Can People with Complex Chronic Diseases Recover?

The question of whether it is possible to recover from complex chronic diseases like myalgic encephalomyelitis and long COVID is both important and controversial. It affects how our community responds to new information and influences individual actions.

So often, when someone with ME or long COVID reports substantive recovery, their diagnosis and personal integrity are questioned. The doubts are often associated with a focus on the biomedical/biochemical aspects, which seem difficult or impossible to change. For example, if one has test results indicating genetic variants increasing the risk of disease, high levels of man-made toxins in the body, multiple chronic infections, exposure to toxic mold, autonomic dysfunction and immune dysfunction (and this is far from an exhaustive list) and one has been severely ill for years or decades without any glimmers of progress, it is difficult to believe that improvement is possible unless and until medical research delivers new treatment methods.

While this reasoning seems valid based on conventional medical thought, an increasing number of people report significant improvements, nonetheless. There are now several podcasts devoted to documenting recovery stories. Many people report that their recovery began by watching these interviews and gaining hope and courage to change their daily regimes. It is unlikely that all the people recovering have been mistaken about their diagnosis or are lying about their recovery. Too many people are getting better.

How Mindset Affects Behavior

Belief about whether recovery is possible affects individual actions. If I think recovery is possible, I am more likely to seek out and be open to information from people who have improved. I may try new things, and this could increase my chances of shifting my health. If it worked for others, why not me?

Conversely, if I think recovery is not possible, I am more likely to dismiss information that comes my way about potential treatments and live my life in the same old ways. Why would I spend valuable energy on research and new strategies if I believe improvement is not possible?

Can People with Advanced Cancer Recover?

If you remain doubtful that it is possible to recover because ME, FM, ES, long COVID, MCAS, POTS, etc., are hard-core, biomedical conditions that will not respond to unproven lifestyle interventions, let’s compare ME to cancer, a condition whose biomedical credentials are impeccable.

Would you be surprised to learn that many people with end-stage cancer recover? End stage generally refers to stages 3 & 4 cancer in which the cancer has spread beyond the organ in which it originated. In her book Radical Remissions, psychologist Dr. Kelly Turner describes the most common strategies used by over 1000 survivors she interviewed. She has since extended her research to over 1500 people.

Dr. Turner was motivated to study remission after observing doctors showing a surprising lack of curiosity when their patients reported unexpected improvements. She couldn’t understand why the doctors weren’t more interested in understanding when one of their patients beat the odds and recovered.

This dismissive attitude may be due to something called confirmation bias. We all develop certain beliefs and mindsets, e.g., “ME is biomedical and will only respond to a biomedical intervention.” Once we have a belief, there is a strong tendency to look for evidence that confirms what we believe rather than evidence that would disprove it. For example, if someone tells us there is a large pink elephant in the room and we don’t believe in pink elephants or the importance of pink elephants, we may not be curious or interested even if it sits on us. A real-life example is interviews of people who almost died of SARS-CoV-2 infection, reporting they did not believe COVID 19 was a serious infection.

In her research, Dr. Turner found some common themes among late-stage cancer survivors. I am listing them here to give you an idea of what the survivors believe helped them. These strategies may not all be suitable for ME and other complex chronic diseases (e.g., the vegetarian diet) or for you as an individual, but there is a lot of wisdom in this list. You will notice that all of the strategies are self-management strategies that do not require a prescription, a medical practitioner, or a big financial investment. None are high-tech.

Nine Lifestyle Factors Reported by Cancer Survivors:

1. Taking Control of Your Health
   Becoming proactive in decision-making about treatments and lifestyle changes.
2. Following Your Intuition
   Listening to gut instincts to guide choices about treatments and life priorities.
3. Having Strong Reasons for Living
   Finding purpose, meaning, or goals that inspire and motivate survival.
4. Radically Changing Your Diet
   Eliminating processed foods, sugar, and animal products while emphasizing whole, plant-based foods.
5. Using Herbs and Supplements
   Incorporating natural remedies to strengthen the immune system and overall health.
6. Increasing Positive Emotions
   Cultivating joy, gratitude, and love to boost mental and physical resilience.
7. Releasing Suppressed Emotions
   Addressing and letting go of deep-seated anger, resentment, or trauma.
8. Embracing Social Support
   Building strong connections with family, friends, and community for emotional upliftment.
9. Deepening Your Spiritual Connection
   Engaging in practices like prayer, meditation, or connecting with a higher power.

To learn more, check out Dr. Turner’s books Radical Remission and Radical Hope. I found them both to be page-turners. Over the years, I have suggested them to many people struggling with cancer, and all have resonated with the hopeful, empowering message.

Can You Recover from Myalgic Encephalomyelitis?

Podcast host Raelan Agle has interviewed almost 200 people who report having improved or fully recovered from ME and related conditions. I interviewed Raelan on June 6, 2024, to ask her what the recovered people attributed their improvement to.

She summarized the most common strategies employed by people with ME who have significantly improved. Even though cancer and ME are different diseases, you may notice some overlap between her list and that of Dr. Turner. Again, people named self-management strategies much more often than medication or high-tech, expensive solutions.

1. Addressing the basics of supporting the body by
• getting enough sunlight, hydration, sleep and a healthy diet;
• managing stress in whatever way works for you; and
• having connection, joy and love in your life.
2. Regulating the autonomic nervous system, including
• understanding that not all physical symptoms are a sign of danger,
• understanding that not all physical symptoms are a sign of structural damage,
• understanding that emotions affect physical symptoms and resolving strong emotions can help healing.
3. Developing a hopeful mindset, including
• having a belief that recovery is possible,
• accepting our current circumstances,
• deciding to make recovery a priority,
• practicing self-compassion.

Could Quantum Biology Hold the Key to Healing?

Over the past 200 years, much more time has been spent studying what makes people sick than how people recover. So, how do people recover even after years of severe illness? What happens at a biological and cellular level?

Many of you know that I’ve been fascinated and excited by quantum biology of late. It is an emerging field that provides an understanding of phenomena that biochemistry and classical physics cannot explain—things like how enzymes work, how DNA mutations happen, and how animals return from migration to the same field, lake or tree year after year without a GPS. Quantum principles are explaining more and more of these miraculous phenomena. Could quantum principles help us understand how healing works?

Quantum biology research suggests that portions of mitochondria, like the electron transport chain, function in quantum ways. Mitochondria are not only responsible for producing energy but also for communicating information throughout the body. It is believed this communication may occur instantaneously through the quantum entanglement of electrons and protons.

Can I Explain My Personal Improvement?

I have fully recovered from a lifetime of MCS. The shift happened within a few days of beginning neuroplasticity practice, and really, if I’m totally honest, it happened in less than 30 minutes. I began practicing some exercises for a few days. Then I went to the mall and walked in front of the scented soap store while overriding my habitual response, and nothing happened. I repeated the same experiment the next day, and again, there was no sensitivity reaction. How could this happen so suddenly after 50 years of symptoms that had failed every other strategy I had tried?

My biochemistry didn’t change. I know this from repeated lab testing. Neither my genetic susceptibility nor my high body load of toxins, my chronic infections, hypermobility, autonomic dysfunction or immune dysfunction changed, yet my body functions differently now than before. It no longer reacts to smells by generating symptoms. Classical biochemical understanding can’t explain this sudden rapid change. Importantly for me, the improved resilience has been maintained for over 10 years.

Could quantum biology explain how severe chronic symptoms could shift quickly? If we make some of the lifestyle changes Turner and Agel suggest, and some mitochondria sense the positive change, could they communicate this to the rest of the body instantaneously, causing more and more mitochondria to come back online and produce the energy needed to heal? And could this initiate a positive cycle in which more mitochondria reboot, leading to more improved function and more mitochondria resuming full function, etc.?

This is a very speculative hypothesis, one that I have no ability to test. In my worldview, everything has a biomedical basis, including thoughts and emotions. I believe there has to be a biological explanation for the increasing spate of partial and full recoveries being reported. Nothing happens by magic.

Stay tuned to this space, where I’ll update you as I learn more. I will endeavor to avoid confirmation bias and report just as faithfully if my ideas turn out to be false as if they are supported by research.

6 Recovery Tips

Here are some final thoughts based on what I have learned from my own experience and that of thousands of patients whose stories I have had the privilege of hearing over the past 25 years.

1. We are all different. No matter how much research you do, your path to improvement will be unique. Do your research and then rely on your intuition for direction.
2. You can’t get better doing the same things you were doing when you got sick. To heal, you have to be willing to make some big changes, such as the changes Dr. Turner and Raelan Agel have reported.
3. The mind and body are both intimately involved in healing. Be open to a wide range of strategies.
4. You need to believe recovery is possible—otherwise, you won’t do the things necessary to allow your body to heal, and the energy you create with your thoughts will not be coherent with health. I know this sounds pretty “woo woo,” but the evidence is strong—the mind and body are one, and the mind affects the body in measurable ways.

How to figure out where to start?

1. Listen to accounts of people who have recovered. Find some with whom you can relate, and then, if it feels right for you, try some of the things they did.
2. Join a solution-focused community and learn from those who are improving (e.g., my Live! with Dr. Stein community).

Start somewhere, take baby steps, and share your successes to pay it forward.