A new clinical challenge: supporting patients coping with the long-term effects of COVID-19

ABSTRACT

Mental Health Practitioners (MHPs) have a unique opportunity to provide resources and support to those suffering from Long COVID (LC), the post infectious illness that often follows an acute SARS-CoV-2 infection. In working with these individuals, MHPs can learn from the experiences of patients with another post-infectious disease known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS was once thought to be a psychologically mediated disorder caused by deconditioning and the fear of exertion following a precipitating event such as a viral infection. Research now shows that LC and ME/CFS are biomedical, multisystem, complex physiologic diseases. This article provides a framework to MHPs for the treatment of LC patients using knowledge derived from three decades of research on ME/CFS.

KEYWORDS:

• Long COVID
• ME/CFS
• myalgic encephalomyelitis/chronic fatigue syndrome
• chronic fatigue syndrome

Overview

Mental Health Practitioners (MHPs) are in a position to provide helpful and valuable resources for those who have not recovered from SARS CoV-2 infection. These individuals have been referred to using many names including, people with Long COVID (LC), long-haul COVID, post-acute COVID-19, post-acute sequelae of SARS CoV-2 infection (PASC), long-term effects of COVID, and chronic COVID. Initially, COVID-19 was thought to have one of two outcomes: full recovery or death. However, researchers estimate that from 10 to 39 percent of people who were infected with COVID-19 may go on to develop LC [1–6]. Some people who were infected experience multiorgan effects that can involve the heart, lung, kidney, skin, and brain. Those with SARS CoV-2 infection are also more likely to develop new health conditions such as diabetes, heart conditions, or neurological conditions compared with people who have not had COVID-19 [7]. In this article, we use the term LC to refer to individuals with persisting symptoms after SARS CoV-2 infection, some with medical conditions due to the infection (e.g. vascular damage and fibrosis in the lung that occur during acute respiratory infection) and some without these medical problems but who have lingering and unexplained symptoms in multiple areas.

While researchers are seeking to understand the physiological impact of COVID-19 and its long-term consequences, people experiencing LC are coping with an uncertain prognosis and varying levels of ill health/disability. Many with LC will seek or be referred to a variety of healthcare professionals including MHPs. This article highlights some of the clinical challenges that MHPs will have as they support people with Long COVID cope with this illness.

In preparing to work with individuals living with LC, there are informative lessons to be learned from over 30 years of research and clinical work with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Diagnostically, ME/CFS was first depicted as having been caused by psychogenic factors subsequent to an infectious illness, where patients were viewed as becoming deconditioned and fearful about their activity levels [8]. Over time, a significant paradigm shift did occur, which involved conceptualizing ME/CFS as a biomedical, multisystem, complex disease [9–11]. This article helps provide MHPs information about another post-infectious illness, LC, which we hope will provide people with LC integrative MHP guidance for treatment using knowledge from what occurred with ME/CFS.

Post-infectious illnesses like ME/CFS have been misunderstood by both medical and mental health professionals, particularly when there are no confirming laboratory tests to identify the underlying disease process. These patients have often been told they have normal medical tests, advised that anxiety or depression is what is causing their symptoms, and then referred for mental health therapy [12,13]. For decades, this paradigm of practice resulted in stigma, as well as financial, physical, and emotional suffering to those with this illness and their families [12–14].

Unfortunately, LC has elicited the same skeptical reaction as what initially occurred with other post-infectious illnesses [15,16], with many patients being told they are experiencing pandemic-derived post-traumatic stress disorder (PTSD). Some providers assume that LC is a psychologically-mediated condition [12,18] akin to what occurred earlier with ME/CFS. We argue in our article that the evidence does not support this clinically inaccurate approach for the care of people with LC.

Health care practice needs to offer an integrated and compassionate approach for those who need medical and mental health treatment [14]. An accurate mental health model of chronic illness treatment acknowledges that chronic illnesses have a significant impact on mental health [19]. For example, there is agreement among healthcare professionals that a person with cancer has a defined illness that impacts their emotional well-being. It should be no different with LC. In fact, MHPs have the unique opportunity to provide healthcare in collaboration with medical service providers and potentially lead to best practices for clinical outcomes [20].

Lessons learned from ME/CFS

Dr. Anthony Fauci, the Director of the National Institute for Allergy and Infectious Diseases, has stated that people with LC can develop ‘a post-viral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome’ [21]. Indeed, recently published research indicates that the most frequent symptoms in people with LC overlap with ME/CFS symptoms of severe fatigue, muscle and joint pain, cognitive dysfunction (colloquially referred to as ‘brain fog’), and post-exertional malaise (PEM) [9,11,22–25]. Additionally, it has been suggested that up to 45% of those with LC meet the diagnostic criteria for ME/CFS [2–6]. PEM refers to an exacerbation of symptoms or the appearance of new symptoms after a triggering event (https://www.meaction.net/resource/pacing-and-management-guide/) and reduction in functioning after either physical or cognitive activity and is a cardinal symptom of ME/CFS. Physical, cognitive or sensory overload can precipitate PEM. Of the many symptoms that both conditions share, two are often highlighted, PEM and cognitive dysfunction [23].

Post–COVID-19 syndrome is similar to post-infectious fatigue syndromes triggered by other infectious agents and to ME/CFS, a condition that patients often report is preceded by an infectious-like illness [22]. Both illnesses affect all races, ethnic groups, socioeconomic groups and ages [26] and show multisystem dysfunction (e.g. neurologic, immunologic, metabolic, autonomic, gastroenterologic, cardiac), and impairments related to PEM [25].

Managing PEM is a central challenge for people with LC and people with ME/CFS. Medical professionals unfamiliar with PEM, often miss this essential symptom due to its delayed onset and symptom volatility, leading to a misdiagnosis of a mental health disorder (anxiety, depression, etc.).

As referred to above, there has been a paradigm shift now conceptualizing ME/CFS as a biomedical, multisystem, complex disease [9–11]. However, some prominent long-term supporters of a psychiatric model have been reluctant to embrace this shift, despite the growing body of compelling scientific evidence [27]. As we document below, this could continue to cause stigma for people with ME/CFS and LC who are dealing with a significant traumatizing illness as well as often stigmatizing reactions of healthcare workers to their persistent symptoms.

At its core, the psychogenic model implies that a medical illness is a biopsychosocial condition [28]. For example, early on, ME/CFS was dismissively characterized as yuppie flu. In 1988, the CDC renamed the disease ‘Chronic Fatigue Syndrome.’ Meanwhile a group of psychiatrists established a biopsychosocial model of ME/CFS in which the condition was postulated to be the result of false cognitions including a fear of activity, maladaptive coping styles, and/or deconditioning, and that this could be successfully treated with Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) [29]. For instance, GET was framed as a curative intervention in which patients with ME/CFS were to be instructed to incrementally exercise regardless of increasing symptoms [30]. Adding to these problems, medical school training was minimal, so physicians were not prepared to help in any treatment plans for these patients [31].

The ‘Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation’ (PACE) trial promoted this combined CBT and GET approach as a viable treatment approach for recovery in ME/CFS patients. However, several reanalysis papers published over the past few years have shown that recovery level outcomes did not occur for the vast majority of participants in the PACE trial, (e.g. [32]). Perhaps one of the most damaging effects of the CBT model on patient care is the assumption that false patient illness beliefs exist, and that a biologic condition does not underlie this condition [30]. This does not align with the scientific evidence on this illness and as Scott et al. [33] notes, the credibility of the cognitive–behavioral treatment model has been removed as a recommended treatment for ME/CFS [13,14,34,35]. Notably, these types of cognitive behavioral interventions that promote higher levels of activity in spite of symptoms, have proven to exacerbate symptoms and severity in many cases [8,10,34].

A useful alternative to the CBT model is Jason et al.’s [36] envelope approach to intervention, which began to be developed in 1993, and which postulates that people who maintain their expended energy at a level consistent with their available energy will have better health outcomes and quality of life compared to those who over-expend their energy levels. Staying within one’s energy envelope is central, which is in contrast to the CBT approach. There is evidence that those who can stay within this energy envelope report increased stability in their physical functioning and decreased fatigue severity [37]. Other supportive evidence is that energy production is impaired as evidenced by oxidative stress hypothesized to be caused by persistent redox imbalance in both LC and ME/CFS [38].

As people with LC experience similar skepticism about the cause of their illness similar to those with ME/CFS, MHPs are uniquely positioned to support people navigating the uncertain waters of LC or ME/CFS. An integrated approach by medical and mental health providers will provide better care, if implemented correctly.

Long COVID case studies

As will be shown by the following three case studies, those with post-infectious illnesses have prolonged medical challenges requiring adaptations and supports to address their ‘new normal.’ Let’s look at three people with LC who either awoke to this new normal, or had one gradually unfold.

Marc is a 27-year old physician who, pre-COVID, was balancing medical school, residency, marriage, and fatherhood. His first year working in a hospital began shortly after ‘recovering’ from COVID. The new symptoms became evident within three weeks of his ‘recovery’ from COVID. He became increasingly exhausted carrying out his routine which required fewer hours than his medical training and much less physical, mental, and emotional strain. Marc became concerned about his failing health, aware that he was experiencing exhaustion from completing tasks such as walking to his car and office, or conducting routine morning rounds. Cognitive difficulties made concentrating and performing cognitive tasks increasingly more challenging. He consulted dozens of physicians and underwent countless medical tests, which were unrevealing. Ultimately his doctor suggested his illness was psychological in nature, and that perhaps his chosen career of medicine was too stressful for him. His doctor described him as ‘lazy,’ ‘burned out from medicine,’ and suggested that he should be evaluated for a conversion disorder or post traumatic illness Not Otherwise Specified (NOS) after having COVID.

Daniel, a 27 year-old entrepreneur, launched his first health care company six years ago and has grown the company with hundreds of employees, and multiple facilities throughout the country. Full of energy, creativity, and a contagious love for life, he worked countless hours and traveled to multiple states each week to oversee projects. Like many of his friends and staff, Daniel contracted a mild case of COVID over sixteen months ago and resumed work after the specified quarantine time. Within a couple of weeks, it became apparent that Daniel’s energy and concentration had significantly declined. Often tired, he had brain fog, experienced dysregulated body temperature, anxiety, irritability, and a short-fuse that were totally foreign to him. These symptoms waxed and waned, and exacerbated whenever he attempted to resume his pre-illness schedule. His wife became increasingly concerned about his vacillating functioning and reached out to a number of primary care doctors, as well as specialists seeking a diagnosis and treatment for his symptoms. Neither of them, nor the doctors with whom they consulted, recognized the link between his mild COVID case and his decline in his overall health.

After numerous appointments with physicians, even those from his own health care facilities, none of the doctors were able to provide any recommendations as his exam and lab results came back normal. Frustrated by his diminished capacities and the lack of interventions, coupled with the urging of each of his doctors, Daniel finally saw a local psychiatrist who diagnosed him with depression and conversion disorder. The psychiatrist felt that he had ‘burned out’ from over-extending himself, and over-achieving for so much of his life. He was prescribed antidepressants and stimulants to improve his functioning. Regrettably, the psychopharmacological interventions were not effective. Like Marc, Daniel began experiencing symptoms weeks after he was considered to be ‘recovered’ from COVID.

Lauren, a 27-year-old actress, model, and dancer, began observing changes in her cognitive functioning three weeks after resuming work, following acute COVID. She experienced forgetfulness and challenges recalling names and words. Her energy level also markedly decreased in the weeks following returning to work. She started to tire easily and found herself unable to maintain a half schedule. She forgot her scripts, her dancing was awkwardly sluggish, and she lagged behind during rehearsals. One of her supervisors suspected she was using drugs and required a drug clearance before allowing her into the dance studio. She was referred to a psychologist for both substance abuse and Munchausen Syndrome.

Marc, Daniel, and Lauren, three young adults, had been leading robust and active lives. They presented with residual symptoms of COVID weeks after being advised they had fully recovered. None of them received corroborating medical findings and each was suspected of feigning symptoms. They were ultimately referred to one of the authors for medication and therapy. However, in speaking with them during individual sessions, it became evident that none of them had a history of mental or physical health issues before contracting COVID that contributed to their developing LC. Further, a pre-existing condition would not disqualify a person from a LC diagnosis.

The common denominators of these young adults, like those living with ME/CFS, are that they: (a) woke up one day and everything had changed – their lives were shattered; (b) presented as healthy and did not ‘appear’ sick; (c) their basic lab work did not corroborate any known illnesses; and (d) their primary care physicians did not know how to diagnosis or treat LC. As is common, their doctors assumed a psychiatric diagnosis and made mental health referrals. It should be noted that in these case studies, the young adults did not have a pre-existing condition. However, many people with pre-existing conditions are suffering with LC along with their medical conditions.

In a recent article in The Atlantic, Yong [39] shares the experiences of physicians and medical professionals who after being on the front-line during the COVID epidemic now find themselves with LC. They describe not being believed by their medical colleagues when presenting as suffering with serious symptoms such as cognitive dysfunction, confusion, and extreme fatigue following COVID. They were referred for counseling by their medical colleagues in both the United States and Great Britain. Interviewees that had been taken more seriously presented with more obvious symptoms such as slurred speech. It is unfortunate that so many individuals with similar post-infectious symptoms are not receiving the appropriate medical recommendations that are recommended for those with ME/CFS and LC [40], as will be explained below.

Medical journey

These young adults have had to navigate many complexities on their medical journeys with COVID. Daniel and Lauren, most impacted by the cognitive dysfunction and extreme fatigue, initiated their medical treatment with visits to endocrinologists and neurologists. Marc started with his internist and an infectious disease doctor. Collectively, they saw doctors from primary care, endocrinology, neurology, infectious disease, sleep disorders, functional medicine and cardiology. They also attempted reflexology, acupuncture and yoga. For each encounter, they brought a folder full of lab results, doctors’ notes, and their own personal notes. Tests revealed nothing significant. People with LC were often left with little direction or guidance that might generate hope for improvement or recovery.

Unable to find explanations for their progressive decline in health, their physicians believed the symptoms were a psychological response to severe trauma and, thus, referred them to psychologists or psychiatrists. To quote one doctor: ‘This clearly isn’t medical, it must all be in your head.’

Psychological journey

These well-intentioned physicians diagnosed each of them with a multitude of diagnoses from the Diagnostic and Statistical Manual of Mental Disorders, adding Not Otherwise Specified (NOS), to explain why the diagnostic criteria were not strictly met. They were given diagnoses of conversion disorder (NOS), depression (NOS), ADHD, inattentive type NOS, and/or attachment disorder (NOS), PTSD (NOS). Two were informed (incorrectly) that they struggled with repressed sexual abuse and were classified as feigning illness in the service of an avoidant personality disorder. In our case studies, for each diagnosis, a different class of psychiatric medication was recommended and then within each class, higher dosages, and then drug combinations ultimately leading to significant side effects. However, it is important to note that some people with LC do experience clinical depression as a comorbid condition and do be benefit from antidepressants; albeit typically in lower doses than the recommended dosing.

Two of the physicians and one of the treating psychiatrists were superficially familiar with GET, yet unaware that it was no longer considered an appropriate therapy for ME/CFS. They, thus encouraged their clients to do more to ‘exert themselves.’ One was told to ‘stop being resistant if you want to get better.’ Lauren’s psychiatrist, convinced that GET was essential to her ‘recovery,’ and criticized her for being resistant to going on a daily one mile walk. ‘Be a good patient and try it for a week; maybe even two weeks. It gets easier,’ her doctor reassured her. Similarly, Marc was told to push his body beyond its limits to overcome his ‘laziness and resistance to his medical practice.’ The first psychologist Daniel saw recommended CBT in the belief he was ‘burned out from years of hard work’ which ultimately contributed to his depression and loss of interest in working harder. Daniel followed his CBT action plan despite his increasing cognitive dysfunction and exhaustion. He found himself in bed for days at a time, unable to shop, prepare food, or manage his responsibilities at the level he was accustomed. Each therapy session tweaked his action plan and addressed his negative self-talk, while down-playing his symptomatology and ignoring the warning signs that his body was providing. For these examples, it is clear that for any behavioral management plan to work in medical illness, the patient’s symptoms and limitations must be taken into account and addressed respectfully, rather than minimized or ignored [41].

Other MHPs added more interventions informed by the various schools of psychology. A psychodynamic practitioner suggested early childhood trauma and attachment issues. The psychoanalytic therapist diagnosed conversion disorder and recommended three sessions a week. Two of these young adults were treated as being in a dysregulated emotional state and had Dialectical Behavior Therapy (DBT) included in their treatment.

The therapists, frustrated with the lack of progress (often characterized as working with difficult or treatment-resistant patients), soon introduced medication. Medication cocktails of selective serotonin reuptake inhibitors (SSRIs), monoamine oxidase inhibitors (MAOIs), benzodiazepines, stimulants and sleep remedies were prescribed. Escalating doses to treat a ‘depression’ that’s not there is incredibly harmful. Ultimately, these medication trials resulted in side effects on the patients’ already compromised functioning. For example, side effects from these medication trials exacerbated their suffering by creating additional issues such as an inability to sleep or stay awake, focus or hyperfocus, heart racing or lowered heart rate, poor balance and gait, irritability, anxiety, depression, and/or an overall sense of unwellness. These young adults were seeking to improve their functioning and their spirits, but sadly, these interventions were both dangerous and damaging. When psychiatric medications are indicated and prescribed appropriately, with attention to LC and its symptoms, the patient may benefit.

Lessons learned: how therapists can more effectively support people with LC

This section examines how efforts to help those impacted by LC can be informed by the experiences and challenges of those living with ME/CFS and other post-infectious illnesses. There is no question that the COVID pandemic has had a profound impact on a significant percentage of those infected [42]. The case examples above capture the regression experienced in daily functioning in the aftermath of having had COVID.

In the absence of restorative treatments, MHPs can play an integral role in helping patients adapt to and manage post-COVID sequelae that may include limiting symptom exacerbations, adapting their home and life to their new reality and addressing persistent stigma and disbelief from health professionals and family members. An important role of the MHP is to validate the patient’s experiences of these difficulties and challenges in the context of an uncertain prognosis and the absence of curative intervention. Additionally, the MHP can facilitate an integrative approach to bridging medical management with support of the people with LC’s mental health needs.

Role of mental health therapists

1. Understanding the illness. Psychological interventions that push people to increase activity regardless of the symptoms experienced, such as CBT, DBT are not recommended as treatments for ME/CFS and LC. As noted earlier, the cognitive–behavioral model erroneously reframes patients’ experiences as a psychological condition. However, ME/CFS and LC are serious and complex medical conditions, with biomedical root causes [9]. Just as these psychological interventions would be ineffective in curing diabetes or cancer, they will not cure LC or ME/CFS [40].

Best practice for MHPs working with ME/CFS and LC involve validating the diagnosis and/or symptoms, facilitating an individual’s coping with grief, loss and adaptation, while also addressing any pre-existing or secondary mental health issues [43]. A key feature is helping patients recognize their physical and cognitive limitations. Therapists can validate the individual’s symptoms and work with them to get a LC and/or ME/CFS diagnosis by coordinating care with the primary care physician. Therapists can suggest an organic etiology and identify any secondary mental health comorbidities that can be addressed with therapy and medication as indicated.

In addition to validating the person’s experience(s), it can be helpful to educate and provide material about ME/CFS if the person meets criteria. Given what we know, it may be helpful to caution against exerting themselves unnecessarily (which many people do, even if not prescribed by a physician because it's what our society values). A therapist can then explore the meaning of the transition from being a person who always pushed themselves through adversity, to no longer being able to use this method of ‘pushing through’ to overcome the challenge.

An individual with a post-infectious syndrome may appear to have a primary mental health disorder, when in fact, there is a physiologic driver contributing to the symptom presentation witnessed by the MHP. For example, the person may present with symptoms indicative of an anxiety disorder: racing heart, dilated pupils, tremors, sweating, dizziness, chest tightness, shortness of breath, etc; when in fact, these may be a physiologic consequence from being in an upright position, developed post-virally due to dysautonomia or orthostatic intolerance. By coordinating care with the primary care physician, therapists can validate the individual’s symptoms and work with them to get a LC and/or ME/CFS diagnosis. Therapists can suggest an organic etiology and identify any secondary mental health comorbidities to be addressed with therapy and medication as indicated. The following section offers a series of questions that may aid in an accurate diagnosis.

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Proper interviewing when considering biomedical and/or psychological diagnosis. Our understanding of LC is in its infancy. Therapists with an interest in this type of complex illness will need to become familiar with the emerging LC research. During initial intake assessments, therapists should be mindful of asking specific questions about the presentation and onset of symptomatology post-COVID, triggers of symptoms (e.g. week before menstruation, exertion, etc.) as well as mental health issues that pre-dated having COVID-19 (e.g. depression, anxiety, mood disorders). One of the authors, Dr. Nina Muirhead, a physician living with ME/CFS and actively involved in LC research and advocacy, suggests the MHPs ask specific questions to guide in the diagnosis (Table 1).

Table 1. Eliciting COVID-19 history and symptomatology.

Did you have COVID-19 (or do you think you may have had COVID-19)? Did your exhaustion, brain fog, fatigue, sleep disturbance, anxiety/depression exist before your COVID-19 infection or afterwards? What fraction of your pre-illness capacity are you functioning at? What happens when you engage in normal (previously tolerated) physical or mental exertion? How much activity does it take to make you feel ill or to trigger illness worsening? How long does it take to recover from this physical or mental effort? Do you avoid or change certain activities because of what happens after you do them?

Source: Muirhead, N. Personal communication, 2021 Sep 15. For further discussion with elaboration of PEM view [44].

MHPs can focus on more fully understanding the experiences from a patient’s perspective as they spend more time with them than most medical professionals. LC is not a solitary condition. Each person may have a unique constellation of symptoms ranging from fatigue, cognitive dysfunction, etc. with or without organ damage that guides assessment and intervention. While the presentation of depression and LC is similar, interventions vary with exercise helping with depression and hurting in LC where PEM may be induced.

The MHP’s ability to be empathically attentive to the patient is important in lessening the emotional impacts of being ‘marginalized, and shunned’ by medical doctors. This type of understanding can enable the MHPs to build a strong relationship with the patient and generate opportunities for constructive guidance [11,45]. Moreover, therapists can provide the patient with support and skills to manage their illnesses, while simultaneously helping them navigate medical treatment, relationships with doctors, and possibly educational, home-based or workplace accommodations [12]. The input of MHPs familiar with chronic illnesses and aware of LC and/or ME/CFS experiences might enhance clinical outcomes. Moreover, knowledgeable MHPs can communicate directly with a person’s medical providers to educate them and provide resources, as well.

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Suicide assessment. Having a complex chronic illness, especially one without a treatment or cure, is very difficult and often traumatic. Ongoing suicidal assessment is important. While a skillful psychological stance won’t cure these diseases, it certainly can support those struggling. Grief and loss are understandably common feelings among those suffering from post-infectious illnesses, given how their lives have been dramatically altered. It is important that MHPs allow patients to process these powerful emotions and reassure them that emotional expression itself is purposeful and should be considered as a measure of success. Individuals with such illnesses often struggle with intense grief as they adapt to the loss of their previous identity, the changes in their relationships, the loss of their careers, finances, financial stability and more, all in the context of an ableist society. It is important for MHPs to be mindful that those with LC may, like those with ME/CFS, find grief and loss to be a non-linear process that needs to be addressed throughout their lifespan. Adapting to their new reality may require downsizing their goals to more realistic levels while reassuring them that their sense of purpose does not have to be defined by productivity.

Those with LC may be impacted by the lack of treatment or a cure, moderate-to-severely reduced functioning, worsening symptoms, and ultimately hopelessness about recovery, all of which can be exacerbated by health professionals’ disbelief in their symptoms. This can increase the risk of suicide [46] and thus there is a need for ongoing suicide assessment screening. This is especially important for those with comorbid psychiatric conditions as they are at higher risk for suicidality. Research supports that those with chronic illnesses have higher suicide rates, upwards of 50% higher in comparison to the general population [47]; as a matter of fact, suicide is the leading cause of death with ME/CFS [48]. Therapists should be mindful of this increased risk of suicidal ideation and suicidality among those seeking treatment and closely monitor their safety. For individuals with comorbid psychiatric conditions are likely at an even higher risk for suicidality. MHPs should, therefore, be assessing suicidal ideation from the outset of treatment and periodically during clinical sessions. Assessing risk factors, creating safety plans, and including family and friends in treatment should be considered. Therapists should help patients identify support resources and should also consider being more accessible to patients as they may have limited support.

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Help patients connect with a LC treatment center (if one is accessible) or primary care provider. Each of the patients described in the case studies experienced a myriad of debilitating symptoms, and could ultimately benefit from seeing medical specialists. Survivor Corps has a dynamic international map outlining LC treatment centers (https://www.survivorcorps.com/pccc). MHPs can take an essential role in encouraging patients to locate and enroll in a LC clinic where they can be assessed and treated by a multidisciplinary team. Patients’ expectations of LC clinics need to be managed given the newness of the clinics and the limited interventions available at this time. Given how little is known about LC, like ME/CFS, people are often unprepared for leaving medical appointments without answers, interventions, and a predictable trajectory of the course of their illness. Treatment programs are evolving and patients are encouraged to carefully monitor interventions they participate in to avoid precipitating PEM. Patients should be educated to log and track their symptoms to present to the healthcare professionals.

As we note in the case studies, exhaustion, PEM, dizziness, weakness, and reduced energy are all common. Consequently, the treatment centers may assign a cardiologist or pulmonologist to evaluate and address dysautonomia, POTS, orthostatic hypo/hyper-tension. In identifying these diagnoses, it may provide researchers with clues about the underlying causes for their dysregulation. They each presented with executive functioning deficits and may be referred to a neuropsychologist, and/or a neurologist. It is common for neurologists to uncover challenges such as post-infectious neuropathy. Moreover, other medical disciplines can be useful depending on the presentation of symptoms: a rheumatologist for comorbidities such as fibromyalgia, autoimmune issues; gastroenterologist for IBS, leaky gut syndrome, gastric dysmotility; endocrinologist for thyroid issues, or vitamin deficiencies; and immunologist or allergist for mast cell activation syndrome (MCAS). If a LC treatment center is not readily accessible, the MHP can coordinate care with a LC-aware primary care provider, who can also connect patients with specialists. For primary care providers unfamiliar with LC, MHP can provide links to current resources (For example see, Medical Education Resource Bateman Horne Center: https://Batemanhornecenter.org).

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Accommodations of disability in work and school. While many with LC, like Marc, Daniel, and Lauren, typically ‘crash’ from doing routine activities and may ultimately have to quit their jobs, get fired, or drop out of their academic studies, other options may be available that can be explored with their MHPs. Depending on the severity of symptoms, and the individual’s degree of functioning, school and work accommodations may help enable people to remain functional at lower levels. Toward that end, environmental accommodations have been essential for many individuals with ME/CFS [12,46] and the same situation applies to persons with LC. These include flexible work schedules that enable people to take several breaks throughout the day, and remote work that enables people to work from home, reducing the energy spent on commuting. Additionally, students can be guided in how to manage their course load, and even consider integrating online or asynchronous courses (which allow students to learn on their own schedule, within a certain timeframe, using pre-recorded lecture videos or lessons). Notetakers or readers, extended time for projects, flexibility to study from home or participate remotely and perhaps on-campus tutors may be helpful considerations. MHPs should provide documentation that the patient could submit to schools and/or employers to support their request for accommodations.

We should be mindful that in some cases, regardless of accommodations provided, people living with LC have not been able to remain employed, despite their best efforts. The illness may have negatively impacted their ability to stay awake, process information, concentrate, read/write, and/or sit/stand for periods of time. Recognizing these challenges and providing assessments are essential to explore the option of applying for disability benefits to secure support, and in many cases medical insurance. An experienced MHP is integral in identifying the disability as not mental illness-related. Notably medical disability entitles people to longer term benefits; disabilities attributed to mental health issues are capped after a short period of time.

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When to refer to psychopharmacology. Psychopharmacological interventions need to be carefully considered based on whether there are pre-existing mental health issues, and current, post-illness symptomatology. For example, psychiatry could be very useful to help manage anxiety and depression that began prior to, or due to the impact of living with LC. More specifically, these medications may help to manage symptoms related to sleep, depression, and anxiety. In reviewing our case studies, we did not find evidence of significant premorbid psychological or psychiatric issues among the young adults. As noted previously, having a pre-existing psychological or psychiatric condition does not preclude being diagnosed with LC. The disease itself can lead to dysphoria and low mood which may in turn be exacerbated by the persistent stigma surrounding LC. Moreover, even without a history of anxiety and depression, it is a comorbid issue in LC that needs to be considered and oftentimes treated. The ME/CFS Clinician Coalition (https://mecfscliniciancoalition.org/) website is an excellent resource for healthcare practitioners, including psychiatrists, that provides medication recommendations to help inform dosing related to symptom reduction. Lower dosing and slower titrations have been more efficacious as a result with these types of conditions [9].

MHPs offering support

1. Coping. Clinicians have a host of therapeutic models to help individuals cope with these life-altering chronic conditions. As with any chronic illness, psychological challenges may develop. Anxiety, depression, and hopelessness are often outcomes that mental health clinicians diagnose and treat to improve a person’s quality of life and ability to manage their chronic illness. Recommendations may include resting, pacing activities based on their energy envelope, reducing stress wherever possible, learning to ask for help, managing accommodations to improve functioning and addressing any internalized ableism, shame or guilt, if present [43].

2. Post-exertional malaise (PEM) and pacing. Looking back at our case studies, Marc, Daniel, and Lauren each experienced PEM – what is described as a ‘bone-crushing’ fatigue following even minimal exertion. Typical daily activities (e.g. showering, errands, routine school and career demands), may not be possible given PEM-related exhaustion and impairment. There is growing knowledge about how to manage PEM which may help people function within their energy envelope. The goal of staying below this threshold is to prevent ‘crashing’ – when the body shuts down and takes extended time to recover. Pacing is a self-management activity strategy that is outlined in the MEAction Pacing Guide [49]. A person is active as their energy level allows and may break activities down into more manageable segments. A pediatric guide for children was just released [50]. This pacing guide is a resource for children coping with PEM and their caregivers. Learning to pace themselves by carefully spacing fewer activities helps individuals with LC and/or ME/CFS accomplish essential life functions without over-exerting and ultimately worsening their symptoms. Using the energy envelope approach, by avoiding overexertion, people with LC and/or ME/CFS could avoid setbacks and relapses and also, in some cases, increase their tolerance for activity. This differs from the GET/CBT approach that emphasizes maintaining or increasing activity even when patients experience symptoms. This can be dangerous and lead to overall decreases in function, permanently. In addition, also in contrast to GET/CBT, the energy envelope approach does not challenge patients’ belief in a medical cause for their ME/CFS [37,51–55].

3. Sleep disturbances. Sleep disorders are both a hallmark of the illness and are often a comorbidity. Many individuals report experiencing ‘non-refreshing sleep.’ This, in conjunction with PEM, was underlying Marc’s inability to function and focus well with patients. It prevented Daniel from being able to focus, stay awake and remain clear-headed, and participate in his regular social and work activities. Similarly, Lauren couldn’t focus, dance, or maintain her schedule. MHPs should consider recommending a consultation with a sleep specialist to assess the quality of sleep, sleep apnea, and/or circadian rhythm disorders. An integrated medical/mental health approach can help ameliorate sleep problems. Sleep medications may be useful and the ME/CFS Clinician Coalition (https://mecfscliniciancoalition.org/) website has a list of sleep medications to consider that can be useful in addressing the root causes or drivers of the sleep disruption while the MHP can address the behavioral health aspects of sleep hygiene. In addition to teaching pacing, people should be taught to track their body’s schedule and nap as needed, for self-care.

4. Dealing with individuals unfamiliar with LC. As with ME/CFS, people with LC often encounter friends, family members, co-workers who are unfamiliar with these chronic illnesses, or simply don’t view them as real illnesses. It, therefore, would be helpful for patients to be provided accurate information that can be shared with the extended social network. The full reality of LC is emerging in the scientific literature and in the stories of those living with the illness. Despite the emerging evidence on LC, and the history of post-infectious illnesses like ME/CFS, many are still unfamiliar and consequently assume that all those with LC are either feigning symptoms and will recover with psychological interventions, or will resume full functioning with exercise-based programs. This is simply not a supportive stance and it is not grounded in the reality of those struggling with chronic and debilitating symptoms. When encountering people who stubbornly refuse to believe the LC symptoms and suggest that those with LC are feigning symptoms, it may be advisable for them to reduce contact. Assessing who is/is not supportive is important. Those with LC and/or ME/CFS will fare better when surrounded by supportive, nurturing people who try to understand and lend either emotional or practical support and safety.

5. Role of social media and support. Social Media communities can be an invaluable resource with a wealth of information – the latest research, suggestions to manage symptoms, and emotional support; sometimes even friendships develop. These are key sites that provide updated information to support your work and educate LC physicians as well as patients (Table 2).

Table 2. Online Resources.

The US Clinician Coalition for ME/CFS https://mecfsclinicancoalition.org Bateman Horne Center HTTPS://BATEMANHORNECENTER.ORG Open Medicine Foundation HTTPS://WWW.OMF.NGO MEAction HTTPS://WWW.MEACTION.NET Solve ME/CFS HTTPS://SOLVECFS.ORG Body Politic Covid-19 Support Group HTTPS://WWW.WEAREBODYPOLITIC.COM/COVID19 Patient Led Research Collaborative HTTPS://PATIENTRESEARCHCOVID19.COM/ COVID-19 Longhaulers Advocacy Project HTTPS://WWW.LONGHAULER-ADVOCACY.ORG/ Long COVID Alliance: HTTPS://LONGCOVIDALLIANCE.ORG/ CanCME Research Network HTTP://WWW.ICANCME.CA International Association for CFS/ME HTTPS://WWW.IACFSME.ORG/ME-CFS NIH ME/CFS Research Network HTTPS://MECFS.RTI.ORG/ NIH ME/CFS Medical Research Initiative HTTPS://WWW.NIH.GOV/MECFS/ABOUT-MECFS CDC HTTP://WWW.CDC.GOV/ME-CFS/

Source: Authors.

Conclusion: LC and ME/CFS

To date, millions of cases of COVID-19 have been reported worldwide ultimately resulting in an increasing number of people suffering from LC globally [11]. Many with LC may be bedridden, housebound, unemployed, or will need to withdraw from their academic studies. These losses can lead to financial insecurity, isolation, feelings of loneliness and guilt, and oftentimes hopelessness. People with LC often describe their experience as feeling like a ‘shadow’ of themselves with new limitations in energy, movement, and thinking. They may also experience the loss of family and friends who may not believe in the illness or abandon them because of the influence of an ableist society that still neglects and diminishes chronic illnesses and disability.

MHPs can help people with LC address these challenges as indicated in this article. While MHPs are often helpful in developing illness management skills, a team approach is recommended, as an evaluation by an occupational therapist may be a useful resource to help ensure that any adaptations to activities fall within the person’s energy limitations. In our three case studies, the young adults used a combination of these interventions to better manage their new levels of functioning. Once they were taught strategies to manage their PEM, and sleep disturbances, modifications were made to their expectations and routines, they noted significant changes in their daily functioning; albeit having yet to return to their baseline functioning prior to having contracted the illness.

Clearly, MHPs have an important role in supporting and guiding patients by understanding the complexity of these illnesses and their life altering consequences. Given the relationship between the psychological and medical communities, it would be invaluable for MHPs to play a constructive role in educating the medical community about the nature of these conditions [56]. It is crucial that patients are not blamed for their illness and treated as if their medical condition is psychiatrically caused. Like all chronic illnesses, best practices can be accomplished through understanding the complexity of these multisystem illnesses and providing post-infectious patients with the tools and skills to navigate and cope with their new illness reality. We hope that the lessons shared in this article can help people living with Long COVID and/or ME/CFS, as we all search to find a cure for these complex, chronic debilitating post-infectious illnesses.

Acknowledgements

Special thanks to Mary Dimmock, Adina Goldberg, Glenn Hirsch, M.D., Shalom Feinberg, M.D., Karyn Feinberg, Ph.D., and Joseph Jeret, M.D. for their invaluable feedback in preparation of this article.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by US Public Health Service [grant numbers 5U54AI138370, 5U24NS105535].

Notes on contributors

Neal C. Goldberg

Neal C. Goldberg, Ph.D., NIH ME/CFS Research Network, Community Advisory Committee. Neal holds a doctorate in Psychology from Fordham University with post-doctorate training in both child/adolescent and adult psychotherapy. Neal is a passionate proponent of healing through laughter and empowerment through joy. He founded and is the Executive and Clinical Director of Lev Leytzan: The Heart of Therapeutic Clowning, Inc. Neal collaborated with Open Medicine Foundation to launch Hope & Heart, an initiative to build international awareness for ME/CFS. In addition to the poem and art contributions, the campaign culminated with an original song, “Keeping the Hope,” used an anthem for many with ME/CFS.

Sabrina Poirier

Sabrina Poirier, NIH ME/CFS Research Network, Community Advisory Committee. Sabrina has worked within the private, public and not-for-profit sectors for over 20 years. Her work in politics, education and community development helped shape her perspective and fine tune her approach to meaningful engagement and positive systems change. In addition to her role with the NIH ME/CFS Research Network - Community Advisory Committee, she also serves as a member of the ICanCME Steering Committee, the Chair of the ICanCME Trainee Development/Medical Education Working Group and as a passionate research partner, collaborator and patient advocate. She also served as a Patient Engagement Research Ambassador for CIHR's IMHA Institute from 2018–2021.

Allison Kanas

Allison Kanas, Columbia University, NIH ME/CFS Research Network, Director of Outreach and Community Engagement. Allison has over 20 years of research administration experience beginning at UCLA, UC Irvine and most recently at Columbia University where she was the Director of Strategic Initiatives and Planning for the Center for Infection & Immunity in the Mailman School of Public Health. Allison's primary focus is now ME/CFS research, and she is currently the Director of Outreach & Community Engagement for the NIH ME/CFS Research Network.

Lisa McCorkell

Lisa McCorkell, MPP, Co-Founder, Patient-Led Research Collaborative. Lisa is a person with Long Covid and one of the co-founders of the Patient-Led Research Collaborative, a group of Long Covid patients conducting research and advocacy on Long Covid. She has a masters in public policy and a background in social safety net policy and labor and employment issues.

Carrie Anna McGinn

Carrie Anna McGinn, M.Sc., Patient Advocate/Patient Partner in Research – Long COVID and ME/CFS. Carrie uses her experience of living with Long COVID, myalgic encephalomyelitis and postural orthostatic tachycardia syndrome to advocate for recognition, research and adapted care for post-infectious illnesses. Carrie holds a master's degree in Community Health. Before becoming ill, she worked for over a decade in the fields of health research and evaluation, in the public and not-for-profit sectors. Carrie co-founded “COVID longue Québec Long COVID”, a bilingual, science-driven support group for Canadians with Long COVID. She is also a member of the ICanCME Research Network and one of its working committees, and a patient partner for ongoing Canadian Long COVID research and initiatives.

Yochai Re’em

Yochai Re'em, MD, received his medical degree from NYU School of Medicine prior to his psychiatric training at New York-Presbyterian Hospital / Weill Cornell Medicine, and advanced training in psychoanalytic psychotherapy at Columbia University. He is Clinical Assistant Professor of Psychiatry at Weill Cornell Medicine and Assistant Attending Psychiatrist at New York-Presbyterian Hospital. He has a special interest in psychiatric aspects of Long Covid.

Kathi Kuehnel

Kathi Kuehnel is a lawyer in Michigan. She retired from the auto industry, having held director level positions at Ford in the Chairman's office, Dealer Policy Board (alternative dispute resolution), and State and Local Government. She is active in environmental organizations and the mother of a daughter with ME/CFS.

Nina Muirhead

Nina Muirhead, MD*, BA (oxon) BMBCh (oxon), MRCS, DOHNS, MEd, PGDipDerm, NIH ME/CFS Research Network, Community Advisory Committee, Director Doctors with M.E., Chair CMRC Education Working Group, Dermatology Surgeon, UK National Health Service. Dr. Muirhead is a specialist surgeon in dermatology in the UK National Health Service who has Myalgic Encephalomyelitis. She is a director of Doctors with ME, graduate of Oxford University, UK, and has written a number of popular medical textbooks. Dr Muirhead educates other doctors about ME/CFS and co-chairs the Attitudes and Education working group for the Department of Health and Social Care Delivery Plan on ME/CFS.

Tahlia Ruschioni

Tahlia Ruschioni, NIH ME/CFS Research Network, Community Advisory Committee. Tahlia has over 17 years of experience working in and creating medical education for hospital and clinic systems, state community center boards, and medical universities. Her diverse healthcare background serves her role as Education Director at the Bateman Horne Center (BHC) where she is expanding healthcare professional knowledge of multisystem diseases such as ME/CFS, fibromyalgia, long COVID, and related comorbid conditions. She serves as a member of the ICanCME Trainee Development and Medical Education Working Group and is an active member in the NIH-funded Collaborative Research Centers Network's Community Advisory Committee.

Susan Taylor-Brown

Susan Taylor-Brown, Ph.D., MPH, NIH ME/CFS Research Network, Community Advisory Committee. Susan is a clinical professor of Pediatrics (Ret.). Susan's career in health care included teaching, research and clinical services at the University of Pittsburgh, Eastern Michigan University, Syracuse University, Nazareth College, and Golisano Children's Hospital, University of Rochester Medical School. As a person living with ME/CFS, Taylor-Brown advocates for the inclusion of patient partners in ME/CFS and LC research and clinical care with a specific focus on decreasing the stigmatization of both illnesses.

Leonard A. Jason

Leonard A. Jason, Ph.D., is a professor of psychology at DePaul University and the Director of the Center for Community Research. He has been studying the epidemiology and diagnostic issues involving ME/CFS for the past 30 years.