Collaborations
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.
| # | SYMPTOM | % | CATEGORY |
| 1 | Fatigue | 98.3 | Systemic |
| 2 | Sensorimotor symptoms, overall | 91.4 | Neuropsychiatric – Sensorimotor |
| 3 | Post-Exertional Malaise | 89.1 | Systemic |
| 4 | Cognitive Dysfunction symptoms, overall | 85.4 | Neuropsychiatric – Cognitive Dysfunction |
| 5 | Brain fog | 85.1 | Neuropsychiatric – Cognitive Dysfunction |
| 6 | Sleep symptoms, overall | 78.6 | Neuropsychiatric – Sleep |
| 7 | Shortness of Breath | 77.4 | Pumonary |
| 8 | Headaches, overall | 76.7 | Neuropsychiatric – Headaches |
| 9 | Poor attention or concentration | 74.8 | Neuropsychiatric – Cognitive Dysfunction |
| 10 | Tightness of Chest | 74.8 | Musculoskeletal |
| 11 | Memory symptoms, overall | 72.8 | Neuropsychiatric – Memory |
| 12 | Muscle aches | 69.1 | Musculoskeletal |
| 13 | Insomnia | 68.6 | Neuropsychiatric – Sleep |
| 14 | Heart palpitations | 67.4 | Cardiovascular |
| 15 | Dizziness / vertigo / unsteadiness or balance issues | 67.3 | Neuropsychiatric – Sensorimotor |
| 16 | Dry cough | 66.2 | Pumonary |
| 17 | Difficulty thinking | 65 | Neuropsychiatric – Cognitive Dysfunction |
| 18 | Short-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) | 64.8 | Neuropsychiatric – Memory |
| 19 | Tachycardia | 61.4 | Cardiovascular |
| 20 | Episodes of breathing difficulty/gasping for air with normal oxygen saturation | 60.4 | Pumonary |
| 21 | Diarrhea | 59.7 | Gastrointestinal |
| 22 | Sore Throat | 59.5 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 23 | Elevated temperature (98.8-100.4 F) | 58.2 | Systemic |
| 24 | Anxiety | 57.9 | Neuropsychiatric – Emotion and Mood |
| 25 | Smell and Taste symptoms, overall | 57.6 | Neuropsychiatric – Taste and Smell |
| 26 | Difficulty with executive functioning (planning, organizing, figuring out the sequence of actions, abstracting) | 57.6 | Neuropsychiatric – Cognitive Dysfunction |
| 27 | Chills/flushing/sweats | 56.5 | Systemic |
| 28 | Difficulty problem-solving or decision-making | 54.1 | Neuropsychiatric – Cognitive Dysfunction |
| 29 | Pain/burning in chest | 53.1 | Cardiovascular |
| 30 | Joint pain | 52.2 | Musculoskeletal |
| 31 | Loss of Appetite | 51.6 | Gastrointestinal |
| 32 | Irritability | 51.1 | Neuropsychiatric – Emotion and Mood |
| 33 | Tingling/prickling/pins and needles sensation | 49.2 | Neuropsychiatric – Sensorimotor |
| 34 | Speech and Language symptoms, overall | 48.6 | Neuropsychiatric – Speech and Language |
| 35 | Nausea | 47.8 | Gastrointestinal |
| 36 | Waking up several times during the night | 47.6 | Neuropsychiatric – Sleep |
| 37 | Depression | 47.3 | Neuropsychiatric – Emotion and Mood |
| 38 | Skin sensations: burning, tingling, or itchiness without rash | 46.9 | Systemic |
| 39 | All Reproductive | 46.4 | Reproductive/Endocrine/Genitourinary |
| 40 | Mood Lability | 46.3 | Neuropsychiatric – Emotion and Mood |
| 41 | Difficulty finding the right words while speaking/writing | 46.3 | Neuropsychiatric – Speech and Language |
| 42 | Weakness | 44.5 | Systemic |
| 43 | Tearfulness | 42.5 | Neuropsychiatric – Emotion and Mood |
| 44 | Slowed thoughts | 41.8 | Neuropsychiatric – Cognitive Dysfunction |
| 45 | Temperature lability | 40.9 | Systemic |
| 46 | Night sweats | 40.8 | Systemic |
| 47 | Tremors | 40.2 | Neuropsychiatric – Sensorimotor |
| 48 | Headaches, behind the eyes | 40.1 | Neuropsychiatric – Headaches |
| 49 | Abdominal pain | 39.7 | Gastrointestinal |
| 50 | Difficulty falling asleep | 39.6 | Neuropsychiatric – Sleep |
| 51 | Apathy (lack of feeling, emotion, interest, or concern) | 39.2 | Neuropsychiatric – Emotion and Mood |
| 52 | Stiff neck | 39.1 | Musculoskeletal |
| 53 | Long-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) | 36.1 | Neuropsychiatric – Memory |
| 54 | All menstrual/period issues – with menstrual cycles | 36.1 | Reproductive/Endocrine/Genitourinary |
| 55 | Awakened by feeling like you couldn’t breathe | 36 | Neuropsychiatric – Sleep |
| 56 | Loss of smell | 35.9 | Neuropsychiatric – Taste and Smell |
| 57 | Extreme thirst | 35.8 | Reproductive/Endocrine/Genitourinary |
| 58 | Blurred vision | 35.7 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 59 | Numbness/loss of sensation | 35.4 | Neuropsychiatric – Sensorimotor |
| 60 | Headaches, diffuse (entire brain) | 35.1 | Neuropsychiatric – Headaches |
| 61 | Lower Esophagus Burning / gastroesophageal reflux / acid reflux | 35 | Gastrointestinal |
| 62 | Sensitivity to noise | 34.7 | Neuropsychiatric – Sensorimotor |
| 63 | Tinnitus | 34 | Neuropsychiatric – Sensorimotor |
| 64 | Headaches, in the temples | 33.9 | Neuropsychiatric – Headaches |
| 65 | Vision symptoms, overall | 33.7 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 66 | Sense of doom | 33.7 | Neuropsychiatric – Emotion and Mood |
| 67 | Loss of taste | 33.7 | Neuropsychiatric – Taste and Smell |
| 68 | Coldness | 33.5 | Systemic |
| 69 | Vivid dreams | 32.9 | Neuropsychiatric – Sleep |
| 70 | Sensation of brain pressure | 32.6 | Neuropsychiatric – Sensorimotor |
| 71 | Lump in throat/difficulty swallowing | 32.5 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 72 | Muscle spasms | 32.5 | Musculoskeletal |
| 73 | Neuralgia (nerve pain) | 31.3 | Neuropsychiatric – Sensorimotor |
| 74 | Itchy skin | 31.2 | Dermatologic |
| 75 | Sensitivity to light | 30.8 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 76 | Feeling full quickly when eating | 30.8 | Gastrointestinal |
| 77 | Fever (>100.4 F) | 30.8 | Systemic |
| 78 | Runny nose | 29.3 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 79 | Difficulty communicating verbally | 29.2 | Neuropsychiatric – Speech and Language |
| 80 | Vibrating sensations | 28.9 | Neuropsychiatric – Sensorimotor |
| 81 | Changes to non-primary (second/third) language skills* | 28.9 | Neuropsychiatric – Speech and Language |
| 82 | Dry eyes | 28.6 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 83 | Cough with mucus production | 28.2 | Pumonary |
| 84 | Skin rashes | 27.8 | Dermatologic |
| 85 | Heat intolerance | 27.2 | Systemic |
| 86 | Changes in the voice | 26.9 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 87 | Headaches, at the base of the skull | 26.9 | Neuropsychiatric – Headaches |
| 88 | Feeling like the world isn’t real (derealization) or Feeling like you aren’t real/like you’re observing yourself from outside your body (depersonalization) | 26.6 | Neuropsychiatric – Emotion and Mood |
| 89 | Low oxygen levels (<94%)* | 26.5 | Pumonary |
| 90 | Abnormally irregular periods | 26.5 | Reproductive/Endocrine/Genitourinary |
| 91 | Eye pressure or pain | 26.4 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 92 | Sneezing | 26.3 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 93 | Ear pain | 25.8 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 94 | Nightmares | 25.7 | Neuropsychiatric – Sleep |
| 95 | Electrical zaps/electrical shock sensation | 25.1 | Neuropsychiatric – Sensorimotor |
| 96 | Altered sense of taste | 25.1 | Neuropsychiatric – Taste and Smell |
| 97 | Waking up early in the morning | 24.9 | Neuropsychiatric – Sleep |
| 98 | Difficulty reading/processing written text | 24.8 | Neuropsychiatric – Speech and Language |
| 99 | Constipation | 24.7 | Gastrointestinal |
| 100 | Anger | 24.2 | Neuropsychiatric – Emotion and Mood |
| 101 | Bone ache or burning | 24.2 | Musculoskeletal |
| 102 | Itchy eyes | 24.2 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 103 | Hyperactive bowel sensations | 24 | Gastrointestinal |
| 104 | Headaches/pain after mental exertion | 23.8 | Neuropsychiatric – Headaches |
| 105 | Difficulty processing/understanding what others say | 23.8 | Neuropsychiatric – Speech and Language |
| 106 | Migraines | 23.2 | Neuropsychiatric – Headaches |
| 107 | Phantom smells (imagining/hallucinating smells – smelling things that aren’t there) | 23.2 | Neuropsychiatric – Taste and Smell |
| 108 | Difficulting speaking in complete sentences | 22.2 | Neuropsychiatric – Speech and Language |
| 109 | Changes to the ear canal (such as pressure, blockage, burning, swelling) | 21.9 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 110 | Low temperature | 20.6 | Systemic |
| 111 | Changes in sensitivity to medication | 20.3 | Immunologic/Autoimmune |
| 112 | Abnormally high blood pressure | 20.1 | Cardiovascular |
| 113 | Floaters | 20.1 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 114 | Abnormally heavy periods/clotting | 19.8 | Reproductive/Endocrine/Genitourinary |
| 115 | Altered sense of smell | 19.8 | Neuropsychiatric – Taste and Smell |
| 116 | Visibly inflamed/bulging veins | 19.3 | Dermatologic |
| 117 | Other menstrual issues | 18.8 | Reproductive/Endocrine/Genitourinary |
| 118 | Acute (sudden) confusion/disorientation | 18.4 | Neuropsychiatric – Cognitive Dysfunction |
| 119 | Petechiae (tiny purple, red, or brown spots on the skin, usually on arms, legs, stomach, buttocks, and occasionally inside mouth or on eyelids) | 17.8 | Dermatologic |
| 120 | Restless leg syndrome | 17.8 | Neuropsychiatric – Sleep |
| 121 | Bradycardia (low heart rate, <60 beats per minute) | 17.5 | Cardiovascular |
| 122 | Rattling of breath | 17 | Pumonary |
| 123 | Difficulty communicating in writing | 16.4 | Neuropsychiatric – Speech and Language |
| 124 | Other Sleeping Issues Symptoms | 16.2 | Neuropsychiatric – Sleep |
| 125 | Sexual dysfunction (nonbinary) | 15.9 | Reproductive/Endocrine/Genitourinary |
| 126 | Slurring words/speech | 15.8 | Neuropsychiatric – Speech and Language |
| 127 | Other temperature problems | 15.6 | Systemic |
| 128 | Hallucinations, overall | 15.4 | Neuropsychiatric – Hallucinations |
| 129 | Bloodshot eyes | 15.4 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 130 | Lucid dreams (dreams where you are aware you are dreaming or have some control over what you dream about) | 15.4 | Neuropsychiatric – Sleep |
| 131 | Thoughts moving too quickly | 15.2 | Neuropsychiatric – Cognitive Dysfunction |
| 132 | Urinary issues, other | 15 | Reproductive/Endocrine/Genitourinary |
| 133 | Pink eye (conjunctivitis) | 14.9 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 134 | Sexual dysfunction (cis men) | 14.6 | Reproductive/Endocrine/Genitourinary |
| 135 | Vomiting | 14.3 | Gastrointestinal |
| 136 | Bladder control issues | 14.1 | Reproductive/Endocrine/Genitourinary |
| 137 | Other Memory Symptoms | 13.5 | Neuropsychiatric – Memory |
| 138 | Seeing things in your peripheral vision | 13.3 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 139 | COVID toes (discoloration, swelling, painful, or blistering toes) | 13 | Dermatologic |
| 140 | Peeling skin | 13 | Dermatologic |
| 141 | Headaches, other | 13 | Neuropsychiatric – Headaches |
| 142 | Fainting | 12.9 | Cardiovascular |
| 143 | Numbness/weakness on one side of the body only | 12.6 | Neuropsychiatric – Sensorimotor |
| 144 | Other ear/hearing issues | 12.4 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 145 | Other eye issues | 12.4 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 146 | Sensation of brain warmth/”on fire” | 12.3 | Neuropsychiatric – Sensorimotor |
| 147 | Heightened reaction to old allergies | 12.1 | Immunologic/Autoimmune |
| 148 | Forgetting how to do routine tasks (tying your shoe laces, washing your hands) | 12 | Neuropsychiatric – Memory |
| 149 | Impulsivity and Disinhibition | 12 | Neuropsychiatric – Emotion and Mood |
| 150 | Abnormally low blood pressure | 11.8 | Cardiovascular |
| 151 | Suicidality | 11.6 | Neuropsychiatric – Emotion and Mood |
| 152 | Pain in testicles (cis men) | 10.9 | Reproductive/Endocrine/Genitourinary |
| 153 | Visual (seeing) Hallucinations | 10.4 | Neuropsychiatric – Hallucinations |
| 154 | Other skin and allergy symptoms | 10.2 | Immunologic/Autoimmune |
| 155 | Other | 9.5 | Pumonary |
| 156 | Brittle/discolored nail | 9.5 | Dermatologic |
| 157 | New allergies (food, chemical, environmental, etc) | 9.3 | Immunologic/Autoimmune |
| 158 | Agnosia (failure to recognize or identify objects despite intact sensory functioning) | 9.2 | Neuropsychiatric – Cognitive Dysfunction |
| 159 | Phantom taste (imagining/hallucinating tastes – tasting things when there’s nothing in your mouth) | 9 | Neuropsychiatric – Taste and Smell |
| 160 | Speaking unrecognizable words | 8.9 | Neuropsychiatric – Speech and Language |
| 161 | Hearing loss | 8.7 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 162 | Other Cognitive Functioning Symptoms | 8.6 | Neuropsychiatric – Cognitive Dysfunction |
| 163 | Heightened sense of smell | 8.6 | Neuropsychiatric – Taste and Smell |
| 164 | New allergies (food, chemical, environmental, etc) (weeks/months) | 8.5 | Immunologic/Autoimmune |
| 165 | Redness on the outside of eyes | 8.4 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 166 | Sensation of facial pressure/numbness, left side | 8.2 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 167 | Sexual dysfunction (cis women) | 8 | Reproductive/Endocrine/Genitourinary |
| 168 | Dermatographia (writing on your skin causes red lines where you scratched) | 7.7 | Immunologic/Autoimmune |
| 169 | Aggression | 7.4 | Neuropsychiatric – Emotion and Mood |
| 170 | Inability to make new memories | 7.3 | Neuropsychiatric – Memory |
| 171 | Sleep apnea | 7.1 | Neuropsychiatric – Sleep |
| 172 | Double vision | 6.9 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 173 | Sensation of facial pressure/numbness, right side | 6.8 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 174 | Inability to yawn | 6.7 | Neuropsychiatric – Sensorimotor |
| 175 | Auditory (hearing) Hallucinations | 6.5 | Neuropsychiatric – Hallucinations |
| 176 | Other Speech/Language Symptoms | 6.2 | Neuropsychiatric – Speech and Language |
| 177 | Other Emotional Changes Symptoms | 6.1 | Neuropsychiatric – Emotion and Mood |
| 178 | Sensation of facial pressure/numbness, other area | 6.1 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 179 | Coughing up Blood | 5.2 | Pumonary |
| 180 | Itchy, other | 5.1 | Dermatologic |
| 181 | Euphoria (a feeling or state of intense excitement and happiness) | 5 | Neuropsychiatric – Emotion and Mood |
| 182 | Other semen/penis/testicles issues (cis men) | 4.9 | Reproductive/Endocrine/Genitourinary |
| 183 | Inability to cry | 4.9 | Neuropsychiatric – Sensorimotor |
| 184 | Numbness/loss of sensation in/near the ear | 4.7 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 185 | All menstrual/period issues – post-menopausal and no/other menstrual cycles | 4.5 | Reproductive/Endocrine/Genitourinary |
| 186 | Post-Menopausal bleeding/spotting (cis women over 49) | 4.5 | Reproductive/Endocrine/Genitourinary |
| 187 | High blood sugar (if measured) | 4.4 | Reproductive/Endocrine/Genitourinary |
| 188 | New/unexpected anaphylaxis reaction | 4.1 | Immunologic/Autoimmune |
| 189 | Blood clots (Thrombosis) | 3.5 | Cardiovascular |
| 190 | Hypomania (a milder form of mania) | 3.4 | Neuropsychiatric – Emotion and Mood |
| 191 | Facial paralysis | 3.4 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 192 | Tunnel vision | 3.3 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 193 | Decrease in size of testicles/penis (cis men) | 3.2 | Reproductive/Endocrine/Genitourinary |
| 194 | Pain in testicles (nonbinary) | 3.2 | Reproductive/Endocrine/Genitourinary |
| 195 | Tactile (touch) Hallucinations | 3.1 | Neuropsychiatric – Hallucinations |
| 196 | Early Menopause (cis women in 40s) | 3 | Reproductive/Endocrine/Genitourinary |
| 197 | Delusions | 3 | Neuropsychiatric – Emotion and Mood |
| 198 | Shingles | 2.8 | Immunologic/Autoimmune |
| 199 | Seizures (suspected) | 2.7 | Neuropsychiatric – Sensorimotor |
| 200 | Heightened sense of taste | 2.7 | Neuropsychiatric – Taste and Smell |
| 201 | Mania (abnormally elevated/excited mood, decreased need for sleep, occasionally with delusions) | 2.6 | Neuropsychiatric – Emotion and Mood |
| 202 | Hallucinations, other | 2.3 | Neuropsychiatric – Hallucinations |
| 203 | Low blood sugar (if measured) | 1.7 | Reproductive/Endocrine/Genitourinary |
| 204 | Decrease in size of testicles/penis (nonbinary) | 1.6 | Reproductive/Endocrine/Genitourinary |
| 205 | Other semen/penis/testicles issues (nonbinary) | 1.6 | Reproductive/Endocrine/Genitourinary |
| 206 | Post-Menopausal bleeding/spotting (cis women in 40s) | 1.3 | Reproductive/Endocrine/Genitourinary |
| 207 | Total loss of vision | 1 | HEENT (Head, Ear, Eyes, Nose, Throat) |
| 208 | Seizures (confirmed) | 0.6 | Neuropsychiatric – Sensorimotor |
| 209 | Early Menopause (cis women under 40) | 0.3 | Reproductive/Endocrine/Genitourinary |