Identifying Long Covid
- Quick Facts
- Common Symptoms & Associated Syndromes
- In-office Assessments
- Laboratory Testing
- Symptom Management
This page is specifically intended for medical providers. All information provided on and through this website is provided for informational purposes only.
1. Quick Facts
“Long Covid” is used to describe Post-Covid medical conditions, IE: post-acute sequelae SARS-CoV-2 infection (PASC).
Diagnosis can be made using the code U09.9 Post COVID-19 condition, unspecified, the CDC states after 4 weeks of illness.
Individuals do not need to have had a positive COVID test for diagnosis, according to the CDC due to SARS-CoV-2 RT-PCR and antigen testing availability and sensitivity.
Explore other possible conditions. Many Long Haulers acquire new conditions after infection that require further investigation.
Acute COVID-19 severity does not necessarily predict subsequent or ongoing symptoms.
Long Covid is not rare.
The CDC is reporting that 1 /5 of adults who contract COVID will develop a Post-Covid Condition.
The American Academy of Pediatrics states that Long Covid is affecting children and adolescence and references United Kingdom Office for National Statistics estimate:
– 12.9% of children 2 to 11 years of age
– 14.5% of children 12 to 16 years of age
still experienced symptoms 5 weeks after infection.
All patients who test positive for a SARS-CoV-2 infection should have at least one follow-up appointment with emphasis on cardiac symptoms.– The American Academy of Pediatrics
2. Common Symptoms
Severe exhaustion, weakness, headaches, cognitive issues with memory & concentration , shortness of breath, wheezing, light & sound sensitivity, low blood pressure and / or high heart rate, fainting, body pain, tingling, pins and needles, internal vibrations, shaking, stomach pain, rashes, itching, red eyes, inflammation, heart palpitations, reoccurring fevers, chills, nausea, sore throat and / or sniffles, general sense of being “unwell.”
“Patients with post-COVID conditions may share some of the symptoms that occur in patients who experience myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, post-treatment Lyme disease syndrome, dysautonomia, and mast cell activation syndrome.”
– Centers for Disease Control and Prevention
System-based conditions reported following SARS-CoV2 infection via the CDC
Mayo Clinic Proceedings
“Dr. Lucinda Bateman, reviews this consensus statement appearing online early and in the November 2021 issue of Mayo Clinic Proceedings. Key diagnostic criteria for this debilitating post-infection condition to aid clinicians in recognizing the signs and symptoms for this hard to diagnose disease. She notes people experiencing long COVID syndrome may double this patient population making it essential for clinicians to recognize, diagnose, and treat these patients as early as possible.”
Available at: https://mayocl.in/37wG94D
3. In-office Assessments
Information from the CDC:
Caring for People with Post-COVID Conditions
Information from the AAP:
Post-COVID-19 Conditions in Children and Adolescents
- Pediatric Considerations
- Functional status and / or quality of life
- Respiratory conditions
- Neurologic conditions
- Connective tissue
Based Guidance from The American Academy of Pediatrics
People who test positive for SARS-CoV-2 should not exercise until they are cleared by a physician.
In-person visit recommended for:
• Patients with moderate or severe acute infection
( >4 days of fever, chills, body pain, lethargy.)
– AND / OR –
• Patients with lingering symptoms regardless of acute infection severity
Telehealth visit recommended for:
• Asymptomatic or mild cases that no longer show signs or symptoms
Guidance for Return to Play after COVID-19 Infection
Adapted from the AAP COVID-19 Interim Guidance: Return to Sports and Physical Activity
A chart that summarizes the guidance regarding clearing athletes to return to play:
The in-person follow-up assessment for those with moderate or severe cases and those with lingering symptoms should include the American Heart Association 14-element screening evaluation with special emphasis on cardiac symptoms including:
• Complete physical examination
• Chest pain
• Shortness of breath out of proportion for upper respiratory tract infection
• New-onset palpitations
• Complete physical examination
The American Heart Association 14-Element Cardiovascular Screening Checklist for Congenital and Genetic Heart Disease
14-Element Cardiovascular Screening Checklist
Chest pain/discomfort/tightness/pressure related to exertion
Excessive exertional and unexplained dyspnea/fatigue or palpitations, associated with exercise
Prior recognition of a heart murmur
Elevated systemic blood pressure
Prior restriction from participation in sports
Prior testing for the heart, ordered by a physician
Premature death (sudden and unexpected, or otherwise) before age 50 attributable to heart disease in ≥1 relative
Disability from heart disease in close relative <50 y of age
Hypertrophic or dilated cardiomyopathy, long-QT syndrome, or other ion channelopathies, Marfan syndrome, or clinically significant arrhythmias; specific knowledge of certain cardiac conditions in family members
Femoral pulses to exclude aortic coarctation
Physical stigmata of Marfan syndrome
Brachial artery blood pressure (sitting position)***
*Judged not to be of neurocardiogenic (vasovagal) origin; of particular concern when occurring during or after physical exertion.
**Refers to heart murmurs judged likely to be organic and unlikely to be innocent; auscultation should be performed with the patient in both the supine and standing positions (or with Valsalva maneuver), specifically to identify murmurs of dynamic left ventricular outflow tract obstruction.
***Preferably taken in both arms.
If cardiac sign/symptom screening is positive or EKG is abnormal, referral to a cardiologist is recommended. The cardiologist may consider ordering a troponin test and an echocardiogram at the time of acute infection. Depending on the patient’s symptoms and their duration, additional testing including a Holter monitor, exercise stress testing, or cardiac magnetic resonance imaging (MRI) may be considered.
If initial cardiac workup is negative, gradual return to physical activity (based on tolerance) may be initiated after 10 days have passed from the date of the positive test result, and a minimum of 1 day of symptom resolution (excluding loss of taste/smell) has occurred off fever-reducing medicine.
Functional status and/or quality of life
Post-COVID-19 Functional Status scale
A tool to measure functional status over time after COVID-19
- Can you live alone without any assistance from another person?(e.g. independently being able to eat, walk, use the toilet and manage routine daily hygiene)
- Are there any duties/activities at home or at work which you are no longer able to perform yourself?
- Do you suffer from symptoms, pain, depression or anxiety?
- Do you need to avoid or reduce duties/ activities or spread these over time?
RAND-36 Online Calculator (clinical version of the SF-36)
The RAND 36-Item Health Survey taps eight health concepts that measures of quality of life.
(Bateman Horne Center Recommendation)
CFIDS Disability Scale
From Dr. Bell who treated people with ME/CFS for many years.
Self reported scale is scored from 0 (very severe, bedridden constantly) – 100 (healthy) Patients may have two scores due to the variability of the illness. One score for good days and one for bad days.
100: Patient has no symptoms at rest, no symptoms with exercise; has normal overall activity; is able to work full-time without difficulty.
90: Patient has no symptoms at rest, has mild symptoms with activity; has a normal overall activity level. The patient is able to work full-time without difficulty.
80: Patient has mild symptoms at rest, symptoms worsened by exertion. Patient has minimal activity restriction noted for exertion activities only; patient is able to work full-time with difficulty in jobs which require exertion.
70: Patient has mild symptoms at rest. Patient clearly notes some daily activity limitation. Overall, the patient functions close
to 90% of expected, except for activities requiring exertion. Ability to work full-time with difficulty.
60: Patient has mild to moderate symptoms at rest, with daily activity limitation clearly noted. Overall functions 70-90%. Patient is unable to work full-time in jobs which require physical labor, but has the ability to work full-time in light activity if hours are flexible.
50: Patient has moderate symptoms at rest, and moderate to severe symptoms with exercise or activity. An overall activity level is 70% of expected. Patient is unable to perform strenuous duties, but can perform light duty, or desk-work 4-5 hours per day, requires rest periods.
40: Patient has moderate symptoms at rest, and moderate to severe symptoms with exercise activity. The patient has an overall activity level of 50-70% of expected. Patient is not confined to house; is unable to perform strenuous duties, but can perform light duty/desk work 3-4 hours/day, but requires rest periods.
30: Patient has moderate to severe symptoms at rest, and severe symptoms with any exercise. Patient has an overall activity level reduced to 50% of expected; is usually confined to house. Patient is unable to perform any strenuous tasks; is able to perform 2-3 hours of desk work per day, but requires rest periods.
20: Patient has moderate to severe symptoms at rest; is unable to perform strenuous activity. Overall, activity levels are 30-50% of expected. Patient is unable to leave house except rarely, is confined to bed most of the day, is unable to concentrate for more than 1 hour/day.
10: Patient has severe symptoms at rest, is bedridden the majority of the time. Patient has no travel outside of house. Patient
has marked cognitive symptoms preventing concentration.
0: Patient has severe symptoms on a continuous basis, is bedridden constantly, and is unable to care for him/her self.
Modified Medical Research Council Dyspnea Scale (mMRC)
Assess degree of baseline functional disability due to dyspnea.
0 – Dyspnea only with strenuous exercise
+1 – Dyspnea when hurrying or walking up a slight hill
+2 – Walks slower than people of the same age because of dyspnea or has to stop for breath when walking at own pace
+3 – Stops for breath after walking 100 yards (91 m) or after a few minutes
+4 – Too dyspneic to leave house or breathless when dressing
10-Minute NASA Lean Test
In office assessment for Dysautonomia, POTS, Orthostatic Hypotension
Download Document >
Measurement of blood pressure and heart rate while resting supine and every minute for 10 min while standing with shoulder-blades on the wall for a relaxed stance.
Neurobehavioral Symptom Inventory (NSI)
Track neurological symptoms over time
Connective Tissue Disease Screening Questionnaire
30 Questions – PDF in link
Screen populations for potential connective tissue disease (CTD).
(ex: Systemic lupus erythematosus, Rheumatoid arthritis, Scleroderma, Polymyositis, etc.)
Download Connective Tissue Disease Screening Questionnaire >
When is Hypermobility a problem?
“Hypermobility spectrum disorders (HSD) are a group of conditions related to joint hypermobility (JH).”
“HSD are diagnosed after other possible conditions have been excluded, such as any of the Ehlers-Danlos syndromes (EDS) including hypermobile EDS (hEDS).”
“HSD, just like hEDS, can have significant effects on our health. Whatever the problems that arise, whatever the diagnosis, it is important that these effects are managed appropriately and that each person is treated as an individual.”
“HSD and hEDS can be equal in severity, but more importantly, both need similar management, validation, and care.“
– The Ehlers Danlos Society
hEDS 2017 Criteria – Criterion 1 – Beighton Score
Assess for hypermobility using the Beighton Score.
Note this only samples only a small number of joints for examination, so it is important to look for hypermobile joints outside this selected group.
hEDS Criteria 2017
hEDS 2017 Criteria – Criterion 2 & 3 – Skin, prolapses, hernias, heart implications
Criterion 1 is the above Beighton Score.
Download hEDS Criteria 2017 >
*Those with HSD may experience as much or more pain than those who meet the 2017 criteria. This criteria was established as a means to identify the hEDS gene.
WHY IS THIS IMPORTANT?
Those with HSD & hEDS have historically experienced Dysautonomia (POTS), Mast Cell Activation Syndrome (MCAS) and Myalgic encephalomyelitis/chronic fatigue syndrome ME/CFS.
Three of the most common Post-Covid conditions.
HSD & hEDS Common Comorbidities >
4. Laboratory testing
Lab recommendation information from the CDC:
Evaluating and Caring for Patients with Post-COVID Conditions: Interim Guidance
- Blood count, electrolytes, and renal function
- Complete blood count with possible iron studies to follow, basic metabolic panel, urinalysis
- Liver function
- Liver function tests or complete metabolic panel
- Inflammatory markers
- C-reactive protein, erythrocyte sedimentation rate, ferritin
- Thyroid function
- TSH and free T4
- Vitamin deficiencies
Specialized diagnostic laboratory testing
Lab recommendation information from the CDC:
Evaluating and Caring for Patients with Post-COVID Conditions: Interim Guidance
* The specialized diagnostic tests should be ordered in the context of suggestive findings on history and physical examination (e.g., testing for rheumatological conditions in patients experiencing arthralgias).
- Rheumatological conditions
- Antinuclear antibody, rheumatoid factor, anti-cyclic citrullinated peptide, anti-cardiolipin, and creatine phosphokinase)
- Coagulation disorders
- D-dimer, fibrinogen
- Myocardial injury
- Differentiate symptoms of cardiac versus pulmonary origin
- B-type natriuretic peptide
When ME/CFS is suspected
Lab recommendations from the US ME/CFS Clinician Coalition:
TESTING RECOMMENDATIONS FOR SUSPECTED ME/CFS
Tests recommended to identify alternative and comorbid diagnoses and
further characterize ME/CFS. Recommendations include a limited set of tests recommended for all people with suspected ME/CFS and additional tests to be ordered based on the patient’s particular presentation.
5. Symptom Management
Many patients report feeling that their symptoms are blown-off or minimized by their doctors.
The medical community should strive to:
– Suggest symptom management
– Follow-up & check in
Symptom management and a comprehensive rehabilitation plan can be initiated simultaneously with laboratory testing for most patients
“Symptom management approaches that have been helpful for similar disorders may also benefit some patients with post-COVID conditions (e.g., activity management (pacing) for post-exertional malaise).”
– Centers for Disease Control and Prevention
Post-Exertional Malaise, or PEM is an abnormal physiological response to physical or cognitive exertion.
PEM is a key symptom of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) and like other neurological diseases, up to 80% of cases of ME/CFS are initiated by infection.
Estimates are showing that ~50% of Covid Long Haulers will meet the criteria for ME/CFS.
PEM can be triggered after daily activities: a shower, a phone call, or a walk around the block. Everyones threshold is different and can vary.
The PEM “crash” can feel like the flu, an increase in neurological symptoms, gastrointestinal symptoms, headaches, sensory sensitivity, or crushing fatigue.
PEM symptoms are usually delayed. Onset is a worsening symptoms, usually delayed by hours or days.
*** CAUTION ***
Patients with PEM, ~90% of Covid Long Haulers, are at risk for a worsening of their condition due to “pushing through” symptoms or going beyond their personal limits. The crash can persist for hours, days, weeks, or permanently. Patients should be informed of the risks and made aware of the importance of pacing and understanding their own energy envelopes.
“More than 3 decades of trying exercise in this population can be summed up in one sentence: exercise can be harmful, sometimes life threatening, and should be avoided.”
– Journal of Orthopaedic & Sports Physical Therapy
The Bateman Horne Center:
“The key to managing ME/CFS lies in the ability to recognize and understand physical and cognitive limitations, and teaching patients how to ‘pace’ all activity to prevent severe or prolonged PEM.
An important role for the medical provider is to teach patients about PEM and how to manage through pacing. Pacing is an individualized approach to managing physical, cognitive, and emotional energy within a patient’s specific limits by carefully planning where and how to spend their available energy. Pacing is a critical tool to prevent and/or reduce PEM.
- Ideally, the patient should only engage in the amount of activity that doesn’t induce PEM in 24-48 hours. The goal is to get back to “baseline” the following morning. If PEM is induced, rest is required until it resolves.
- Help the patient develop a heightened sense of awareness about the threshold of relapse and the consequences of moving beyond their envelope.
- Activity logs, heart rate monitors, smart watches, and the Oura Ring are all helpful tools to give immediate/daily/weekly/monthly feedback on activity and pacing.”
Orthostatic Intolerance & Dysautonomia
What is it?
Orthostatic intolerance refers to the inability to maintain an upright posture. Patients may experience a light-headedness, dizziness, nausea, leg pain, and breathlessness.
Dysautonomia is an umbrella term that describes several different conditions that cause a dysfunctioning of the Autonomic Nervous System which controls the “automatic” functions of the body:
- Heart rate
- Blood pressure
- Dilation and constriction of the pupils of the eye
- Kidney function
- Temperature control
Common forms of Dysutonomia diagnosed after COVID infection are Postural Orthostatic Tachycardia Syndrome (POTS) & Orthostatic Hypotension (sometimes referred to as Neurally Mediated Hypotension or NMH.)
Commonly seen in Long COVID
Orthostatic Intolerance and Dysautonomia is a common complication of Long COVID, with a recent study suggesting that 67% of Long COVID patients experience autonomic nervous system dysfunction, despite the severity of their acute COVID-19 infection.
Management techniques that are commonly suggested for Dysautonomia have been largely adopted by the Long Covid community.
- Compression gear
- Electrolyte drinks
- Heat avoidance
- Shower chairs
- Mobility aids
- Heart rate monitors
- Blood pressure monitors
- Avoid standing for long periods
Our Dysautonomia Research & Resource Collection >
6. Long Covid can be Disabling
Long Covid can be a disability under the ADA, Section 504, and Section 1557 if it substantially limits one or more major life activities.
Major bodily function, such as the functions of the immune system, cardiovascular system, neurological system, circulatory system, or the operation of an organ can occur.
Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557
The average person with ME/CFS scores as more disabled on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and cancer.
What is Long Covid?
Long Covid is a name given to the post-covid conditions developed after acute Covid-19 infection.
Pediatric Long Covid
It can be extremely challenging to identify when a child is struggling to fully recover after fighting an infection with Covid-19 because of fluctuating symptoms that are often difficult to describe.
Symptoms often fluctuate from day-to-day, week-to-week, and month-to-month. Severity from person-to-person can also be different. Some people improve, some stay the same, and some people decline.
Connect with Us
Join our groups for support.
You can find us on Facebook at Long Covid Families or message us about an upcoming event. If you are an organization that would like to learn more about Long Covid or post-viral syndromes and how to support children and families, please email us at firstname.lastname@example.org.