The more medical experts study disease, the more frequently inflammation seems to rear its problematic head.
Shedding more light on that subject and more for us is Dr. Christopher Snell, former chair of the Chronic Fatigue Syndrome Advisory Committee to the U.S. Secretary for Health. Snell is widely published and has lectured in the U.S. and abroad, including for the Food and Drug Administration and the National Institutes of Health.
With over 30 years of specialized experience, Snell said, “There are a lot of people that think a lot of illnesses are related to inflammation.”
Surprisingly, he mentioned cardiovascular disease. “It is increasingly being looked at as an inflammatory disease, with chronic immune activation as a significant contributor to the illness.”
ME/Chronic Fatigue Syndrome is becoming a clear-cut case. “It’s fairly obvious to many of us that ME/CFS is an inflammatory illness,” said Snell. The number of people this condition affects is significant. It is estimated there are between 836,000 and 2.5 million people afflicted with it in the U.S. alone.
Snell also said between 60 and 90 percent of ME/CFS patients have Fibromyalgia. Irritable bowel disease is a further frequent comorbidity. The telltale signs of ME/CFS are “profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort.”*
Sound like Fibromyalgia? “Very rarely do we see patients that have symptoms of ME/CFS that don’t have symptoms of fibromyalgia,” Snell confirmed. Since it’s rare for a doctor to see an ME/CFS patient at the inception of the illness, “An estimated 84 to 91 percent of people with ME/CFS have not yet been diagnosed, meaning the true prevalence of ME/CFS is unknown,” he added.
We are hearing more and more conversations about immune systems. With COVID-19, more and more people seem to be paying attention to building their immune systems in hopes of staying well. Many people who have had COVID-19 are experiencing long-term aftereffects, including significant, ongoing fatigue.
We are hearing people say, “My immune system is weak;” “I’m trying to build up my immune system,” and “It all comes down to immunity.”
Snell explained, “The immune system is incredibly complex.” But he did identify signs that are seen frequently in disease.
- “We have inflammation.”
- “We have an immune response and then all the consequences of that are associated with an extended immune reaction that can ultimately lead even to autoimmune illnesses as well.”
HIV is the “classic chronic immune activation illness,” Snell said, “There is a lot of inflammation in HIV.”
Reflecting back to other epidemics of the viral nature, Snell said, “If you survive[d] Ebola, there is a good chance you are coming down with a compromised immune system and symptoms that look very much like ME/CFS.” The same goes for the aftermath of SARS, as the data “shows people are still suffering symptoms years later that they can’t relate back directly to the illness itself.”
Snell places importance on truly evaluating symptoms rather than the “diagnosis.” As most of us know, symptoms can be explained to three different doctors and we may get three different diagnoses. For ME/CFS and Fibromyalgia, “very often we are looking at symptoms on the same spectrum.”
Symptoms that are most common with ME/CFS include tiredness, fatigue, pain, dizziness, “brain fog,” and sleep-related problems. Pain is a “predominant feature of Fibromyalgia,” Snell said.
“We [hear about] a lot of headaches and sometimes patients will describe it as a migraine; sometimes patients will describe it as a tension headache,” Snell explained. Occasionally Snell himself suffers from migraine. He too has learned to identify triggers, establish wellness practices, and has the added layer of compassion for being able to relate to those with migraine.
With brain fog, Snell said patients “can’t think, they can’t form sentences.” He said brain fog is being seen in a segment of COVID-19 patients.
It’s expected that the COVID-19 pandemic will allow for additional research of ME/CFS including “access to cadavers, which very rarely happens with ME/CFS and [the] ability to track people long-term,” he said. He also stated that there is a “strong probability that there will be [the first] animal model. Once you have an animal model it really speeds up the research process to identify aspects of the illness that are difficult to talk about, difficult to identify, and also to try out potential treatments.”
Since ME/CFS is rarely identified at onset, unfortunately a diagnosis of ME/CFS can take years to receive and even more time following for it be recognized by the medical community.
Given these factors, “research suggests its most common in people between 40 and 60 years of age,” although no age group is excluded Snell said. When a child is diagnosed with ME/CFS, they “tend to do better.” Although ME/CFS does not go away, it has been suggested that children learn to adapt and deal with the illness.
WorkWell Foundation offers the Cardiopulmonary Exercise Testing (CPET) to assist in measuring ME/CFS.
WorkWell’s test is performed on a bike with the test lasting from 8 to 12 minutes, with the patient “only at [their] peak for a minute or two of that time,” said Snell. The test is tried and true – a very well-established test.
The research and guidelines for interpreting results has all be done in the category of heart disease. When using the heart disease scale for ME/CFS and Fibromyalgia patients, Snell explains:
The CPET is looking at “the anaerobic threshold – the level above which you’re going into uncharted territory,” Snell explained. Once you’ve gone into uncharted territory – symptoms commonly appear.
Snell explained that many patients they see have chronotropic incompetence (in layman’s terms: a blunted heart rate). Chronotropic incompetence is “the inability of the heart to increase its rate commensurate with increased activity or demand [and] is common in patients with cardiovascular disease.”**
“Their heart rate is never going to go up to its predictive maximum,” said Snell. “So, if you keep trying, you could absolutely be at your limit but you’re still way below your target heart rate.” This too is common for Fibromyalgia patients. Snell said many migraine patients experience this as well.
“A lot of people with migraines are on beta blockers [which] do cap your peak heart rate,” he explained. “So normal recommendations for exercise don’t apply to anybody on beta blockers.”
With ME/CFS, Fibromyalgia, migraine, or any health condition you are living with, the importance of increasingly staying aware of your symptoms, voicing those to your doctor, sharing your peaks and troughs with family and friends, and being your own advocate can’t be stressed enough.
Snell emphasized the key necessity of staying aware of how you feel, “so keep track of what you were doing the day before you got PEM (post-exertion tiredness).” These would be denoted “triggers.”
These would be the “activities that take more than aerobic energy to perform, so you’re going into that anaerobic zone which occurs at much lower workloads in people with ME/CFS,” he said.
It’s believed that ME/CFS patients don’t use oxygen well, even though the oxygen is available. “We think it’s a metabolic illness,” said Snell. “They are not able to fully utilize the oxygen that’s available to them.”
When asked for his advice to the general public, Snell said he hopes ME/CFS is recognized as a real illness. “Please recognize it as a real illness. If somebody tells you [about experiencing these symptoms], they are sick. Other people have to recognize that you’re sick, and it’s going to bring about some limitations.”
Snell also underscored the importance of living a healthy lifestyle, “A healthy diet never did anyone any harm. We know that it’s beneficial for the immune system. So that’s a good thing to do.”
He has found that the people that “cope best with [ME/CFS] and bring some normalcy to their lives are people who recognize what brings on the symptoms, and they avoid PEM.” It requires a patient to be mindful of the activities they are performing each day (no matter how big or small), acknowledge how they are feeling later that day and the days that follow, and adjust accordingly.
“If you don’t trigger that inflammatory response and that immune response you’ll function at a much higher level and you’ll avoid a lot of the [negative] symptoms,” Snell said. He does understand that modifying your life this way poses restrictions and doesn’t allow a person to do the things they may want to do.
Snell had a good analogy. “You’re going to have to pay back essentially the loan. You’ve borrowed against future energy consumption and you’re going to need to pay that back.”
“Having sympathy for yourself as well,” is crucial, Snell said. “You have to recognize that [you’re] sick and it’s not [your] fault.”
It’s important to note that ME/CFS and Fibromyalgia are not psychological disorders. Many individuals with chronic illness have experienced disease-related depression symptoms – which is very tough on the immune system.
*Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Redefining an Illness, Report Guide for Clinicians, Institute of Medicine.
**Brubaker, P. H., & Kitzman, D. W. (2011). Chronotropic incompetence: causes, consequences, and management.
Coming next: “Pain: The #1 reason people seek medical help”