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The Impact of Long COVID on ME/CFS Research and Care

Even before the COVID-19 pandemic and the emergence of long COVID for many people following an infection or reinfection, a large number of individuals lived with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). This lifelong condition has struggled for sufficient scientific research and recognition in the medical field in recent years. Even milder cases can have symptoms that interfere with someone’s daily tasks like weakness, brain fog, and headaches.

ME/CFS can affect many organs and bodily functions and not enough specialists are available to properly diagnose and recommend effective methods to manage symptoms. Another issue is that too many physicians still dismiss ME/CFS symptoms as being psychosomatic and not taking a patient seriously.

Long COVID and ME/CFS have a significant overlap in their possible symptoms, and both have required advocating to obtain medical legitimacy even when both conditions cause chronic struggles in people’s lives. The community of long COVID patients has been vocal from the beginning and stood up to be heard like ME/CFS ones. While the pandemic has shifted already limited resources from ME/CFS, long COVID may bring positive changes to how medical research approaches both illnesses.

An Increased Demand for Specialized Care and Need for Education

When American doctors formed an official group of ME/CFS specialists in 2018, their low number of about a dozen demonstrated the scant resources the condition has for research and care. Even when those specialists are willing to help as many people as they can, their ranks are not sufficient to address even the most conservative estimation of 800,000 people with the condition in the U.S.

Another factor to these doctors’ overwhelm is the need to educate more physicians to spread awareness and understanding about ME/CFS. Teaching other clinicians is not only important to increase their number but to spread critical knowledge to avoid accidentally increasing patients’ symptoms. Indeed, one of the main ME/CFS symptoms is post-exertional malaise (PEM) where even low-level physical or mental exertion can result in a flare-up. Many doctors recommend physical activity for a wide range of health conditions, but this advice can be detrimental to individuals with ME/CFS.

The emergence of long COVID also resulted in an additional need for ME/CFS doctors as their experience with a similar condition allowed them to get a more accurate evaluation and offer useful recommendations to those new patients. This exponential strain on the few ME/CFS specialists, many of them over the age of 60 and/or who live with this medical condition, has taken a dysfunctional system to its breaking point. Many doctors who have the necessary knowledge to address ME/CFS and long COVID hope that medical school, textbooks, and already practicing doctors can receive training on those conditions. This plays a central role in expanding appropriate care access to those who need it.

Systemic Challenges for Individuals with ME/CFS

Issues facing those who live with ME/CFS go beyond the availability of specialists and medical recognition of the condition. The American healthcare system is another significant hurdle due to its model of shorter medical appointments. Most insurance providers want doctors to keep their visits short, but specialists usually need one hour to make any sort of progress with ME/CFS patients and anyone who requires complex assessments and treatment.

Another common side effect of seeking a ME/CFS diagnosis is that co-occurring illnesses often happen. ME/CFS may occur with other conditions like Ehlers-Danlos syndrome or fibromyalgia. Identifying specific symptoms and condition(s) takes time and usually multiple appointments and evaluations to rule out other illnesses.

Facing systemic dismissal from physicians who do not take ME/CFS, or long COVID, seriously can interfere with obtaining a diagnosis and adequate care. This can especially happen due to how those conditions can affect women more than men and how the medical field has historically disregarded women’s symptoms and pain.

How Long COVID and ME/CFS Research and Knowledge Can Benefit Each Other

While long COVID and ME/CFS share many possible symptoms, developing ME/CFS following a COVID-19 infection or reinfection is also possible. COVID-19 can trigger latent conditions or exacerbate what used to be mild ME/CFS symptoms if someone never received an assessment and/or diagnosis before. Most ME/CFS knowledge of the condition and available methods to manage symptoms can help those with long COVID.

While patients with both conditions advocating for themselves and reaching medical recognition is important, doctors who can educate and care for those patients also continue their work toward the same goals. More resources are needed for further research and treatment of those similar conditions. Many hope that the wider visibility of long COVID may benefit ME/CFS awareness and research too.

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