Long Covid & ME

Understanding the connection

Thousands of COVID-19 “long haulers” across the world, many of whom had mild cases, are not recovering after contracting SARS-CoV-2.  Dr. Anthony Fauci has warned repeatedly of the risk for COVID-19 patients to develop myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).

The pathway to recovery or diagnosis for COVID-19 long haulers will not be uniform.  Some long haulers will recover, a subset will go on to develop chronic illnesses like ME/CFS or POTS, and some will have organ damage that contributes to lasting symptoms.

ME/CFS is not the symptom of long-term fatigue alone; rather, it is a complex chronic disease, with symptoms in every body system.  Some long haulers are reporting symptoms that resemble ME/CFS, including the hallmark symptom of ME, post-exertional malaisea worsening of symptoms after physical or cognitive exertion.  

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% survivors met CFS criteria several years after developing SARS.  

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.

 

Canadian Consensus Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome[3]
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.
1
Fatigue

Required

The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.
2
Post-exertional malaise and/or post-exertional fatigue

Required

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.

3
Sleep dysfunction*

Required

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.
4
Pain*

Required

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.
5
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.

6
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

 
7
The illness persists for at least six months

Required

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

Join our Facebook support group for COVID-19 long haulers. This group is a space for COVID-19 long haulers who suspect they may have ME.

If you are a long hauler experiencing symptoms of ME, take these steps:

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.

2. 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, may actually be counterproductive for someone with ME/CFS, so getting a 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.

3. 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.”

One study has shown that patients with ME/CFS who were given a period of enforced rest from the onset had the best prognosis for recovery.  People with ME are encouraged to pace themselves. Patients who pace well are active when able, and rest when tired, and may plan extra rest ahead of strenuous activities.  

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 illnesss, 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.  

4. Find Support

  • Join our Facebook support group for long haulers.

  • Find a doctor who is knowledgeable about ME. See our list of crowd-sourced clinicians knowledgeable about ME in your hometown. 

5. Take Action

For nearly four decades, the NIH has FAILED to invest in researching ME, and we are seeing that same neglect repeat itself with long COVID.

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

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