Help Is Out There for COVID ‘Long Haulers’

Article By: Ana M. Palacio, M.D., MPH and Nancy Klimas, M.D

The road to recovery for post-COVID-19 syndrome may not be quick, but it should not be lonely.

THE FACT THAT thousands of people are experiencing persistent symptoms after COVID-19 has become undeniable. The data shows that many COVID-19 survivors remain unable to return to pre-COVID level of activities months after diagnosis, and the numbers are growing.

What is also undeniable is how ill-prepared the health system seems to be to meaningfully help these COVID "long haulers" return to wellness. In fact, the presentation of this apparent post-viral syndrome has stumped experts and clinicians who have struggled to find guidance on how to treat the condition. This hard reality has prompted long haulers to create or join social media-based support groups in search of answers, advice or, at the very least, solidarity.

Importantly, the constellation of post-viral infection symptoms described by the long haulers is far from new. In fact, similar issues have been described after the severe acute respiratory syndrome (SARS) outbreak in 2003 and in relation to infections with Epstein Barr virus (a cause of mononucleosis) and other exposures. Public health experts have acknowledged that the persistent post-COVID symptoms are eerily similar to those of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a well-described complex neurological condition that is often triggered by serious infections.

The question, then, is: Why are we so stumped by these post-COVID long haulers?

The answer is as simple as it is distressing. Even though millions of people suffer from ME/CFS, something that costs the U.S. economy up to $24 billion annually, we still invest very limited resources in researching the disease or educating health care providers about it. Moreover, from the relatively small annual budget dedicated to ME/CFS, almost no funds go to clinical trials to provide biology-based treatments. If the post-COVID viral syndrome is in fact similar to or the same as ME/CFS, the limited research to date will lead to challenges and delays in the treatment of the long haulers. Yet experts agree that the optimal time for intervention is at the beginning of an illness, not after it has been established for years and decades.

What might a COVID-19 long hauler expect when they come to a physician? Unfortunately, very limited knowledge.

Many medical providers have not received training on how to diagnose or treat the types of complex multiorgan disease triggered through the disruption of immune, endocrine, nervous and cardiovascular systems. Moreover, this lack of training has perpetuated the stigma that ME/CFS and similar conditions are not real. This is aggravated by the lack of a diagnostic test and the fact that most of the usual medical tests, ordered for nonspecific symptoms such as fatigue, are likely to show no abnormalities.

Although these results can provide relief that the cause of a patient's problems is not cancer or organ failure, the related "everything seems to be fine" talk minimizes the patients' symptoms, invalidates their experiences and marks the beginning of a lonely road. Patients blame themselves for not shaking symptoms off. As time goes by, they may perceive or be outright told that their symptoms are psychological, implying they just need to try harder to feel better. Since ME/CFS appears to be an inflammatory brain condition that can also cause anxiety or depressive symptoms, many patients are referred to mental health services, reinforcing the perception that the problem must be "in their heads".

To be sure, there is increasing recognition that treating post-COVID-19 syndrome will require biologic and holistic approaches, as well as extensive research. These insights have led to the creation of treatment centers to try to assist these patients. Experts have published management guidelines that can aid these centers.

However, initial approaches may create challenges. Although protocols that emphasize physical therapy and cardiovascular and respiratory rehabilitation offer a correct approach in general – particularly for those who were hospitalized – there are important caveats. Many patients with disabling symptoms will have normal respiratory and cardiac function, and related tests, although necessary, may not clarify the cause.

In addition, the traditional type of physical therapy recommended for ME/CFS by what is now considered a flawed study can backfire and make symptoms worse. In fact, research has shown that pacing is a pivotal component in the management of ME/CFS. Rehabilitation should be personalized, go slow and be monitored for relapse, recognizing that neuroinflammatory illness can "flame on" when pushed too hard.

As physicians and investigators ourselves, we understand the challenges of creating treatment guidelines in the absence of a significant body of research. However, while studies are being conducted, we ought to use the evidence that does exist on ME/CFS and related conditions, such as mast cell activation, to deploy the multidisciplinary approaches that patients desperately need. Our own experience with ME/CFS compels us to advise our colleagues to make sure patients feel heard and believed and to review the literature for approaches reported to work. Strategies that address oxidative stress and inflammation, as well as those that reduce triggering exposures and assist in cell-based recovery, are usually safe and can be effective.

We also have a message for COVID-19 survivors and their families: You are not alone, and there are millions of patients who have experienced a condition similar to yours – many of which have found a way to heal. Health care experts investigating or specializing in these conditions do exist and can provide valuable information. As you connect to the right resources, please know three things: First, even though tests may come back normal, your symptoms are real. Second, people can get better by following the right personalized treatment approach. And third, family support is a big component of being able to cope and recuperate. Ask your family and trusted providers for help finding information or health care professionals with experience treating ME/CFS. In the meantime, activities that strengthen vagal tone and balance the autonomic nervous system tend to be safe and useful. These include meditation, singing and laughing, as well as positive affirmations and positive visualization exercises.

The information to date suggests that the road to recovery for post-COVID-19 syndrome may not be quick, but it should not be lonely. As usual, knowledge and empathy are the best instruments to really help people suffering from disabling conditions. We encourage everyone to use them.


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