RESOURCES FOR COVID-19 “LONG-HAULERS” FROM THE ME/CFS COMMUNITY

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A growing number of people report persistent symptoms long after being infected with the SARS-CoV-2 virus. The “long-haulers,” a name coined for long-term COVID-19 patients, experience ongoing fatigue, headaches, shortness of breath, muscle pain, sleep disturbances, cognitive impairments, intermittent fevers, and more. Many long-haulers reveal that these and other symptoms often worsen after attempting simple daily activities and mild exercise, placing some in a never-ending loop of illness and disability.

Severity of COVID-19 and age appear to be poor predictors of who goes on to experience long-term complications in the aftermath of COVID-19. According to a recent article in the Atlantic, around three in five people struggling to recover are between the ages of 30-48, people in the prime of their lives. The notion that COVID-19 is a mild and brief illness for most ignores the true risk of this disease.

Although the focus remains on preventing and treating COVID-19, those who survive the illness are far from being placed in the “recovered” tally and still remain unable to return to their pre-COVID lives. This has the potential to place a further drag on the economy, especially if sufferers remain ill and disabled over the long-term.

The Dangers of Exercise with Post-Viral Conditions

Making matters worse are doctors who trivialize long-term COVID patients seeking help. Many have been told that stress and anxiety are hampering their recovery and are advised to push through their illness and exercise, even though mild exertion can trigger a return of symptoms or cause further cardiac and pulmonary complications

Paul Garner, an infectious disease professor in the Liverpool School of Tropical Medicine, makes the distinction between those still suffering from the later manifestations of the disease versus those who are experiencing symptom exacerbation after pushing too hard. 

In a blog published in the British Journal of Medicine, Garner writes, “I suspect people recovering at home and their doctors…do not realize it may be exertion—both mental and physical—that is causing their symptoms to return. Without instituting careful pacing, people suffer, and their recovery is delayed.” 

It is important to understand the range of potential complications that can arise in post-viral conditions. Standard rehabilitation approaches (i.e., graded exercise) may be harmful and worsen prospects for recovery in the subset of long-haulers who experience symptom exacerbation after physical and cognitive activity.

COVID-19 and Post-Viral ME/CFS

It is unclear what is driving the prolonged symptoms in long-haulers and how long they will last. Is this the natural course of a SARS-CoV-19 infection for a subset of people? Is this a form of post-viral fatigue? Or are the long-term symptoms indicative of myalgic encephalomyelitis (ME also called ME/CFS), a debilitating neurological disease often triggered by viruses? Dr. Anthony Fauci has stated that symptoms experienced by long-haulers resemble those seen in patients with ME. It may be too early to tell, and it will likely be months before we have a better understanding of the trajectory of this novel virus. 

Previous coronavirus epidemics offer some clues about what might be in store for some COVID-19 patients over the long run. Following the SARS pandemic in 2002-2003, nearly all patients experienced long-term impacts on physical health. In a small study, only 13% of Toronto health care workers reported feeling completely recovered 12 months after infection with the SARS virus. A UK study showed similar results, with most patients still experiencing impairments six months after their infection. Another study showed that ~30% of Hong Kong SARS survivors met the CDC’s criteria for chronic fatigue syndrome (CFS). Another Toronto study following patients for several years after SARS found symptoms consistent with ME/CFS, suggesting the complications may persist. Data from COVID-19 patients in Italy show a similar pattern.

The ME-COVID-19 Long-Hauler Connection

The ME community has many insights to offer to long-haulers as they adjust to their new reality and wait for further medical clarity. People with ME have extensive experience in pacing activities as a tool for managing energy levels and preventing crashes. ME patients have learned how to navigate the medical system with a complex multi-system illness and have advice on how to handle medical gaslighting. The community also has excellent resources on how to successfully apply for disability benefits. If long-haulers remain sick, they will need physicians who can determine if their long-COVID symptoms are, indeed, indicative of ME.  

Not all COVID long-haulers will end up fitting the ME diagnostic criteria, and some may have additional medical needs, but many of the strategies used to manage ME could be helpful for those struggling to recover from COVID-19. 

Resources for Long-Term COVID from the ME Community

#MEAction is a non-profit organization that advocates for increased research funding and better care for people with ME. We are reaching out to long-haulers and medical professionals to provide helpful resources.

For Patients:

#MEAction seminar for long-COVID patients. #MEAction will host a seminar for people struggling to recover from COVID-19 this Friday, August 7, at 11am PST. The seminar will feature Dr. Lucinda Bateman, MD, an internationally-recognized ME clinician and a panel of three people with ME who will share their experiences with pacing and energy management, advocacy in the clinician’s office and beyond, and the emotional/social aspects of having ME. Unfortunately, the seminar is already full, but you can click here to join our mailing list and be the first to hear about seminars in the future! We will also be recording the seminar and you can check it out at a later date 

Seminar on how to win disability benefits with post-viral ME. Kantor & Kantor Law hosted a webinar recently with Christopher Snell, PhD, an expert on energy metabolism from Workwell Foundation, and Teresa Dowell, PA, an ME clinician, to discuss how to successfully navigate the disability benefits process with long-COVID and ME. Click here to see a video recording of the webinar.

For Healthcare Providers: 

#MEAction seminar on post-viral ME/CFS for clinicians:
Featured speakers will include Dr. Lucinda Bateman, MD, co-author of ME/CFS diagnostic criteria for adults and founder and Director of the Bateman Horne Center; Dr. Katherine Rowe, MD, the lead researcher and clinician on the Pediatric ME/CFS Primer; and Dr. Mark VanNess, PhD from the Workwell group, the United States’ preeminent research and clinical group on exercise science in ME. Date: August 29 @ 3:00 pm EST. For more information and to register, click here. To download and share the flyer on the seminar, click here. Remember to click the registration button rather than solely ‘adding to your calendar’. Please pass this information along to your healthcare providers.

Workwell Foundation MedBridge course on identifying and managing ME/CFS.
Workwell Foundation offers a 2-part continuing education course for physical and occupational therapists through Medbridge that addresses many of the complex issues facing the rehabilitation of long-term COVID-19 patients. Workwell has dedicated over 20 years of research to understand the metabolic, pulmonary, and cardiac complications of people suffering from post-viral ME/CFS.

IACFS/ME Meeting. The International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) will be hosting its annual meeting virtually on August 21 from 10am-3pm EST. A portion of the meeting will also be devoted to COVID-19 and its relevance to ME/CFS research and clinical care. Click here for more information. This conference welcomes patients as well.

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