Resources for Long COVID Researchers


We are open to collaborations, particularly for those able to co-write grants and those with access to lab and imaging resources. Please see our guidelines for collaborating.

Research Priorities

The Patient-Led Research Collaborative has put out Recommendations for the National Research Action Plan on Long COVID.

We have also put out a list of Recommended Researchers: experts in Long Covid and post-viral illnesses who we recommend to work with for research collaborations, panels, and grant funding.

Patient-Led Research Scorecards

The Council of Medical Specialty Societies (CMSS) and Patient-Led Research Collaborative have developed a sustainable collaborative model of CER based on information from and the expertise of patient communities, researchers, funders, and clinical research organizations. This model takes the form of scorecards which serve to evaluate how effective a patient group and research partner collaboration will be at conducting truly patient-led research.

Long COVID survey questions

Our survey is available here for research use (with citation). Additional languages (French, Spanish, Arabic, Portuguese, Russian, Indonesian, Dutch, Italian) are available – please contact us. The survey include the below symptom list, as well as questions about symptom timecourses (over 7 months), triggers and relapses, impact on work, and many others. If you use our survey, or learn from it, please consider making a donation.

Long Covid Symptom List

If you are researching Long Covid, we recommend asking about the symptoms below (ordered by frequency, n=3,762). These numbers corresponds to our December 2020 paper “Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact.” We also suggest adding symptoms on spine and neck pain.

2Sensorimotor symptoms, overall91.4Neuropsychiatric – Sensorimotor
3Post-Exertional Malaise89.1Systemic
4Cognitive Dysfunction symptoms, overall85.4Neuropsychiatric – Cognitive Dysfunction
5Brain fog85.1Neuropsychiatric – Cognitive Dysfunction
6Sleep symptoms, overall78.6Neuropsychiatric – Sleep
7Shortness of Breath77.4Pumonary
8Headaches, overall76.7Neuropsychiatric – Headaches
9Poor attention or concentration74.8Neuropsychiatric – Cognitive Dysfunction
10Tightness of Chest74.8Musculoskeletal
11Memory symptoms, overall72.8Neuropsychiatric – Memory
12Muscle aches69.1Musculoskeletal
13Insomnia68.6Neuropsychiatric – Sleep
14Heart palpitations67.4Cardiovascular
15Dizziness / vertigo / unsteadiness or balance issues67.3Neuropsychiatric – Sensorimotor
16Dry cough66.2Pumonary
17Difficulty thinking65Neuropsychiatric – Cognitive Dysfunction
18Short-term memory loss (memory that lasts ~30 seconds, i.e. remembering a phone number before writing it down, or forgetting you’re in the middle of a task)64.8Neuropsychiatric – Memory
20Episodes of breathing difficulty/gasping for air with normal oxygen saturation60.4Pumonary
22Sore Throat59.5HEENT (Head, Ear, Eyes, Nose, Throat)
23Elevated temperature (98.8-100.4 F)58.2Systemic
24Anxiety57.9Neuropsychiatric – Emotion and Mood
25Smell and Taste symptoms, overall57.6Neuropsychiatric – Taste and Smell
26Difficulty with executive functioning (planning, organizing, figuring out the sequence of actions, abstracting)57.6Neuropsychiatric – Cognitive Dysfunction
28Difficulty problem-solving or decision-making54.1Neuropsychiatric – Cognitive Dysfunction
29Pain/burning in chest53.1Cardiovascular
30Joint pain52.2Musculoskeletal
31Loss of Appetite51.6Gastrointestinal
32Irritability51.1Neuropsychiatric – Emotion and Mood
33Tingling/prickling/pins and needles sensation49.2Neuropsychiatric – Sensorimotor
34Speech and Language symptoms, overall48.6Neuropsychiatric – Speech and Language
36Waking up several times during the night47.6Neuropsychiatric – Sleep
37Depression47.3Neuropsychiatric – Emotion and Mood
38Skin sensations: burning, tingling, or itchiness without rash46.9Systemic
39All Reproductive46.4Reproductive/Endocrine/Genitourinary
40Mood Lability46.3Neuropsychiatric – Emotion and Mood
41Difficulty finding the right words while speaking/writing46.3Neuropsychiatric – Speech and Language
43Tearfulness42.5Neuropsychiatric – Emotion and Mood
44Slowed thoughts41.8Neuropsychiatric – Cognitive Dysfunction
45Temperature lability40.9Systemic
46Night sweats40.8Systemic
47Tremors40.2Neuropsychiatric – Sensorimotor
48Headaches, behind the eyes40.1Neuropsychiatric – Headaches
49Abdominal pain39.7Gastrointestinal
50Difficulty falling asleep39.6Neuropsychiatric – Sleep
51Apathy (lack of feeling, emotion, interest, or concern)39.2Neuropsychiatric – Emotion and Mood
52Stiff neck39.1Musculoskeletal
53Long-term memory loss (long-term memory can be anything from remembering yesterday, forgetting you’ve done a task, forgetting recently learned information, or forgetting your third-grade experience)36.1Neuropsychiatric – Memory
54All menstrual/period issues – with menstrual cycles36.1Reproductive/Endocrine/Genitourinary
55Awakened by feeling like you couldn’t breathe36Neuropsychiatric – Sleep
56Loss of smell35.9Neuropsychiatric – Taste and Smell
57Extreme thirst35.8Reproductive/Endocrine/Genitourinary
58Blurred vision35.7HEENT (Head, Ear, Eyes, Nose, Throat)
59Numbness/loss of sensation35.4Neuropsychiatric – Sensorimotor
60Headaches, diffuse (entire brain)35.1Neuropsychiatric – Headaches
61Lower Esophagus Burning / gastroesophageal reflux / acid reflux35Gastrointestinal
62Sensitivity to noise34.7Neuropsychiatric – Sensorimotor
63Tinnitus34Neuropsychiatric – Sensorimotor
64Headaches, in the temples33.9Neuropsychiatric – Headaches
65Vision symptoms, overall33.7HEENT (Head, Ear, Eyes, Nose, Throat)
66Sense of doom33.7Neuropsychiatric – Emotion and Mood
67Loss of taste33.7Neuropsychiatric – Taste and Smell
69Vivid dreams32.9Neuropsychiatric – Sleep
70Sensation of brain pressure32.6Neuropsychiatric – Sensorimotor
71Lump in throat/difficulty swallowing32.5HEENT (Head, Ear, Eyes, Nose, Throat)
72Muscle spasms32.5Musculoskeletal
73Neuralgia (nerve pain)31.3Neuropsychiatric – Sensorimotor
74Itchy skin31.2Dermatologic
75Sensitivity to light30.8HEENT (Head, Ear, Eyes, Nose, Throat)
76Feeling full quickly when eating30.8Gastrointestinal
77Fever (>100.4 F)30.8Systemic
78Runny nose29.3HEENT (Head, Ear, Eyes, Nose, Throat)
79Difficulty communicating verbally29.2Neuropsychiatric – Speech and Language
80Vibrating sensations28.9Neuropsychiatric – Sensorimotor
81Changes to non-primary (second/third) language skills*28.9Neuropsychiatric – Speech and Language
82Dry eyes28.6HEENT (Head, Ear, Eyes, Nose, Throat)
83Cough with mucus production28.2Pumonary
84Skin rashes27.8Dermatologic
85Heat intolerance27.2Systemic
86Changes in the voice26.9HEENT (Head, Ear, Eyes, Nose, Throat)
87Headaches, at the base of the skull26.9Neuropsychiatric – Headaches
88Feeling like the world isn’t real (derealization) or Feeling like you aren’t real/like you’re observing yourself from outside your body (depersonalization)26.6Neuropsychiatric – Emotion and Mood
89Low oxygen levels (<94%)*26.5Pumonary
90Abnormally irregular periods26.5Reproductive/Endocrine/Genitourinary
91Eye pressure or pain26.4HEENT (Head, Ear, Eyes, Nose, Throat)
92Sneezing26.3HEENT (Head, Ear, Eyes, Nose, Throat)
93Ear pain25.8HEENT (Head, Ear, Eyes, Nose, Throat)
94Nightmares25.7Neuropsychiatric – Sleep
95Electrical zaps/electrical shock sensation25.1Neuropsychiatric – Sensorimotor
96Altered sense of taste25.1Neuropsychiatric – Taste and Smell
97Waking up early in the morning24.9Neuropsychiatric – Sleep
98Difficulty reading/processing written text24.8Neuropsychiatric – Speech and Language
100Anger24.2Neuropsychiatric – Emotion and Mood
101Bone ache or burning24.2Musculoskeletal
102Itchy eyes24.2HEENT (Head, Ear, Eyes, Nose, Throat)
103Hyperactive bowel sensations24Gastrointestinal
104Headaches/pain after mental exertion23.8Neuropsychiatric – Headaches
105Difficulty processing/understanding what others say23.8Neuropsychiatric – Speech and Language
106Migraines23.2Neuropsychiatric – Headaches
107Phantom smells (imagining/hallucinating smells – smelling things that aren’t there)23.2Neuropsychiatric – Taste and Smell
108Difficulting speaking in complete sentences22.2Neuropsychiatric – Speech and Language
109Changes to the ear canal (such as pressure, blockage, burning, swelling)21.9HEENT (Head, Ear, Eyes, Nose, Throat)
110Low temperature20.6Systemic
111Changes in sensitivity to medication20.3Immunologic/Autoimmune
112Abnormally high blood pressure20.1Cardiovascular
113Floaters20.1HEENT (Head, Ear, Eyes, Nose, Throat)
114Abnormally heavy periods/clotting19.8Reproductive/Endocrine/Genitourinary
115Altered sense of smell19.8Neuropsychiatric – Taste and Smell
116Visibly inflamed/bulging veins19.3Dermatologic
117Other menstrual issues18.8Reproductive/Endocrine/Genitourinary
118Acute (sudden) confusion/disorientation18.4Neuropsychiatric – Cognitive Dysfunction
119Petechiae (tiny purple, red, or brown spots on the skin, usually on arms, legs, stomach, buttocks, and occasionally inside mouth or on eyelids)17.8Dermatologic
120Restless leg syndrome17.8Neuropsychiatric – Sleep
121Bradycardia (low heart rate, <60 beats per minute)17.5Cardiovascular
122Rattling of breath17Pumonary
123Difficulty communicating in writing16.4Neuropsychiatric – Speech and Language
124Other Sleeping Issues Symptoms16.2Neuropsychiatric – Sleep
125Sexual dysfunction (nonbinary)15.9Reproductive/Endocrine/Genitourinary
126Slurring words/speech15.8Neuropsychiatric – Speech and Language
127Other temperature problems15.6Systemic
128Hallucinations, overall15.4Neuropsychiatric – Hallucinations
129Bloodshot eyes15.4HEENT (Head, Ear, Eyes, Nose, Throat)
130Lucid dreams (dreams where you are aware you are dreaming or have some control over what you dream about)15.4Neuropsychiatric – Sleep
131Thoughts moving too quickly15.2Neuropsychiatric – Cognitive Dysfunction
132Urinary issues, other15Reproductive/Endocrine/Genitourinary
133Pink eye (conjunctivitis)14.9HEENT (Head, Ear, Eyes, Nose, Throat)
134Sexual dysfunction (cis men)14.6Reproductive/Endocrine/Genitourinary
136Bladder control issues14.1Reproductive/Endocrine/Genitourinary
137Other Memory Symptoms13.5Neuropsychiatric – Memory
138Seeing things in your peripheral vision13.3HEENT (Head, Ear, Eyes, Nose, Throat)
139COVID toes (discoloration, swelling, painful, or blistering toes)13Dermatologic
140Peeling skin13Dermatologic
141Headaches, other13Neuropsychiatric – Headaches
143Numbness/weakness on one side of the body only12.6Neuropsychiatric – Sensorimotor
144Other ear/hearing issues12.4HEENT (Head, Ear, Eyes, Nose, Throat)
145Other eye issues12.4HEENT (Head, Ear, Eyes, Nose, Throat)
146Sensation of brain warmth/”on fire”12.3Neuropsychiatric – Sensorimotor
147Heightened reaction to old allergies12.1Immunologic/Autoimmune
148Forgetting how to do routine tasks (tying your shoe laces, washing your hands)12Neuropsychiatric – Memory
149Impulsivity and Disinhibition12Neuropsychiatric – Emotion and Mood
150Abnormally low blood pressure11.8Cardiovascular
151Suicidality11.6Neuropsychiatric – Emotion and Mood
152Pain in testicles (cis men)10.9Reproductive/Endocrine/Genitourinary
153Visual (seeing) Hallucinations10.4Neuropsychiatric – Hallucinations
154Other skin and allergy symptoms10.2Immunologic/Autoimmune
156Brittle/discolored nail9.5Dermatologic
157New allergies (food, chemical, environmental, etc)9.3Immunologic/Autoimmune
158Agnosia (failure to recognize or identify objects despite intact sensory functioning)9.2Neuropsychiatric – Cognitive Dysfunction
159Phantom taste (imagining/hallucinating tastes – tasting things when there’s nothing in your mouth)9Neuropsychiatric – Taste and Smell
160Speaking unrecognizable words8.9Neuropsychiatric – Speech and Language
161Hearing loss8.7HEENT (Head, Ear, Eyes, Nose, Throat)
162Other Cognitive Functioning Symptoms8.6Neuropsychiatric – Cognitive Dysfunction
163Heightened sense of smell8.6Neuropsychiatric – Taste and Smell
164New allergies (food, chemical, environmental, etc) (weeks/months)8.5Immunologic/Autoimmune
165Redness on the outside of eyes8.4HEENT (Head, Ear, Eyes, Nose, Throat)
166Sensation of facial pressure/numbness, left side8.2HEENT (Head, Ear, Eyes, Nose, Throat)
167Sexual dysfunction (cis women)8Reproductive/Endocrine/Genitourinary
168Dermatographia (writing on your skin causes red lines where you scratched)7.7Immunologic/Autoimmune
169Aggression7.4Neuropsychiatric – Emotion and Mood
170Inability to make new memories7.3Neuropsychiatric – Memory
171Sleep apnea7.1Neuropsychiatric – Sleep
172Double vision6.9HEENT (Head, Ear, Eyes, Nose, Throat)
173Sensation of facial pressure/numbness, right side6.8HEENT (Head, Ear, Eyes, Nose, Throat)
174Inability to yawn6.7Neuropsychiatric – Sensorimotor
175Auditory (hearing) Hallucinations6.5Neuropsychiatric – Hallucinations
176Other Speech/Language Symptoms6.2Neuropsychiatric – Speech and Language
177Other Emotional Changes Symptoms6.1Neuropsychiatric – Emotion and Mood
178Sensation of facial pressure/numbness, other area6.1HEENT (Head, Ear, Eyes, Nose, Throat)
179Coughing up Blood5.2Pumonary
180Itchy, other5.1Dermatologic
181Euphoria (a feeling or state of intense excitement and happiness)5Neuropsychiatric – Emotion and Mood
182Other semen/penis/testicles issues (cis men)4.9Reproductive/Endocrine/Genitourinary
183Inability to cry4.9Neuropsychiatric – Sensorimotor
184Numbness/loss of sensation in/near the ear4.7HEENT (Head, Ear, Eyes, Nose, Throat)
185All menstrual/period issues – post-menopausal and no/other menstrual cycles4.5Reproductive/Endocrine/Genitourinary
186Post-Menopausal bleeding/spotting (cis women over 49)4.5Reproductive/Endocrine/Genitourinary
187High blood sugar (if measured)4.4Reproductive/Endocrine/Genitourinary
188New/unexpected anaphylaxis reaction4.1Immunologic/Autoimmune
189Blood clots (Thrombosis)3.5Cardiovascular
190Hypomania (a milder form of mania)3.4Neuropsychiatric – Emotion and Mood
191Facial paralysis3.4HEENT (Head, Ear, Eyes, Nose, Throat)
192Tunnel vision3.3HEENT (Head, Ear, Eyes, Nose, Throat)
193Decrease in size of testicles/penis (cis men)3.2Reproductive/Endocrine/Genitourinary
194Pain in testicles (nonbinary)3.2Reproductive/Endocrine/Genitourinary
195Tactile (touch) Hallucinations3.1Neuropsychiatric – Hallucinations
196Early Menopause (cis women in 40s)3Reproductive/Endocrine/Genitourinary
197Delusions3Neuropsychiatric – Emotion and Mood
199Seizures (suspected)2.7Neuropsychiatric – Sensorimotor
200Heightened sense of taste2.7Neuropsychiatric – Taste and Smell
201Mania (abnormally elevated/excited mood, decreased need for sleep, occasionally with delusions)2.6Neuropsychiatric – Emotion and Mood
202Hallucinations, other2.3Neuropsychiatric – Hallucinations
203Low blood sugar (if measured)1.7Reproductive/Endocrine/Genitourinary
204Decrease in size of testicles/penis (nonbinary)1.6Reproductive/Endocrine/Genitourinary
205Other semen/penis/testicles issues (nonbinary)1.6Reproductive/Endocrine/Genitourinary
206Post-Menopausal bleeding/spotting (cis women in 40s)1.3Reproductive/Endocrine/Genitourinary
207Total loss of vision1HEENT (Head, Ear, Eyes, Nose, Throat)
208Seizures (confirmed)0.6Neuropsychiatric – Sensorimotor
209Early Menopause (cis women under 40)0.3Reproductive/Endocrine/Genitourinary
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