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Disclaimer: Nothing I share is medical advice and is for informative purposes only.
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Frequently Asked Questions (FAQs)
I get asked this a lot. 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 Dynamic Neural Retraining System (DNRS) by Annie Hopper.
In my detailed written review of DNRS, I explain what DNRS is, what I did before it that was very important for me personally, and compare other neuroplasticity programs. Please also read this before considering a neuroplasticity program.
For people who can’t afford DNRS, they have a donation request form. Here are some CFS specific success stories. They have multiple Long Covid recovery stories, too, now up (go to the category column).
DNRS does not resonate with everyone. Some people prefer additional or different methodologies to support and heal their nervous system (see toggle below).
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 or say them aloud, start small and do it in your head. 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 type of 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.
Release trauma and the TMS approach
Dr. Sarno was a pioneer in the relationship between trauma, its impact on the nervous system, and chronic illness/pain. His theory is coined Tension Myositis Syndrome. By sharing this, I do not mean to imply that all people with ME/CFS have experienced major trauma or that one has to have had a major trauma to benefit from this modality.
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. Another main component of the TMS approach is “knowledge therapy” for reprocessing pain and symptoms to change how we interpret and respond to them.
See Rebecca Tolin’s CFS recovery story – TMS Success Story. Rebecca goes into detail about TMS, which was the main aspect of her healing. If you’re interested in the latest science behind TMS (some cool research was recently published), check out the links at the bottom of my interview with Rebecca.
Also, see Vanessa’s CFS and POTS recovery story (YouTube interview) who also used the TMS approach to heal (she also did DNRS, finding both approaches helpful).
The Curable app is a mobile application inspired by the TMS approach, backed by a team of neuroscientists, and I’ve heard good things, especially for healing chronic pain.
Addressing the spinal cord
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. I’m not suggesting all people with ME/CFS have spinal cord issues (your spine could be fine).
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 (like Jeff Wood) fully recovered after surgery to address this, including but not limited to 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 (the latter had her spinal cord untethered). However the surgery does not come without side effects and risks (Jeff himself discusses several).
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 potentially affect how your body reacts to stressors like exertion, and that this could be a driver for certain people’s ME/CFS.
That said, surgical intervention (untethering spinal cords from spine, fusing spinal bones, etc.) is typically reserved for extreme cases, and this is still a new terrain. I know of one person who spinal bone fusion made their ME/CFS worse, one person who kept needing repeat spinal cord untethering surgeries, someone who surgery didn’t help much (probably not relevant, but this person had pre-existing brain chemical imbalances prior to ME/CFS), and one person who saw significant improvement but who still had some symptoms. I haven’t done a deep dive to provide an accurate analysis, and I am not an authority on this, however am aware that more people are coming forward about the risks.
I also have known people who had evidence of craniocervical instability who fully healed without surgery, including Christine. Listen to Christine’s story on the Our Power is Within podcast.
Some find regenerative medicine to support the spine and spinal cord to be helpful (note: this type of medicine is still a new field).
Some have tried targeted gentle physiotherapy helpful for supporting their upper cervical stability and cerebrospinal fluid flow. Recently, I have heard about the Perrin Technique. It is based on Dr. Raymond Perrin’s theory that “different stress factors whether physical, allergies, emotional, or infections lead to an overstrain of the sympathetic nervous system.” Dr. Perrin believes this nervous system overload is being perpetuated by a build up of toxins in the cerebrospinal fluid.
The Perrin Technique includes a combination of cranial and spinal osteopathic techniques and massaging of soft tissues in the head, neck, and back to drain the lymph fluid. I am not endorsing this, just providing information.
A friend of mine recently told me about Lydian Chiropractic in Boston, who have a technique called the Axial Stability Method, which she personally found supported her ability to recover faster from exertion. The Axial Stability Method is a precise, gentle, low-force technique that that work to restoring the structural stability of the core of the body. It’s intended to increase bio-mechanical efficiency, which can help return the body to homeostasis.
Osteopaths and chiropractors are not a cure all or magic fix, and while can be very helpful for certain people, the bulk of our health seems to be supported by what we do (or don’t do) everyday outside the office.
(Friendly reminder: Nothing I share is medical advice nor endorsements.)
What I wish my younger self knew: You won’t find someone who has your exact same symptoms at the exact same levels. It’s statistically impossible.
That said, I myself know it’s inspiring to find recovery stories from people who were in a similar boat as you.
My former symptoms (all recovered from):
I had many symptoms including reactivating EBV, severe brain fog, a limbic response to mold (didn’t discover it until over 2 years in), swollen lymph nodes (almost always), post-exertional crashes (lasted 3 to 40 days, on average 10), dizzy and out-of-breath from sitting to standing (more-so in the first year), cardiac symptoms including chest pressure, chest pain, and heart racing (more common the the beginning and during or right before crashes), feeling of constricted breathing (in the first year), Day 1 of the flu feeling most of the time (much worse during crashes), air hunger episodes (may have been anxiety), anxiety caused by not knowing what was going on with my body, light sensitivity (much worse during crashes), chemical sensitivities, blood sugar dysregulation, caffeine and sugar sensitivity (zero tolerance), temperature regulation issues, sweaty most nights (just a light sweat though), hair loss (an annoying symptom – the drain was constantly clogged), nasal passages constricted most nights, in the beginning food passed through undigested (my gut felt broken, and I wasn’t getting energy from food, so I saw a gastro), a brief episode of depersonalization a few weeks after a colonoscopy (no issues were found in the colonoscopy, but the procedure triggered a 3 month period of very severe IBS and severe fatigue and malaise which leveled off to a more moderate level), a few times I had hand and arm tingles, one time my entire body started shaking (went to the ER, no answer), one time my skin turned yellow/green and I had a scary cardiac and digestive episode (went to ER – friend was scared, no answer), cramping in hands from light cleaning, mouth and throat stuff/issues, extreme thirst 24/7, extreme muscle weakness, my organs hurt, and inflammation. I had good days and bad days, and within single days symptoms would fluctuate. My general baseline was about 20-30% functionality.
I do not respond to messages asking me to compare symptoms, it’s not enjoyable, and I have a lot of other priorities. Just know that most people with CFS/ME and related conditions (dysautonomia, Long Covid, CIRS, etc.) have at least one totally random symptom – you are not uniquely broken and there is hope for healing.
While our triggers and specific symptoms might be different, there is growing evidence that the root of dysfunction is the same (our nervous system) and the foundations of health are similar. If I had to go back, I wouldn’t have so much focused on finding people with my exact same symptoms and what supplements they took or what “fixed” them.
I rather would have looked at their approaches on a more holistic level, the manner in which they applied any method or program, and their personalities / life situations, to see if their approach was a fit for me. That said, I would probably be skeptical of someone telling me this. It’s something I had to learn after going about it the wrong way for close to 3 years.
My main focus is creating scalable, accessible materials for ME/CFS recovery. I’m currently a new mom and not taking new mentees.
I love getting messages from people. Here’s how I prefer to help:
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.
If you’d like to learn more about something related to my healing journey, please read this first.
Note: I know you’re the strongest person in the world. Instead of detailing symptoms, medical information, personal challenges, and specific triggers, I ask people to use solution focused language. I appreciate your understanding, 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 specific symptoms
– Ask me to compare my former symptoms with your current ones.
– Email me expecting me to give you a quick fix for a symptom or a situation in your life. (I’m not a medical professional, nor trying to sell you a miracle potion, nor can fix your life.)
No emotional dumps, please. Example: Here are my struggles, personal conflicts, my medical trauma, and my family trauma. No one understands. You remember how terrible it was right? Please validate how terrible my life is and give me a quick solution over Instagram. [I feel ya, but I don’t have enough time or emotional bandwidth to adequately respond to these kinds of emails.]
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?