Long Covid

Some survivors of COVID-19 have lingering symptoms long after their initial illness, regardless of their initial infection severity. Long Covid can a be devastating and life changing illness. The below information is for long haulers, their loved ones, and anyone else who wants to learn more about this growing health crisis.

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Have you had COVID-19?

Click here to register for the You + ME Registry Long Covid Study

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What is Long Covid? What are the symptoms?

Long Covid is also known as Post-acute COVID-19 syndrome (PACS), Post Acute Sequelae of COVD-19 (PASC), COVID Long Haulers, or Long-term COVID-19.

These terms describe a collection of lingering symptoms devastating the lives of many COVID-19 survivors. The World Health Organization (WHO) published a definition of Long Covid in October 2021: “Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis.” The WHO estimates that 10 to 20% of COVID-19 patients experience lingering symptoms, although more research is needed to get a true picture of the extent of Long COVID.

Long COVID symptoms include, but are not limited to:

  • Fatigue
  • Difficulty breathing or shortness of breath
  • Post exertional malaise (worsening of symptoms following even minor physical or mental exertion)
  • Cognitive impairment (brain fog)
  • Hair Loss
  • Pain
  • Headache
  • Fast-beating or pounding heart
  • Fever

The American Academy of Physical Medicine and Rehabilitation (AAPM&R) has created a PASC Dashboard to estimate those affected including state and county-level data and trends over time.

ME/CFS and other Post-Viral Conditions:

Many of the symptoms of Long COVID are like those experienced by patients with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), chronic autonomic dysfunction and postural orthostatic tachycardia syndrome (POTS), and Fibromyalgia. Mast cell activation symptoms (MCAS) are increased in Long COVID patients and there are indications that Long COVID may be an autoimmune reaction, as seen in autoimmune diseases.

ME/CFS is a complex and debilitating multi-system, chronic disease often associated with viral infections. Up to 80 percent of cases of ME/CFS are initiated by an infection. At this time, the cause of ME/CFS is not fully understood. There is no diagnostic test, no FDA-approved treatment, and patients often suffer for life.

History shows that when a severe infection like COVID-19 sweeps through the population, ME/CFS often follows. Prior studies of other viral outbreaks, including SARS, MERS, West Nile virus and even Ebola, show long-term symptoms akin to those seen in ME/CFS in the aftermath of acute infection, ranging from 11 to 90%. Cases of ME/CFS may double as a result of the pandemic.


What should I do if I think I have Long COVID?

Click here to take our short quiz based on criteria identified by Long Covid clinicians and researchers to see if you may have Long Covid. While we cannot provide medical advice, we hope this simple quiz, which is grounded in science, is helpful in understanding your symptoms.

The Centers for Disease Control and Prevention (CDC) has issued interim care guidance for Long COVID (click here). If you may have Long Covid or ME/CFS, Solve M.E. strongly encourages you to adopt pacing, or activity management, at a level that fits your current health and energy capacity. Many studies and reports from people with ME/CFS show that exercise or intense exertion at the early stages of illness leads to significantly worse long-term health outcomes and potential disability.

“Pacing refers to spacing out your activities during the day so that you’re able to stay within the limits of what your body can handle without exacerbating your symptoms. Another way to think of it is that pacing is a way to keep you inside your ‘energy envelope’—the envelope that contains your energy stores for any given day.”

— Toni Bernhard J.D., Pacing: The Chronically Ill Person’s Best Friend

Resources for Pacing:

Exploring a New Diagnosis:

Finding Medical Care:

Recovery from COVID-19 is posing a new set of challenges for patients and physicians alike. There is so much we don’t know about Long COVID, but we can draw from the expert knowledge of clinicians who treat similar illnesses. Note that Solve M.E. does not have professional medical relationship with these clinicians and cannot confirm the expertise or quality of care provided by these clinics – only that other patients have utilized them.

Employment, Paid Leave, and Disability Resources:

Community and Peer Support:

“To the COVID-19 patients who are searching for information, support, and community, these are the things I wish someone had told me when I became ill.”

— Jennifer Diamond, MA, LMFT, COVID-19 Long-Haulers and the Burden of Doubt

  • Body Politic Support Group (Slack platform) – a slack support group with members from all over the world who are experiencing symptoms of or are recovering from COVID-19. Hosted by Body Politic is a queer feminist wellness collective, event series, and media company.
  • COVID-19 Longhauler Advocacy Project (Facebook group) – created by a Covid-19 Longhauler for other Longhaulers and those seeking education, support and who would like to help raise awareness.
  • Long Covid Support Group (Facebook group) – a private group for people with Long Covid or people who are caring for someone with Long Covid.
  • #MEAction Long COVID-19 Group (Facebook group) – for long-COVID patients to connect with experienced ME/CFS patients. 

  


How can I tell the difference between symptoms of ME/CFS, COVID-19, or the Flu / Common Cold?

Because some of the symptoms of ME/CFS, flu, cold, and COVID-19 can be similar, it may be hard to tell the difference between them based on symptoms alone, and testing may be needed to help confirm a diagnosis. Both ACUTE COVID-19 and Flu can have varying degrees of signs and symptoms, ranging from no symptoms (asymptomatic) to severe symptoms and death. Similarly, the symptoms of ME/CFS can vary in severity and frequency. It is common for people with ME/CFS to experience periods of improvement, periods of relapse, and “crashes” where symptoms worsen with a devastating impact on quality of life. Our understanding of Long Covid symptoms is still evolving and more research is needed to further define this condition.

Here’s a chart of the most common symptoms of Cold, Flu, Acute COVID-19, Long Term COVID-19, and ME/CFS.


How can I participate in research about Long Covid and ME/CFS?

The You + ME Registry + Biobank is a collection of patient-reported data and biological samples (e.g. blood) from people living with ME/CFS, people with Long Covid, and healthy volunteers. Our large, rich dataset is used by researchers searching for treatments and a cure. Help uncover causes and identify treatments for ME/CFS, Long Covid, and other post-viral illnesses.

Visit the Long COVID Alliance for a list of studies, clinical trials, and research opportunities.


Where can I find additional resources about Long Covid?

Webinars:

Check out this COVID-19 and ME/CFS Webinar playlist: https://www.youtube.com/playlist?list=PLbO5abv0daLXu0TZwgSPKgxDgO5IPQGgB

From the Experts:


Additional Information for