of bottom up and top down processing came into play.

Once my body began to have a little bit more energy, I learned how to not use it all up in a burst of joy or excitement, and if I did (which happened a lot because, come on, we’re human), how to respond differently to the crashes to help my system recover. I learned how to truly PACE; and not just to cope with the illness in which my baseline would stay stuck for years, but how to expand my baseline and level-up.

Mindfulness meditation was a way I learned to recondition my body to sit up, work with my POTS, reverse central sensitization, and develop the patience and the embodied sense of being that I needed, in order to hear the messages of my body, rather than push beyond them.

As time progressed, I began to see my baseline as what I now call in coaching a “soft fence” that I could play with, and I learned how to play with it in a sort of flowing series of expansions and contractions, that were gentle and led by my body, (not my mind or anxiety).

I learned how to work with my exercise intolerance not against it, using science based techniques I got from an MECFS exercise physiologist. We built a movement plan that began with range of motion exercises in bed and over a year, had me walking 45 min aerobically. She showed me how to rebuild my mitochondria without overexerting myself. (It should be said, I sought her out).

As my capacity expanded and I could tolerate supplements, I worked on supporting my body to remove mold and heavy metals. I worked up to tolerating sauna and stretches, always reinvesting the dividends of each new expansion back into recovery. If I could cook a meal, I cooked a meal that would get the most nutrients into my cells. I restored sleep with sleep training which had a cascading impact on everything else.

Finally, I began to dig deeper into how I viewed myself and the illness; reshaping my relationship with it entirely. I had a lot of trauma to unpack before I could unpack the trauma of the illness itself. I needed to work on maladaptive behavior traits that would get in the way of recovery; people pleasing, boundry-less living, and pushing/achieving as a way to be seen and validated. (This is the pillar I am still working on every day btw).

Slowly and surely, my body and mind recovered, but rather than a "fix" or a "cure,” the journey back to health felt more like a restoration of balance; a balance I lost very long ago before MECFS ever even showed up.

And that balance now is my “North Star” - every day guiding me by and by back home to myself.

In summation, the four pillars by which most programs pick ONE and then tout as "the answer" in recovery, all came together in my own. And so it has been for the 250+ people I have coached since.

And so today I want to share with all of you, newbies and long-held friends, that my program can empower you to become the captain of YOUR recovery ship.

Ultimately it is my belief that you know far more than I ever could about your body and what it needs. But what I offer is a way of understanding which pillar you need NOW, in order to see progress, and how to work the other pillars in as you progress, so that you KEEP seeing progress.

THAT is the KEY. Not the pillar, but the PROCESS.

I understand that when you’ve been sick for ages, the idea that anyone might recover feels like it has to be a lie or a fluke, but recovery was the most INTENTIONAL thing I have ever done. I am rooting for you always and in all ways.