Debunking Myths About Chronic Conditions

Myth 1: Exercise Benefits Myalgic Encephalomyelitis
When I learned I had ME in 1997 (it took from 1989 when I became ill until 1997 to get a firm diagnosis), my first reaction was to buy a pair of new runners so I could exercise my way back to health. Exercise had always been my way of regulating my mood and feeling well, so I reasoned it would work for me again. I’m sure you can imagine how badly that turned out for me. But I’m pretty stubborn. It was only after being beaten down by repeated futile attempts to exercise more that I was willing to listen to the advice of an experienced ME clinician who taught me how to pace.

I bought a wearable tracker (Polar chest strap heart rate monitor) and learned the discipline of slowing down and resting every time my heart rate got too high (for me >120 beats/minute). When I opened my medical practice focusing on ME, FM and MCS, I taught pacing to my patients. And it helped—not everyone gets better from pacing, but it stops the push-crash cycle that is so physically and psychologically debilitating.

While all this was going on for me and my patients, the advocates of graded exercise (GET) as a therapy for ME continued to publish papers purporting benefits. As a result, when my patients applied for disability supports, they were often forced into ill-conceived graded exercise programs. They inevitably relapsed, often becoming far more disabled than before the exercise therapy. Then, when they discontinued the therapy due to the crash, they were cut off from their disability supports for not following medical advice. It was predictable and horrible to watch.

Does Exercise Benefit Myalgic Encephalomyelitis?
So, what has changed to bust this myth that exercise is helpful for fatigue and post-exertional malaise (PEM) in people with myalgic encephalomyelitis? We now have three lines of evidence:

• research measuring the cellular causes of fatigue and PEM;
• a diagnostic test for PEM; and 
• the infamous PACE study, which proposed exercise as a cure for ME, was discredited.

Bench Research
We now know that the fatigue and PEM experienced by people with ME, CFS and long COVID is associated with mitochondrial dysfunction. When cells have insufficient energy or too many free radicals to function safely, the mitochondria enter a hibernation-like, low-energy state often referred to as the cell danger response (CDR). They do this to protect us. We cannot exercise our way out of this state. Until the mitochondria sense they and their neighbors are safe, they stay geared down and send chemical messengers to surrounding cells, letting them know of the danger.

Clinical Testing
Staci Stephens, Mark Van Ness, and their team at the Workwell Foundation developed a protocol that differentiates people with ME, CFS and long COVID who have PEM from people who are tired or deconditioned. Their two-day cardiopulmonary exercise test (CPET) compares the values on the first and second consecutive days of identical testing. In healthy individuals and those with decreased capacity due to heart and lung disease, it is the norm for peak exercise capacity to differ less than 8% on repeated tests. Many people with ME show a decline in performance on the second day of more than 8%, often much more. This test is now used worldwide in both research and clinical settings. If you live in Canada, TCR Sport Lab in Calgary offers it.

Reanalysis of PACE Data
In response to a request by patient advocates, a British court ordered the release of raw anonymized data from the PACE trial to an independent statistician. The reanalysis drew very different conclusions than the original published analyses. In the independent review, there was no significant difference between the CBT (7% recovered) and GET (4% recovered) groups and the control group (3% recovered) (Wilshire, 2016).

My Activity Recommendations for ME and Long COVID

• Pacing is the most effective way to lessen post-exertional malaise. Split activities into small chunks, switch activities before you tire, and rest as much as needed before and after activities to prevent a crash.
• Treat energy like money, and don’t spend more than you have. Learn to live within your daily budget.
• Consider using a wearable tracker. Let your body (heart rate and heart rate variability) teach you what your energy envelope is.

I share much more about the biology of fatigue and PEM and my top pacing tips in Chapter 5 of my eBook More Light. And in my DEEP Pacing webinar, I discuss how to overcome your inner objections to pacing—it is not something any of us want to do.

Myth 2: Dietary Fat (Especially Animal Fat) is Bad for You
I don’t know about you, but for me, growing up in the 60s and 70s, it was considered incontrovertible that dietary fat, especially from animal sources, was unhealthy. My mother did what most educated people did at the time. She substituted margarine for butter, bought 2% or skim milk, and served only “healthy” lean meats. When I moved out on my own, I continued her lead. I was so brainwashed that I found fatty foods repulsive and became vegetarian. I was vegetarian at the time I developed ME/CFS, so one might conclude that didn’t work out very well for me. I remember my roommate, during my residency training, cooking pork chops sizzling in fat, and it took all my nascent self-control not to tell her how wrong she was.

Is Dietary Fat Bad for You?
As I updated my knowledge by reading new, large research studies on the topic, I found out I was wrong, and she was right. Dietary fat (even animal fat) is good for us. Here is a brief summary of what one large study, the PURE study, suggests. 

• People who eat more fat have lower death rates than those who eat less fat. The authors recommend a fat intake of about 35% of total calories rather than the 15% suggested as “heart healthy” by mainstream organizations.
• Eating fat does not increase the risk of heart disease or stroke.
• The type of fat (animal or plant source) doesn’t matter nearly as much as we have been led to believe.

What about the health effects of carbohydrates and proteins?

• People who eat more carbohydrates (sugars and starches) have an increased risk of death. The authors recommend limiting carbohydrate intake to less than 60% of daily calories. Since there are only three food categories, at least 40% of calories must come from protein and fat. Note that the study did not distinguish between “healthy whole grains” and candy. Higher carbohydrate intake correlated with an increased risk of death.
• Higher protein intake was associated with lower death rates. The subjects got between 10–18% of their calories from protein. South Asians (especially from India, which is primarily vegetarian) eat the least protein, while South Americans and Southeast Asians eat the most protein.

Fast-forward 30 years, and I recently got together with my former roommate. We are both interested in health, and it didn’t take long for the topic of diet to come up. Coincidentally, we have flipped views. I now believe there are health benefits to eating more fat, and she (who has developed an autoimmune disease) had concluded she should cut back on fat.

My Recommendations for Dietary Fat Intake

• Follow the research and eat at least 35% of your calories as fat. What types? This remains hotly debated.
• I use a lot of olive oil on salads, cook with generous amounts of fats with high smoke points, like avocado oil, ghee and coconut oil, and eat generous amounts of meat and fish daily.
• My personal choice is to avoid seed oils like soy, corn, sunflower and safflower, canola, cottonseed, grapeseed and rice bran oils. They do not have the omega 6/omega 3 balance that is right for humans. Although there is a great deal of research suggesting they are beneficial, I cannot get my head around ingesting large amounts of novel, man-made substances.
  I touch on this in Chapter 6 of my eBook More Light.
  
  

Myth 3: Hormone Replacement Therapy Causes Breast Cancer
Why Hormone Replacement Therapy Got a Bad Reputation
I was early in my career when, in 2001, the Women’s Health Initiative (WHI) study results were released, telling us that estrogen and progesterone hormone replacement therapy for menopausal women caused breast cancer and heart disease. I was among the physicians who recommended discontinuing HRT for people already on it and not starting hormones for those who were considering it. 

I believed the sensational press releases and the continuing medical education, which quickly and consistently recommended against HRT.

Imagine my surprise earlier this year when I happened upon a podcast featuring Drs. Avram Bluming, MD, and Carol Tavris, PhD, authors of the book Oestrogen Matters. From this book and several recent articles on the same topic, I learned the following about HRT. Contrary to what I had believed, HRT in menopausal women

• extends lifespan by more than 3 years,
• decreases the risk of heart attack and stroke by 50%,
• decreases the risk of osteoporosis and bone fractures by 35 to 50%,
• decreases the risk of dementia by 35 percent, and
• does NOT increase the risk of breast cancer. In fact, of 45 studies published between 1975 and 2000, 82% found no increased risk of breast cancer in women using hormone replacement therapy.

I was left shaking my head. How can medicine get it so wrong and in a way that negatively impacts millions of women?

So, what is true about HRT?
HRT has two evidence-based uses:

1. It treats the symptoms associated with menopause (more on this below) and
2. It delays the onset of chronic health conditions in healthy postmenopausal women. This is called primary prevention.

My Recommendations on Hormone Replacement Therapy for Women

1. Women should be offered hormone replacement therapy for symptoms of perimenopause and menopause (things like hot flashes, brain fog, low libido and mood changes) if the symptoms impact their quality of life. Women who are at increased risk for the side effects of HRT, such as blood clots and stroke, should be much more cautious and consider other ways to treat menopausal symptoms.
2. HRT is safest and most effective when started during perimenopause or as soon after menopause as possible. Bone loss begins during this time and estrogen treatment prevents/delays this loss.
3. Bioidentical estrogen and progesterone may be safer than non-human molecules such as equine estrogen (Premarin®) or altered molecules such as medroxyprogesterone acetate (Provera®). This has yet to be proven in a large study.
4. To ensure quality and consistency, I recommend estradiol and progesterone produced by pharma companies rather than compounded creams.
5. The effective doses of hormones are very individual. Work with a knowledgeable healthcare professional to find the right dose for you.
   To learn more, read my blogpost on the benefits and risks of HRT.

 
Myth 4: Humans Don’t Need Sunlight to Be Healthy
Modern humans live in a very different light environment than our ancestors, even a few hundred years ago. The average North American adult spends as much as 96% of their life inside their home or car. Even if we are near windows, the glass blocks many of the wavelengths we need for good health.

It never occurred to me as I grew up spending much of my free time in skating arenas (no sunlight there) and in university lecture halls that I was putting myself at risk of health problems or that light was important at all. I never gave it a second thought. And yet, now that I have educated myself, I realize that all organisms evolved to use and depend on everything in their environment. We are, first and foremost, biological beings. We may be smarter than other species, but we still require air, earth, fire (sun) and water daily.

So, what does the sun do for us?

• Sunlight sets our body clocks each day so that all our organs, cells and genes work together.
• Ultraviolet B light converts cholesterol into vitamin D, steroid hormones like cortisol, and sex hormones like testosterone and estrogen.
• Ultraviolet A light activates hormone and neurotransmitter production. In response to UVA light, many critical molecules, such as melatonin, serotonin and dopamine, are produced in mitochondria in skin cells.
• Red and infrared light activate the mitochondria to produce more cellular energy.
• Near-infrared light creates melatonin in the skin cells. Melatonin is the body’s most plentiful antioxidant and is critical for protecting us from the damaging effects of ultraviolet light.
• Far infrared light is absorbed mostly as heat. E.g., fire, heaters and saunas give off a lot of infrared photons.

What Would Happen to Humans Without Sunlight?
What would happen is what is happening. The rates of chronic disease are skyrocketing. Of course, not all this ill health is due to our indoor lifestyle and lack of sun exposure. There are
many other problematic aspects of modern living, such as

• inactivity,
• inadequate sleep,
• not syncing our body clock to the sun,
• chronic stress, and
• highly processed foods in the diet.

From what I am learning, lack of sunlight is among the top causes of poor health and chronic disease. The good news is that sunlight is free and easy to access for most people most of the year.

My Recommendations for Sunlight

• Spend as much time outside (even in the shade) as possible.
• Go outside for 10 minutes at sunrise.
  ● Go outside for 10 minutes at sunset.
• Spend time outside at midday (you may have to work up to this if you are very sun-sensitive).
• If possible, keep a window open while inside to let the sun’s rays reach you. 

To learn more, check out my free video on hormesis and quantum biology https://www.eleanorsteinmd.ca/live (Tips for Healing with Hormesis and Quantum Biology.)

I hope you weren’t as adversely affected by these four health myths as I was. And if you believe them to some extent, please read the additional information I have linked to in this blogpost to see if it resonates with you or not. It has taken me years to shift my mindset and behavior. Awareness and information are the first steps.

If you want to stay on the cutting edge of emerging health science, join me in Live! with Dr. Stein, where we learn practical ways to live healthier and longer.