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I recently got rid of my contact form, because I've received too many random sales ads.
If you'd like to get in touch or have a question, please first subscribe to my newsletter, click the confirmation link in the confirmation email, and you can reply to my Welcome email.
Check out the FAQs below on how you can phrase any questions (through any platform) in a solution-focused way.
While I've been there and detail my own experiences on my blog, your understanding helps me be able to help others in a sustainable way.
If you are a researcher or would like to collaborate / share your wisdom,
please email me at hi [at] healwithliz [dot] com.
Disclaimer: Nothing I share is medical advice and is for informative purposes only.
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Frequently Asked Questions (FAQs)
Scientists have found neurological differences in people with CFS/ME, including glial cell hyperactivity, nervous system excitotoxicity, and sympathetic nervous system over-activation.
The program I did to help nudge my body out of sympathetic “fight, flight, or freeze” mode and into parasympathetic “rest and digest” mode is called the Dynamic Neural Retraining System (DNRS) by Annie Hopper. It explains how biological threats and trauma can injure the brain. It’s based on the hypothesis that post-acute illness and hypersensitivity to environmental stressors is perpetuated by injury to the brain’s limbic system and that we can use our imagination to – overtime – help calm and rewire our physiological responses.
It’s inspired by the science of neuroplasticity, which is how stroke patients and injured soldiers regain mobility after brain injury. It is not about ignoring your body or “pushing through.”
The program itself is more friendly than it sounds (neural retraining sounded intense to me – it’s more like a framework to tap into sensations of calmness and vibrance), though it involves time commitment and consistency. For me personally, I benefited from doing multiple other things before it and other things in conjunction with it to heal, which I write about on my blog.
In my detailed written review of DNRS, I explain what DNRS is, what I did before it that was important for me personally, explain available add-ons like individual and group coaching (& my thoughts on them), and talk about other neuroplasticity programs like ANS Rewire.
For people who can’t afford DNRS, they have a donation request form.
For me personally, it was helpful to identify my triggers (physical, biological, mental, etc.) and remove myself from an unhealthy environment before beginning DNRS. But in my opinion (not health advice) having a perfect environment isn’t necessary or practical (and can in some cases have drawbacks).
Before I began DNRS, I was in a frame of mind where I was open to a new approach. I also had a great deal of earned knowledge about pacing, where I really allowed my body to lead the way when it came to physical activity. I also think reading certain books before starting DNRS were helpful for me personally (see recommended books in a toggle below). DNRS does not resonate with everyone. Some people prefer additional or different methodologies to get into a parasympathetic state.
Here is a video where I give a bit more glimpse of what DNRS is:
Note: DNRS requires you to set boundaries with others about certain things. It also requires you to set time for yourself with your family. One parent I know drew a cute sign on her door that says “Mum in brain training” when she’s doing her DNRS ’rounds.’
My quick bit of advice for DNRS: If you decide to do DNRS, take as long as you need to watch the instructional videos (I know someone who took 3 weeks). If you don’t have the mental stamina to do a full hour of DNRS visualization rounds, start small. Do rounds even if you can’t come up with anything new, your imagination will begin to grow. Doing it on rougher days counts double. The turtles win the race.
Friendly disclaimer: No neuroplasticity program is a substitute for medical advice or your own intuition.
Here are three other approaches for calming/reseting the nervous system to support healing, besides neuroplasticity. There are other things helpful for healing besides supporting the nervous system. This is not medical advice. You should consult a trusted and experienced medical professional before making any health decisions.
Dr. Jay Goldstein was an early pioneer of the theory of CFS/ME being a communication problem with the brain, specifically a limbic system injury. He used pharmacological approaches to help reset the central nervous system of his patients to normal functioning, via pathways going to the brain. A blogger named Erica Verillo, not associated with my blog, shares information about Dr. Goldstein’s protocols here.
I did not personally take a pharmaceutical approach (it also wasn’t presented to me by the doctors I happened to see). While some drugs help some people, there isn’t one drug yet known to help all people who meet the diagnostic criteria of CFS/ME.
It could likely be there are different subgroups who will respond to different things, based on pathways of dysfunction, genetics (for instance one’s genetically determined ability to break down certain enzymes), and presence of other organic acids in the body (which can potentially interact).
OMF-funded researchers (led by Dr. David Systrom) are currently studying a parasympathetic nervous system activating drug for potential ME/CFS treatment. Alternately, another team (led by Dr. Lucinda Bateman) is studying a drug to overstimulate the sympathetic nervous system, which actually is thought to have the after-effect of helping return the nervous system to homeostasis.
Dr. Sarno was a pioneer in the relationship between trauma, its impact on the nervous system, and chronic illness/pain. His hypothesis is called Tension Myositis Syndrome. Not all people with ME/CFS have experienced major trauma.
Dr. Sarno’s approach, which involves releasing trauma, is different than regular talk therapy, which for some people can exacerbate stress and PTSD. Furthermore, people who have experienced major trauma can find first doing things to calm their nervous system beneficial before doing work to process and release trauma. See Vanessa’s recovery story as a recent example.
The incidence of spine issues (from scoliosis to craniocervical instability) are suspected to be more prevalent in people with ME/CFS compared to the general population.
Thanks to the persistence of former ME/CFS patient Jeff Wood who solved his own case (here is his blog) hundreds of people with ME/CFS have since discovered they had a spinal cord injury (caused by craniocervical instability aka CCI, brainstem compression from misaligned spines, and tethered cords). Some have significantly or fully recovered after surgery to address this, including famous ME/CFS director and advocate Jen Brea and (what a coincidence) a nice girl who went to my high school one grade below me who was formerly wheelchair-bound from ME/CFS.
That said, surgical intervention is typically reserved for extreme cases. Some find regenerative medicine and targeted gentle physiotherapy helpful approaches for supporting their upper cervical stability and cerebrospinal fluid flow. [This is not medical advice, just an observation.]
Jeff writes about his 100% health recovery story on his blog and wrote this great article on Health Rising: Could ME/CFS be a Chronic, Ongoing Brain and Spinal Cord Injury – That is Exacerbated by Exertion?
It certainly makes sense that something poking into your brainstem or aggravating your spinal cord could affect how your body reacts to stressors like exertion.
I am not a coach. I also have boundaries about what I discuss with subscribers.
My main focus is creating scalable, accessible materials for ME/CFS recovery.
If you’d like to learn more about something related to my healing journey, please first read the ‘how to phrase questions’ below. Suggestions for what you want to learn more about are helpful and appreciated so I can continue to create relevant materials for my blog and other channels.
I love getting messages from people. Here’s how I prefer to help:
I know you’re the strongest person in the world. Instead of listing symptoms, personal challenges, and triggers by name, I ask people to focus on the end goal you’d like to see or use a silly euphemism.
I appreciate your creativity, so that I can continue to enjoy what I do in a sustainable way. Just know this is about me, and it’s not personal.
With deep understanding about the challenges of ME/CFS, I ask people NOT to:
– Detail symptoms or triggers in our communication. (You can use funny euphemisms to clue me in. Or you can say what your desired health goal is. I’ll likely know what you mean.)
– Ask me to compare my former symptoms with your current ones.
– Ask me details about my medical history beyond what I’ve provided.
– Use the S word that rhymes with buffer. (I prefer “healing from, living with, or on the road to recovery”.) Many wonderful people I know use this term. It’s just my personal preference.
– Discuss personal conflicts or childhood trauma. (You can use goal-focused phrasing instead.)
– Email me expecting me to give you a quick fix for a symptom or a situation in your life. Or email me expecting me to give you medical advice. (I’m not a licensed professional, nor trying to sell you a miracle potion, nor a guru at your life.)
No emotional dumps, please. Example: Here are my struggles, my medical trauma, and my family trauma. No one understands. You remember how terrible it was right? Please validate how terrible my life is. [I feel ya, but these emails can weigh on me.]
Solution-focused messages are welcome.
Here are some of the coaches, medical professionals, and guides who helped along the way. Ultimately, I was the one who healed me. Your “health team” might involve a different order, different people, or just be you, and that’s a good thing.
On April 2021, I launched a Health Recovery Coaches page. It is for informative purposes only, not medical advice, and no money is exchanged.
I encourage you to find what resonates with you. I encourage you to try things when it’s good for you. I encourage you to speak up for your needs and even interrupt any coach/professional to readjust so things are comfortable for you (even if you need to cut a Zoom session short). As a friendly reminder, nothing I share is medical advice.
Sleep Smarter by Shawn Stevenson. He also has a great podcast called The Model Health Show.
The Vortex by Esther Hicks. Some stuff is super woo-woo and a tad self-blamey, but this book is full of brilliant gems. Was a turning point for me for healing and how I show up in relationships.
Healing and Wellbeing Cards by Esther Hicks (a set of flash cards – can’t recommend these enough!).
The Untethered Soul.
The Power of Now by Eckhart Tolle
The Energy Codes by Dr. Sue Morter. Has the best explanation on why bad stuff happens in our life and powerful breathing techniques to release emotions. I didn’t do the yoga stuff in later chapters.
Since healing I’ve also found these books helpful:
The Power of Habit.
*New read* Set Boundaries, Find Peace by Nedra Glover Tawwab.
*New read* The Presence Process by Michael Brown (recommended by a blog subscriber). Amazing so far, I’m halfway through.
Do you have any recommendations to add to the list?