CFS / ME is characterized by persistent and profound fatigue, sleep disturbances, brain fog, dizziness, pain, gastrointestinal problems, and worsening symptoms after activity or exercise. Many people with this disease cannot get out of bed. Some use a wheelchair. Those with severe cases are tube fed in dark rooms.
The National Institutes of Health, or NIH, reports that only $ 15 million per year in federal funding is spent on CFS / ME research, even though up to 2.5 million Americans are diagnosed. However, this highly stigmatized disease is finally gaining attention due to the pandemic and similar symptoms that many people with COVID-19 suffer from who do not fully recover.
In 2020, the Centers for Disease Control and Prevention reported that one in five people with COVID continued to be ill six months after the initial diagnosis. People with long-standing COVID experience debilitating symptoms similar to CFS / ME, including fatigue, pain, headaches, and brain fog. Conservative US estimates point to 3.7 million long COVID cases. Many CFS / MEs are hoping that the recently allocated $ 1.15 billion NIH long-term COVID funding will also unveil new understandings and a cure for the disease.
What can we learn from CFS / ME to prevent COVID from becoming a long-term syndrome for some? First, like long-haul COVIDs, many people with CFS / ME link the onset of symptoms to a viral infection. Second, stress around the onset of an infection or during recovery can be important in determining whether a person is recovering. Finally, childhood trauma can initiate nervous system deregulation and, consequently, decrease in immunity later in life.
While our public health approach to COVID has focused on wearing masks and vaccines, research on CFS / ME indicates a different approach in the potential long-term prevention of COVID – the need to reduce stress, support lifelong mental health; and build teams of physicians and mental health practitioners who approach recovery holistically.
It is important to identify the sources of stress because they decrease immunity, thus increasing vulnerability to opportunistic viruses. For me, a not-so-perfect storm of childhood adverse events, homesickness, a romantic break-up, and efforts to pass a doctoral program led to an eight-year journey of recovery from CFS / ME.
My story reflects the #millions missing from public health conversations that have wisdom that could save lives in today’s pandemic world. For me, healing from CFS / ME has required a psycho-spiritual and psycho-spiritual approach to heal the underlying emotional trauma and to better understand the societal narratives praising self-transcendence and perfectionism that, like so many others. , I had embodied. Our bodies speak to us, first with whispers and then, when it doesn’t grab our attention, with symptoms.
There is hope for these conditions. We can learn to reprogram our nervous system and create cultures in which being “busy” is not glorified but “being” human is.
Could long haul CFS / ME and COVID have similar not-so-perfect storms? It can do no harm to strengthen our immune system while ensuring our sanity. While we’re at it, let’s put our shoes aside to honor those who can’t be on the streets and express the need for more funding to seek treatment for CFS / ME.