We recently came across an article in TIME Magazine entitled “Why So Many long-COVID Patients Are Reporting Suicidal Thoughts”. Overall, we felt like the article made some good points. But we felt like the author of the article, Jaime Ducharme, missed the mark a few times when discussing how the medical establishment fails patients.
What is Long COVID?
Long-COVID, aka post-COVID syndrome, post-acute sequelae of SARS-CoV-2 infection (PASC), post-acute COVID-19, and chronic COVID-19 all refer to persistent symptoms following an initial infection with the coronavirus that causes COVID-19. Some of these patients refer to themselves as “Long-haulers”.
Long-COVID is defined as symptoms lasting longer than a month or 3 months since contracting COVID-19. Fatigue and shortness of breath are the most commonly noted symptoms but others also experience chest pain and cough. Then there are the unusual complaints like hair loss, brain fog, and sweating. But long-COVID shouldn’t be confused with the acute COVID symptoms that simply take time to resolve.
The CDC estimates that about 13% of people infected with SARS-CoV-2 will remain symptomatic for one month while 2.5% will still experience symptoms after three months or longer. 30% of those hospitalized for COVID-19 will suffer some form of long-COVID for up to 6 months.
The Devastating Effects of Long COVID
So even though relatively few continue to battle with the fallout of SARS-CoV-2 infection, the disruption to their lives can be quite severe. According to Ducharme’s article, 45% of long-haulers responding to a survey admitted to suicidal thoughts. It’s should be noted that all of the respondents belonged to a support group for long-COVID patients.
Ducharme goes on to talk about the brain-body connection. We completely agree with her when she reports that while some people develop a classic primary psychiatric condition like depression, others develop depression or anxiety as a result of suffering physical symptoms and the limitations they impose.
We also wholeheartedly agree with Ducharme when she says that chronic physical pain is a risk factor for suicide. Physician Associates are no strangers to chronic pain, especially those in primary care fields.
Long COVID, Chronic Pain, and Other Medical Mysteries
Battling chronic pain can be exhausting. It often feels like there’s no escape. Sometimes sleep even fails to provide relief from the unrelenting pain only to become a new source of suffering. When you live with chronic pain (or any disease, really), you start to pull away from everyday activities and responsibilities. You start to feel like a burden to those around you.
The situation is often compounded when there’s no obvious or external source of the pain. Everyone understands back pain, for example, but not everyone understands what it’s like to have pain, tremors, and vibrating sensations in their chest keeping them awake at night like Heidi Ferre who took her life in 2021 as a result of long-COVID.
Where TIME Magazine Got it Wrong
But here’s where we start to part with Ducharme and her piece published on June 13, 2022.
First, she claims that the medical system often fails to accommodate the complexity of chronic conditions, suggesting that healthcare providers don’t understand that human disease is not simply all “physical” or all “mental”.
She claims that “many chronic-disease patients are misdiagnosed or assigned labels that don’t capture the full reality of their conditions”, but she fails to provide any evidence of this.
She tries to use Chronic Fatigue Syndrome, also known as myalgic encephalomyelitis, as an example of doctors accusing patients of imagining their symptoms. In reality, most doctors know that there are several theories regarding the pathophysiology of myalgic encephalomyelitis/Chronic Fatigue Syndrome.
Acute Infection May Trigger Chronic Symptoms
Viral infection, for example, is one leading theory. This includes Epstein-Barr (the virus causing mononucleosis) and, yes, SARS-CoV-2. Some experts believe that the immune system is at fault, reporting sluggish natural killer cells, autoantibodies, and increased levels of cytokines that seem to predict symptom severity.
We also take issue with her mention of “Chronic Lyme Disease”, a condition that is not generally accepted as a well-defined and distinct entity from either myalgic encephalomyelitis/Chronic Fatigue Syndrome or fibromyalgia (Chronic Lyme Disease should be not confused with post-treatment Lyme Disease). Ducharme follows with an accusation that mental health conditions are often incorrectly diagnosed in their place.
The Mind-Body Connection
The truth is that most patients are more complex than the TIME article suggests. Comorbidities are the rule, rather than the exception. Suggesting otherwise betrays the brain-body connection, also known as the mind-body connection. Pure somatoform disorders do exist, but they’re much less common than everyday disorders and their effect on the mind.
The notion that fibromyalgia, for instance, is still somehow perceived in the medical community as “psychosomatic” is false. The last time a major academic paper questioned the existence of fibromyalgia was in 1987. On the contrary, fibromyalgia is now believed to be a pain processing disorder–a condition of central sensitization.
The Pleiotropic Effects of Antidepressants
To illustrate her point about clinicians not comprehending the “full reality” of their patient’s conditions, Ducharme shares the story of Adriane Tillman, who now works with the advocacy group #MEAction.
Tillman alleges that her debilitating condition was reduced to depression and that no matter her attempts to get the doctors to see things her way, (which included a PowerPoint presentation, apparently), she was only prescribed “increasing doses of antidepressants”. This seems an attempt to deride the complex role of those medications termed “antidepressants”.
Perhaps the patient was prescribed duloxetine which is FDA-approved for chronic musculoskeletal pain, diabetic peripheral neuropathy, and fibromyalgia as well as depression?
Or maybe it was a tricyclic antidepressant like amitriptyline? Perhaps both Tillman and Ducharme were unaware that tricyclics have been used in chronic pain states for over 30 years.
Pseudoscience Slows Progress and Hurts Patients
We feel for Adriane, however. We all have patients like her. Some of us have been her. It’s true that some doctors don’t listen or don’t know any better. It’s true that the volume-driven system we work in disincentivizes spending time with patients. It’s also true that there is in-fighting that makes our healthcare system more dysfunctional than it ought to be.
But it seems that the author herself is guilty of neglecting the brain-body connection. While we lack uniformly successful treatments for all types of chronic pain, we have plenty of ways to treat depression. And as previously stated, the two go hand-in-hand and often become inseparable.
Both fibromyalgia and myalgic encephalomyelitis/Chronic Fatigue Syndrome are bonafide diagnoses, and terrible maladies to bear. Both have significant physical and psychological components. But pseudoscientific diagnoses like Chronic Lyme Disease and systemic candida, for example, don’t get us any closer to a real solution, despite how much these patients suffer.
Primary Care Comes Before Secondary, Specialty Care
We agree with Jaime Seltzer, director of scientific and medical outreach at #MEAction, when she says that research on mental health needs to better account for the realities of chronic illness.
Standard screening questionnaires, like the PHQ-9, can certainly capture the psychological aspects of chronic physical illness and make them appear to be symptoms of depression. Still, a discriminating PA who takes the time to listen won’t be easily fooled.
Ducharme next shares the story of Marissa Wardach, whose ex-husband John died by suicide due to developing long-COVID. She quotes Wardach as lamenting the lack of long-COVID-19 specialty clinics as if there were some furtive, unpublished treatment available only to a select few.
The truth is that there isn’t a cure for long-COVID and similar conditions. And there’s simply not enough good evidence to encourage widespread treatment. When we don’t wait for good evidence, we end up with half-baked quick fixes that ultimately disappoint as in the case of hydroxychloroquine and ivermectin.
How Can We Treat Long COVID and Other, Similar Maladies?
But none of this suggests that there’s no hope for patients struggling with chronic symptoms, regardless of whether or not they can be neatly categorized into one or more diagnoses.
Ducharme’s TIME article suggests that if only Wardach’s husband could have seen a specialty COVID clinic, he might have been prescribed trazodone which “may have helped her sleep despite her chest vibrations”.
Trazodone is not an unknown treatment for those struggling with sleep issues. In fact, it’s probably one of the most common sleep aids prescribed in the United States. It’s also an antidepressant.
Trazodone, like duloxetine and many other drugs, is frequently used off-label. Using a medication off-label means that it is being prescribed for something other than its official FDA-approved use. Interestingly enough, trazodone, which functions as both a serotonergic receptor antagonist and serotonin reuptake inhibitor, is also used off-label in the treatment of fibromyalgia.
Mind-Body Medicine for the Brain-Body Connection
Abigail Hardin is an assistant professor of psychiatry and behavioral sciences at Rush University and she believes many illnesses are “bidirectional”, meaning that the body and mind are interconnected. But Selztler, who works with #MEAction, says that doctors should not try to attribute a patient’s symptoms to mental states such as stress, “and therefore place the responsibility on the patient to calm themselves down…” No disease, she insinuates, should be attributed to an incorrect manner of thinking. We believe she’s mistaken.
Approaches like cognitive behavioral therapy, “often aren’t helpful for patients with very real physical symptoms”, says Selztler. Does she not believe in the bidirectionality of chronic disease?
Why not employ every method possible to help a patient deal with chronic illness? We’ve already established that the body and mind are not affected in isolation. Chronic illness often leads to maladaptive behaviors such as catastrophizing.
Both cognitive behavioral therapy and mindfulness are core treatments in fibromyalgia, for example. Cognitive behavior therapy and the self-management techniques patients learn through it have been shown to improve physical function and reduce pain in fibromyalgia.
Following the Evidence in Long COVID Treatment
So what can be done for long-COVID patients (especially those whose symptoms overlap with ME/CFS and fibromyalgia)?
- Document symptoms accurately. Give the patient time to share their story. Show them empathy.
- Develop a common-sense workup for reported symptoms. Pulmonary function tests and electrocardiograms for those complaining of cardiorespiratory symptoms, for example.
- Identify target symptoms instead of wholly focusing on diagnostic labels.
- Stay up-to-date with the long-COVID literature.
- Symptom-directed therapy:
- Fatigue – modafinil, methylphenidate
- Insomnia – Trazodone, doxepin
- Optimize things the patient can control: nutrition, exercise/activity, and sleep.
- Vaccinate–COVID-19 vaccines can reduce the risk of COVID recurrence, and for a large number of people, actually reduce symptoms of long-COVID.
- Borrow treatment plans from myalgic encephalomyelitis/Chronic Fatigue Syndrome and fibromyalgia
- Myalgic encephalomyelitis/Chronic Fatigue Syndrome
- Cognitive-behavioral therapy to improve coping strategies and assist in rehabilitation
- Graded exercise therapy–Though controversial, fear of movement only further reduces capacity. Pacing and energy conservation are other strategies.
- Cognitive-behavioral therapy improves function, mood, energy, and pain
- Exercise, specifically Tai chi
- FDA-approved medications: duloxetine, milnacipran, and pregabalin
- Second-line medications: cyclobenzaprine, amitriptyline, LDN, gabapentin, THC/CBD
- Avoid NSAIDs/opiates unless for a separate, appropriate indication.
- Myalgic encephalomyelitis/Chronic Fatigue Syndrome
There is no cure for long-COVID at this moment but doctors, PAs, and patients are not without options. We all need to remember how any sickness affects both the mind and the body. Don’t mistake your doctor disagreeing with you for not listening to you. Trust that if they recommend an antidepressant, for example, there might be a good reason for it. Be your own advocate but give them the benefit of the doubt.
This article was written by PA Doctor staff and medically reviewed by Wes Johnson, DHSc, PA-C.