Long Covid & ME
Understanding the connection
An estimated 20 million* people with Long COVID worldwide have not recovered from COVID-19. The majority of people with Long COVID had ‘mild’ cases and were not hospitalized; even asymptomatic COVID-19 has triggered Long COVID.
Dr. Anthony Fauci warned repeatedly of the risk for COVID-19 patients to develop myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) or ME/CFS.
‘Long haulers’ are not a uniform group, and the constellation of symptoms they are reporting are not new or mysterious. While all people with Long COVID share the experience of being ill for more than 2-4 weeks, patients’ symptoms and complications vary and are resulting in distinct diagnoses.
Some will ultimately recover. Others will have organ damage and/or may go on to develop chronic illnesses such as ME/CFS, autonomic disorders, mast cell activation syndrome (MCAS), or an autoimmune disorder. It is important that physicians recognize these and other differential diagnoses, and treat patients with Long COVID accordingly.
A study in The Lancet by the Patient Led Research Collaborative for Long COVID shows that symptoms of ME/CFS are the main concern for long haulers, including the cardinal symptom of ME/CFS: post-exertional malaise. Post-exertional malaise, or PEM, is a flare of symptoms and/or the appearance of new symptoms after trivial physical or cognitive exertion, often appearing a day after the triggering event.
The NIH’s National Institute on Neurological Disorders and Stroke (NINDS) published an article explaining the overlapping symptoms between post-acute covid syndrome (PACS) and ME/CFS.
“Through these studies, we hope to identify new targets for therapies and preventive measures and to soon welcome a future in which no one must live with ME/CFS or PACS,” wrote Nina Schor, M.D., PH.D., deputy director of NINDS.
ME/CFS is a complex chronic disease, with symptoms in every body system.
Studies show that viral outbreaks often lead to post-viral illnesses, like ME/CFS. In fact, SARS-CoV-2 is not the first coronavirus to result in documented ME/CFS. One study on SARS showed that 27% of survivors met CFS criteria several years after developing SARS.
If you are a clinician, take our CME on long COVID here.
*20 million is a conservative estimate, based on the recorded incidence of COVID-19 (208M cases as of 8/18/21) and a turnover rate of 10% to ME/CFS. This is the lowest likely rate: one third of patients with COVID-19 report symptoms that last for >1 month.
For Long haulers with ME symptoms:
Symptoms of ME/CFS
The Canadian consensus criteria (CCC) or the Canadian working definition are a set of clinical criteria for ME/CFS created by an international cohort of researchers and clinicians, frequently used as a case definition in research and the preferred set of diagnostic criteria in a poll of ME researchers and medical experts. Adults are diagnosed after a minimum of six months of illness and children after a minimum of three months.
|A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of (a) autonomic, (b) neuroendocrine and (c) immune manifestations; and adhere to item 7.|
|The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.|
Post-exertional malaise and/or post-exertional fatigue
There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional malaise and/or post-exertional fatigue and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen.
There is a pathologically slow recovery period – usually 24 hours or longer.
|There is unrefreshing sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms. Note that patients without sleep dysfunction can still meet the diagnostic criteria if their illness began with an infection — see * below.|
|There is a significant degree of myalgia. Pain can be experienced in the muscles, and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new type, pattern or severity. Note that patients without pain can still meet the diagnostic criteria if their illness began with an infection — see * below.|
Neurological / cognitive manifestations
Two or more
Two or more of the following difficulties should be present:
Ataxia, muscle weakness and fasciculations are common. There may be overload1 phenomena: cognitive overload, sensory overload (for example photophobia and hypersensitivity to noise) and/or emotional overload, which may lead to crash2 periods and/or anxiety.
Autonomic, neuroendocrine, and immune manifestations
At least one symptom from two of the following categories
At least one symptom from two of the following three categories:
(a) Autonomic Manifestations
(b) Neuroendocrine Manifestations
(c) Immune Manifestations
The illness persists for at least six months
|It usually has a distinct onset,** although it may be gradual. Preliminary diagnosis may be possible earlier. Three months is appropriate for children.|
To be included, the symptoms must have begun or have been significantly altered after the onset of this illness. It is unlikely that a patient will suffer from all symptoms in criteria 5 & 6. The disturbances tend to form symptom clusters that may fluctuate and change over time. Children often have numerous prominent symptoms but their order of severity tends to vary from day to day.
* There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset.
** Some patients have been unhealthy for other reasons prior to the onset of ME/ CFS and lack detectable triggers at onset or have more gradual or insidious onset.
1 “Overload” refers to hypersensitivities to stimuli that have changed from pre-illness status.
2 "Crash" refers to a temporary period of immobilizing physical and /or cognitive fatigue, also known as post-exertional malaise.
Click above to learn more about symptom presentation of ME/CFS
1. Watch the seminar: ME & Long Covid: What's the connection?
#MEAction and Body Politic hosted a seminar for long haulers to learn about ME as a potential diagnosis. In the seminar, an ME expert clinician explains symptom presentation and diagnosis, and people with ME provide advice on managing your symptoms and advocating for yourself. You can watch from this page, or find all the resources associated with this seminar here, including recommended resources and video clips.
3. Get a Diagnosis
ME/CFS may not officially be diagnosed until the patient has consistently shown symptoms for 6 months. However, a clinician can still provide a working diagnosis and begin to treat the patient.
Treatments that are beneficial for other diseases that long haulers are experiencing, such as POTS, could be counterproductive for someone with ME/CFS, so getting the right diagnosis is important.
The cardinal symptom of ME is post-exertional malaise (PEM). PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. While PEM is often studied in relation to physical activity, cognitive overexertion or sensory overload may also initiate PEM.
4. Stop, Rest & PACE
Long haulers who are exhibiting symptoms of ME/CFS should rest as often as needed, especially at the onset, and should NOT attempt to “push through” or force themselves to exercise or “recondition.”
People who experience post-exertional malaise are encouraged to pace. Pacing well means being active when able, resting when tired, and planning extra rest ahead of strenuous activities, if necessary.
It may take time for long haulers to learn how to live within the limits of their “new normal,” especially if family, friends or employers are not supportive of their reduced functioning, but it is vital that they listen to their bodies for the best chance of recovery.
Pacing vs Graded Exercise People with ME/CFS should NOT undertake graded exercise therapies or push themselves to recondition. While graded exercise may be useful in patients who are deconditioned after surgery or a severe illness, graded exercise does not address the global metabolic changes and atypical reactions to activity that cause symptoms in people with ME.
Because post-exertional malaise is the hallmark symptom of ME, programs that gradually increase exercise may do more harm than good. A recent, large-scale survey found that 80% of people with ME found no benefit or significantly worsened on graded exercise regimens.
Scientific evidence shows that people with ME/CFS experience physiological abnormalities in their response to exercise, including reduced blood flow to the brain and heart, reduced oxygen uptake in hemoglobin, reduced oxygen utilization, and abnormal gene expression, which can explain the short-term consequences and long-term setbacks induced by repeated overexertion.
The CDC does not encourage exercise for ME, and has stated that graded exercise may cause harm. Likewise, World Physiotherapy recommends focusing on rest, hydration and nutrition for people recovering from COVID-19 who are showing signs of ME.
5. Take Action
For nearly four decades, the NIH has FAILED to invest in researching ME.
Recently, #MEAction investigated the NIH’s plans for researching long COVID and came to this conclusion: The NIH has no comprehensive, strategic plan to urgently address long COVID.