Can Myalgic Encephalomyelitis Be Cured With Neuroplasticity?

A Special Blog and Call to Action

Since I don’t frequent social media, I have remained unaware that some of the concerns surrounding claims that neuroplasticity-based strategies are a cure for ME were being connected with my name or my program Healing Through Neuroplasticity: Pathways to Pain-Free Living.

Something happened to me recently that has prompted me to clarify my opinion and call for change.

In this special blog post, I will

• Describe the incident that occurred.
• Clarify my view of neuroplasticity and neuroplasticity-based practice.
• Make a call to action to curiosity, research and respect.
  
  

The Trigger Incident

A few months ago, a prominent research non-profit organization approached me, asking whether I would be willing to sit on the board of directors. I agreed because I feel it is important to give back and because I wanted to support an organization I respect and that has enabled research that is increasing our understanding of ME.

After my board position was made public, the organization received emails from three Canadian ME support groups protesting my appointment. Although I don’t know who made the complaints or exactly what was said, I was told the concern was the perception that I support neuroplasticity as a cure for ME. If true, the complainants viewed this as antithetical to the bio-medical focus of the organization.

Without anyone fact checking my beliefs (I have many videos online that discuss them), I was asked to resign to protect the organization’s reputation. I was told that even if the concerns were unsubstantiated, the organization needs to protect its reputation from any perception that it views neuroplasticity-based treatments as credible.

So why am I writing about this incident?

It is not because of hurt feelings on my part. The complainants were clearly unfamiliar with my beliefs or practices. It is not because of ill feeling towards the organization in question which is making immense contributions to the field of ME and which I support whole heartedly.

I am writing this blog because what happened to me is only one example of many, many such incidents in which people (patients, clinicians and researchers) are being bullied and hurt by a small, vocal group of patient advocates who criticize any conversation unacceptable to them. The cause of the intolerance is understandable—the dismissal and invalidation of patients with ME continues to this day.

However, turning the tables on others including those who believe neuroplasticity-based strategies may be worth utilizing and investigating will not heal this hurt—it will increase it. I hope that my naming intolerance as a serious problem may be a small step towards decreasing it and encouraging mutual respect.

Points of Clarification

1.  I Understand the Fear that History May Repeat Itself.

a. I understand the anger and animosity of people with ME towards anything they perceive as supporting a psychological etiology of ME.

b. I lived through the years when the cognitive behavior therapy (CBT) and graded exercise therapy (GET) research dominated. Those were not good years.

c. For many years, I felt insulted every time a paper was published that was dismissive of my suffering – suffering I believed was purely bio-medical and not likely to respond to any cognitive or mind/body intervention.

d. I have provided psychotherapy to hundreds of patients harmed and traumatized by a medical system that offered little but disbelief and blame.

e. Ironically, I spent decades arguing publicly against mind/body approaches for ME. Then I tried one and experienced benefits - my multiple chemical sensitivity (MCS) improved with Dynamic Neural Retraining System (DNRS), and now I’m experiencing a cultural backlash for going public with this.

2.  Is Neuroplasticity Scientifically Proven?

a. Neuroplasticity is defined as the change in brain structure and function as a result of mental experience. In this definition, the term “mental” includes thoughts, feelings and behaviors; any type of lived experience (Doidge, 2007).

b. Neuroplasticity is a well-accepted biological process, with over 54,400 peer-reviewed papers in Medline (OVID) (a search of the terms neuronal plasticity and neuroplasticity conducted through the University of Calgary online library on August 26, 2024).

c. The first objective research evidence that brains could rewire as a result of lived experience occurred almost 100 years ago. Dr. Paul Bach-y-Rita, in the 1960s, was one of the first researchers to show that a purposeful intervention in humans resulted in measurable changes to the connections and function of neurons. To read his publications, go to (https://www.researchgate.net/scientific-contributions/Paul-Bach-y-Rita-75345859)

d. There are now many studies showing with functional MRI evidence that changing lived experience has a measurable effect on neural circuits in animals and humans and that these changes affect human disease states (Doidge, 2015; Merzenich, 2013).

3. What Is the Mechanism Behind Neuroplasticity?

a. The first law of neuroplasticity, “what fires together wires together,” was attributed to Canadian Donald Hebb in 1949 (https://en.wikipedia.org/wiki/Hebbian_theory). This law, still accepted today, tells us that whatever we repeat over and over, whether intentional or not, will lead to changes in neuronal wiring.

b. Neuroplasticity is thought to play a significant role in chronic pain, including fibromyalgia, through a process called central sensitization. A meta-analysis of fMRI data clearly shows changes in brain function in people with chronic vs. acute pain (Yarns, Cassidy, & Jimenez, 2022). These changes are due to neuroplasticity.

c. Luckily, neuroplasticity allows us to unlearn old habits or symptoms and learn new ones throughout the lifespan.

d. Just like learning to speak a language or recover from a stroke, learning new daily habits to impact symptoms is not a quick fix. It requires about 1 hour of practice daily.

4.  Is Neuroplasticity a Cure for ME?

I do NOT believe neuroplasticity-based practice is typically a stand-alone complete “cure” for ME.

However, I have found neuroplasticity-based practice to be a powerful tool for many symptoms commonly experienced by people with ME, including pain and sensitivities.

●  I practice neuroplasticity-based strategies most days and continue to experience improvements in my physical and mental health.

●  Many people with ME and co-morbid conditions have reported significant improvements with neuroplasticity-based practice. Their experiences deserve validation. Instead of questioning whether they really had ME to start with, I am curious to learn more about what they did to improve.

●  Most people who experience improvement using neuroplasticity-based practice do so in the context of comprehensive self and medical management.

5.  A Call to Action—Let’s Make this a Turning Point.

The truth about neuroplasticity-based practice is that it is somewhere on the very large continuum between being a scam and a cure. Like every other treatment, there are mixed results, with some getting better, some getting worse, and some staying the same.

To repeat what I said at the start, what happened to me is about more than the people and organizations involved and is about more than neuroplasticity-based practice. It is about intolerance of different opinions. Here is my call to action:

a. Let’s support research on neuroplasticity-based practice and other controversial treatments to determine whether they work and, if so, for whom, for what symptoms and in what circumstances.

b. Let’s approach the unknown with curiosity and courage.

c. No group of patients has the right to dictate what will and what will not be appropriate for other patients. Let’s not repeat the wrongs of the past in which people’s lived experiences were invalidated.

d. Let’s treat each other with respect, even if, and perhaps especially if, their experiences differs from ours.

If you are someone who, like me, wants to help bring our community together, please email me directly at [email protected].

Let’s open the conversation and use the power of collaboration to find comprehensive science-based solutions for the horrible suffering of ME.

References

Doidge, N. (2007). The Brain that Changes Itself: Penguin Books.

Doidge, N. (2015). The Brain's Way of Healing. New York: Viking.

Merzenich, M. (2013). Soft-Wired: Parnassus Publishing.

Yarns, B. C., Cassidy, J. T., & Jimenez, A. M. (2022). At the intersection of anger, chronic pain, and the brain: A mini-review. Neuroscience & Biobehavioral Reviews, 135, 104558. doi:https://dx.doi.org/10.1016/j.neubiorev.2022.104558