Long COVID / PASC Treatment Survey

This survey will help my team get an idea of how many Long COVID sufferers have responded to certain treatments or interventions they have tried, how their responses compare to those with ME/CFS not caused by COVID, as well as what pre-existing conditions may be common in those who develop Long COVID, and much more.

The more responses we get, the more clout my team will have in approaching the manufacturers of promising therapies, procedural specialists, etc. for discounted therapies and trial support for Long COVID sufferers! So please share this survey with any people, groups, threads, forums related to Long COVID that you are connected to!

The full survey looks long, but took a friend 6 min to complete. If you prefer not having to scroll down for each question, please complete the survey on a computer rather than on a phone.

Pro tip: If you are short on energy, only answer the starred questions.

Thank you so much for taking the time to support our Long COVID work by filling this out!

- Jennifer Curtin, MD and the RTHM Clinic team

Question Title

* 1. Do you have Long COVID/PASC (i.e. have you had new or persisting symptoms more than 4 weeks after onset of Covid19 symptoms or infection)?

Yes, I have Long COVID currently

I had Long COVID, but recovered

I developed Long COVID symptoms after a Covid19 vaccine, not after Covid19 infection, and am still symptomatic

I developed Long COVID symptoms after a Covid vaccine, but have recovered

I have ME/CFS that was NOT caused by COVID

I had ME/CFS that was NOT caused by COVID, but recovered

None of the above

Other (please specify)

Question Title

* 2. How were you diagnosed with Covid19? (It's OK if you didn't get a test or confirmed diagnosis)

PCR

Antigen test

Antibody test

Diagnosed clinically by a healthcare provider

Wasn't able to get tested or formally diagnosed

I have not had Covid19 (that I'm aware of)

Other (please specify)

Question Title

* 3. How long have you had/did you have Long COVID symptoms (or ME/CFS not caused by Covid)?

< 2 months

2-6 months

7-12 months

> 12 months

Other (please specify)

Question Title

* 4. What are/were your worst Long COVID (or ME/CFS) symptoms? (Pick your top 5 worst symptoms, or write in any not listed under "other")

Fatigue and/or post exertional malaise (PEM)

Disrupted or unrefreshing sleep

Gastrointestinal symptoms (diarrhea, bloating, cramping, etc.)

Chest pain or pressure

Shortness of breath, wheezing, or other difficulty breathing

Anxiety, depression, PTSD, or other symptoms impacting mental health

Joint and/or muscle aches and pains

Brain fog or other difficulties with cognitive functions

Racing heart, palpitations or arrhythmia

Seizures, convulsions, or tremors

Blood clots in the legs (DVT), brain (stroke), lungs (PE), or other location

Autonomic nervous system symptoms (POTS, orthostatic hypotension, etc.)

Loss or alterations of sense of taste and or smell

Reproductive system issues (infertility, menstrual cycle disruption, erectile dysfunction)

Skin symptoms (other than hives)

Dizziness or vertigo

Problems with vision or hearing

Allergies (new or worsening), anaphylaxis, hives, or mast cell disorder

Headaches, migraines, or head pressure

Sensory sensitivity, easily develop sensory overload

Fevers, chills, sweats

Internal sensation of buzzing, vibrating, trembling

Neuropathic pain (often burning, shooting, zapping, pricking pain)

Numbness, decreased sensation, or phantom sensations

Kidney or urinary symptoms (frequent urination, difficulty urinating or fully emptying the bladder, etc.)

Weakness or paralysis

Other (please specify)

Question Title

* 5. Did any treatments or interventions significantly IMPROVE or WORSEN your Long COVID (or ME/CFS) symptoms? (If you haven't tried a particular treatment, choose N/A)

	N/A	Worsened	Relatively unchanged	Improved	Cured/completely resolved
Anti-Covid19 Monoclonal antibodies	Anti-Covid19 Monoclonal antibodies N/A	Anti-Covid19 Monoclonal antibodies Worsened	Anti-Covid19 Monoclonal antibodies Relatively unchanged	Anti-Covid19 Monoclonal antibodies Improved	Anti-Covid19 Monoclonal antibodies Cured/completely resolved
Paxlovid	Paxlovid N/A	Paxlovid Worsened	Paxlovid Relatively unchanged	Paxlovid Improved	Paxlovid Cured/completely resolved
Molupiravir	Molupiravir N/A	Molupiravir Worsened	Molupiravir Relatively unchanged	Molupiravir Improved	Molupiravir Cured/completely resolved
Remdesivir	Remdesivir N/A	Remdesivir Worsened	Remdesivir Relatively unchanged	Remdesivir Improved	Remdesivir Cured/completely resolved
Statins (lovastatin, pravastatin, simvastatin, atorvastatin, etc.)	Statins (lovastatin, pravastatin, simvastatin, atorvastatin, etc.) N/A	Statins (lovastatin, pravastatin, simvastatin, atorvastatin, etc.) Worsened	Statins (lovastatin, pravastatin, simvastatin, atorvastatin, etc.) Relatively unchanged	Statins (lovastatin, pravastatin, simvastatin, atorvastatin, etc.) Improved	Statins (lovastatin, pravastatin, simvastatin, atorvastatin, etc.) Cured/completely resolved
Maraviroc	Maraviroc N/A	Maraviroc Worsened	Maraviroc Relatively unchanged	Maraviroc Improved	Maraviroc Cured/completely resolved
Hyperbaric oxygen (HBOT)	Hyperbaric oxygen (HBOT) N/A	Hyperbaric oxygen (HBOT) Worsened	Hyperbaric oxygen (HBOT) Relatively unchanged	Hyperbaric oxygen (HBOT) Improved	Hyperbaric oxygen (HBOT) Cured/completely resolved
Transcutaneous Vagus nerve stimulation device	Transcutaneous Vagus nerve stimulation device N/A	Transcutaneous Vagus nerve stimulation device Worsened	Transcutaneous Vagus nerve stimulation device Relatively unchanged	Transcutaneous Vagus nerve stimulation device Improved	Transcutaneous Vagus nerve stimulation device Cured/completely resolved
Stellate ganglion block(s) or other sympathetic blocks	Stellate ganglion block(s) or other sympathetic blocks N/A	Stellate ganglion block(s) or other sympathetic blocks Worsened	Stellate ganglion block(s) or other sympathetic blocks Relatively unchanged	Stellate ganglion block(s) or other sympathetic blocks Improved	Stellate ganglion block(s) or other sympathetic blocks Cured/completely resolved
Plaquenil (hydroxychloroquine)	Plaquenil (hydroxychloroquine) N/A	Plaquenil (hydroxychloroquine) Worsened	Plaquenil (hydroxychloroquine) Relatively unchanged	Plaquenil (hydroxychloroquine) Improved	Plaquenil (hydroxychloroquine) Cured/completely resolved
Corticosteroids (oral or IV: i.e. hydrocortisone, prednisone, solumedrol, etc.)	Corticosteroids (oral or IV: i.e. hydrocortisone, prednisone, solumedrol, etc.) N/A	Corticosteroids (oral or IV: i.e. hydrocortisone, prednisone, solumedrol, etc.) Worsened	Corticosteroids (oral or IV: i.e. hydrocortisone, prednisone, solumedrol, etc.) Relatively unchanged	Corticosteroids (oral or IV: i.e. hydrocortisone, prednisone, solumedrol, etc.) Improved	Corticosteroids (oral or IV: i.e. hydrocortisone, prednisone, solumedrol, etc.) Cured/completely resolved
IVIG or SCIG (Gammunex, Gammagard, Cuvitru, Hizentra, etc.)	IVIG or SCIG (Gammunex, Gammagard, Cuvitru, Hizentra, etc.) N/A	IVIG or SCIG (Gammunex, Gammagard, Cuvitru, Hizentra, etc.) Worsened	IVIG or SCIG (Gammunex, Gammagard, Cuvitru, Hizentra, etc.) Relatively unchanged	IVIG or SCIG (Gammunex, Gammagard, Cuvitru, Hizentra, etc.) Improved	IVIG or SCIG (Gammunex, Gammagard, Cuvitru, Hizentra, etc.) Cured/completely resolved
Apheresis (i.e. HELP Apheresis, Immuneadsorption, Plasmapheresis, etc.)	Apheresis (i.e. HELP Apheresis, Immuneadsorption, Plasmapheresis, etc.) N/A	Apheresis (i.e. HELP Apheresis, Immuneadsorption, Plasmapheresis, etc.) Worsened	Apheresis (i.e. HELP Apheresis, Immuneadsorption, Plasmapheresis, etc.) Relatively unchanged	Apheresis (i.e. HELP Apheresis, Immuneadsorption, Plasmapheresis, etc.) Improved	Apheresis (i.e. HELP Apheresis, Immuneadsorption, Plasmapheresis, etc.) Cured/completely resolved
Antihistamines (benadryl, zyrtec, claritin, pepcid, etc.)	Antihistamines (benadryl, zyrtec, claritin, pepcid, etc.) N/A	Antihistamines (benadryl, zyrtec, claritin, pepcid, etc.) Worsened	Antihistamines (benadryl, zyrtec, claritin, pepcid, etc.) Relatively unchanged	Antihistamines (benadryl, zyrtec, claritin, pepcid, etc.) Improved	Antihistamines (benadryl, zyrtec, claritin, pepcid, etc.) Cured/completely resolved
LDN (low dose naltrexone)	LDN (low dose naltrexone) N/A	LDN (low dose naltrexone) Worsened	LDN (low dose naltrexone) Relatively unchanged	LDN (low dose naltrexone) Improved	LDN (low dose naltrexone) Cured/completely resolved
Gabapentin, Lyrica, or Cymbalta	Gabapentin, Lyrica, or Cymbalta N/A	Gabapentin, Lyrica, or Cymbalta Worsened	Gabapentin, Lyrica, or Cymbalta Relatively unchanged	Gabapentin, Lyrica, or Cymbalta Improved	Gabapentin, Lyrica, or Cymbalta Cured/completely resolved
Tricyclics (amitriptyline, nortriptyline, etc.)	Tricyclics (amitriptyline, nortriptyline, etc.) N/A	Tricyclics (amitriptyline, nortriptyline, etc.) Worsened	Tricyclics (amitriptyline, nortriptyline, etc.) Relatively unchanged	Tricyclics (amitriptyline, nortriptyline, etc.) Improved	Tricyclics (amitriptyline, nortriptyline, etc.) Cured/completely resolved
Opioids (hydrocodone, oxycodone, fentanyl, etc.)	Opioids (hydrocodone, oxycodone, fentanyl, etc.) N/A	Opioids (hydrocodone, oxycodone, fentanyl, etc.) Worsened	Opioids (hydrocodone, oxycodone, fentanyl, etc.) Relatively unchanged	Opioids (hydrocodone, oxycodone, fentanyl, etc.) Improved	Opioids (hydrocodone, oxycodone, fentanyl, etc.) Cured/completely resolved
Prescription medications for sleep (Trazodone, ambien, lunesta, belsomra, or other)	Prescription medications for sleep (Trazodone, ambien, lunesta, belsomra, or other) N/A	Prescription medications for sleep (Trazodone, ambien, lunesta, belsomra, or other) Worsened	Prescription medications for sleep (Trazodone, ambien, lunesta, belsomra, or other) Relatively unchanged	Prescription medications for sleep (Trazodone, ambien, lunesta, belsomra, or other) Improved	Prescription medications for sleep (Trazodone, ambien, lunesta, belsomra, or other) Cured/completely resolved
Aspirin	Aspirin N/A	Aspirin Worsened	Aspirin Relatively unchanged	Aspirin Improved	Aspirin Cured/completely resolved
NSAIDs (i.e. ibuprofen, indomethacin, naproxen, celebrex, etc.)	NSAIDs (i.e. ibuprofen, indomethacin, naproxen, celebrex, etc.) N/A	NSAIDs (i.e. ibuprofen, indomethacin, naproxen, celebrex, etc.) Worsened	NSAIDs (i.e. ibuprofen, indomethacin, naproxen, celebrex, etc.) Relatively unchanged	NSAIDs (i.e. ibuprofen, indomethacin, naproxen, celebrex, etc.) Improved	NSAIDs (i.e. ibuprofen, indomethacin, naproxen, celebrex, etc.) Cured/completely resolved
Other Blood thinners (i.e. Xarelto, Apixiban, heparin, lovenox, warfarin, etc.)	Other Blood thinners (i.e. Xarelto, Apixiban, heparin, lovenox, warfarin, etc.) N/A	Other Blood thinners (i.e. Xarelto, Apixiban, heparin, lovenox, warfarin, etc.) Worsened	Other Blood thinners (i.e. Xarelto, Apixiban, heparin, lovenox, warfarin, etc.) Relatively unchanged	Other Blood thinners (i.e. Xarelto, Apixiban, heparin, lovenox, warfarin, etc.) Improved	Other Blood thinners (i.e. Xarelto, Apixiban, heparin, lovenox, warfarin, etc.) Cured/completely resolved
Lumbrokinase, serrapeptase or other enzyme for blood clotting	Lumbrokinase, serrapeptase or other enzyme for blood clotting N/A	Lumbrokinase, serrapeptase or other enzyme for blood clotting Worsened	Lumbrokinase, serrapeptase or other enzyme for blood clotting Relatively unchanged	Lumbrokinase, serrapeptase or other enzyme for blood clotting Improved	Lumbrokinase, serrapeptase or other enzyme for blood clotting Cured/completely resolved
Ivermectin	Ivermectin N/A	Ivermectin Worsened	Ivermectin Relatively unchanged	Ivermectin Improved	Ivermectin Cured/completely resolved
Niclosimide	Niclosimide N/A	Niclosimide Worsened	Niclosimide Relatively unchanged	Niclosimide Improved	Niclosimide Cured/completely resolved
Alinia (nitazoxinide)	Alinia (nitazoxinide) N/A	Alinia (nitazoxinide) Worsened	Alinia (nitazoxinide) Relatively unchanged	Alinia (nitazoxinide) Improved	Alinia (nitazoxinide) Cured/completely resolved
Vitamin B12	Vitamin B12 N/A	Vitamin B12 Worsened	Vitamin B12 Relatively unchanged	Vitamin B12 Improved	Vitamin B12 Cured/completely resolved
Vitamin B3 (niacin) or Niacinamide (Slow niacin)	Vitamin B3 (niacin) or Niacinamide (Slow niacin) N/A	Vitamin B3 (niacin) or Niacinamide (Slow niacin) Worsened	Vitamin B3 (niacin) or Niacinamide (Slow niacin) Relatively unchanged	Vitamin B3 (niacin) or Niacinamide (Slow niacin) Improved	Vitamin B3 (niacin) or Niacinamide (Slow niacin) Cured/completely resolved
Vitamin B6	Vitamin B6 N/A	Vitamin B6 Worsened	Vitamin B6 Relatively unchanged	Vitamin B6 Improved	Vitamin B6 Cured/completely resolved
Vitamin C	Vitamin C N/A	Vitamin C Worsened	Vitamin C Relatively unchanged	Vitamin C Improved	Vitamin C Cured/completely resolved
Folate or methylated forms of folate	Folate or methylated forms of folate N/A	Folate or methylated forms of folate Worsened	Folate or methylated forms of folate Relatively unchanged	Folate or methylated forms of folate Improved	Folate or methylated forms of folate Cured/completely resolved
Vitamin D	Vitamin D N/A	Vitamin D Worsened	Vitamin D Relatively unchanged	Vitamin D Improved	Vitamin D Cured/completely resolved
Magnesium	Magnesium N/A	Magnesium Worsened	Magnesium Relatively unchanged	Magnesium Improved	Magnesium Cured/completely resolved
CBD +/- THC (cannabis)	CBD +/- THC (cannabis) N/A	CBD +/- THC (cannabis) Worsened	CBD +/- THC (cannabis) Relatively unchanged	CBD +/- THC (cannabis) Improved	CBD +/- THC (cannabis) Cured/completely resolved
Phosphatidylcholine or lecithin	Phosphatidylcholine or lecithin N/A	Phosphatidylcholine or lecithin Worsened	Phosphatidylcholine or lecithin Relatively unchanged	Phosphatidylcholine or lecithin Improved	Phosphatidylcholine or lecithin Cured/completely resolved
Covid19 vaccine (Pfizer, Moderna, J&J, Covaxin, SinoPharm, etc.)	Covid19 vaccine (Pfizer, Moderna, J&J, Covaxin, SinoPharm, etc.) N/A	Covid19 vaccine (Pfizer, Moderna, J&J, Covaxin, SinoPharm, etc.) Worsened	Covid19 vaccine (Pfizer, Moderna, J&J, Covaxin, SinoPharm, etc.) Relatively unchanged	Covid19 vaccine (Pfizer, Moderna, J&J, Covaxin, SinoPharm, etc.) Improved	Covid19 vaccine (Pfizer, Moderna, J&J, Covaxin, SinoPharm, etc.) Cured/completely resolved
Pycnogenol	Pycnogenol N/A	Pycnogenol Worsened	Pycnogenol Relatively unchanged	Pycnogenol Improved	Pycnogenol Cured/completely resolved
Physical, vestibular, and/or occupational therapy	Physical, vestibular, and/or occupational therapy N/A	Physical, vestibular, and/or occupational therapy Worsened	Physical, vestibular, and/or occupational therapy Relatively unchanged	Physical, vestibular, and/or occupational therapy Improved	Physical, vestibular, and/or occupational therapy Cured/completely resolved
Pacing my activity	Pacing my activity N/A	Pacing my activity Worsened	Pacing my activity Relatively unchanged	Pacing my activity Improved	Pacing my activity Cured/completely resolved
Exercise or exercise therapy	Exercise or exercise therapy N/A	Exercise or exercise therapy Worsened	Exercise or exercise therapy Relatively unchanged	Exercise or exercise therapy Improved	Exercise or exercise therapy Cured/completely resolved
Cognitive behavioral therapy or similar	Cognitive behavioral therapy or similar N/A	Cognitive behavioral therapy or similar Worsened	Cognitive behavioral therapy or similar Relatively unchanged	Cognitive behavioral therapy or similar Improved	Cognitive behavioral therapy or similar Cured/completely resolved
EMDR	EMDR N/A	EMDR Worsened	EMDR Relatively unchanged	EMDR Improved	EMDR Cured/completely resolved
Hypnotherapy	Hypnotherapy N/A	Hypnotherapy Worsened	Hypnotherapy Relatively unchanged	Hypnotherapy Improved	Hypnotherapy Cured/completely resolved
Meditation or mindfulness practice	Meditation or mindfulness practice N/A	Meditation or mindfulness practice Worsened	Meditation or mindfulness practice Relatively unchanged	Meditation or mindfulness practice Improved	Meditation or mindfulness practice Cured/completely resolved
Breathing techniques (box breathing, pranayama, etc.)	Breathing techniques (box breathing, pranayama, etc.) N/A	Breathing techniques (box breathing, pranayama, etc.) Worsened	Breathing techniques (box breathing, pranayama, etc.) Relatively unchanged	Breathing techniques (box breathing, pranayama, etc.) Improved	Breathing techniques (box breathing, pranayama, etc.) Cured/completely resolved
Spiritual practice	Spiritual practice N/A	Spiritual practice Worsened	Spiritual practice Relatively unchanged	Spiritual practice Improved	Spiritual practice Cured/completely resolved
BC007	BC007 N/A	BC007 Worsened	BC007 Relatively unchanged	BC007 Improved	BC007 Cured/completely resolved
Ketogenic or carnivore diet	Ketogenic or carnivore diet N/A	Ketogenic or carnivore diet Worsened	Ketogenic or carnivore diet Relatively unchanged	Ketogenic or carnivore diet Improved	Ketogenic or carnivore diet Cured/completely resolved
Eating small meals frequently throughout the day	Eating small meals frequently throughout the day N/A	Eating small meals frequently throughout the day Worsened	Eating small meals frequently throughout the day Relatively unchanged	Eating small meals frequently throughout the day Improved	Eating small meals frequently throughout the day Cured/completely resolved
Gluten free diet	Gluten free diet N/A	Gluten free diet Worsened	Gluten free diet Relatively unchanged	Gluten free diet Improved	Gluten free diet Cured/completely resolved
Dairy free diet	Dairy free diet N/A	Dairy free diet Worsened	Dairy free diet Relatively unchanged	Dairy free diet Improved	Dairy free diet Cured/completely resolved
Low sugar diet	Low sugar diet N/A	Low sugar diet Worsened	Low sugar diet Relatively unchanged	Low sugar diet Improved	Low sugar diet Cured/completely resolved
Low histamine diet	Low histamine diet N/A	Low histamine diet Worsened	Low histamine diet Relatively unchanged	Low histamine diet Improved	Low histamine diet Cured/completely resolved
Low FODMAP diet	Low FODMAP diet N/A	Low FODMAP diet Worsened	Low FODMAP diet Relatively unchanged	Low FODMAP diet Improved	Low FODMAP diet Cured/completely resolved
Vegetarian or vegan diet	Vegetarian or vegan diet N/A	Vegetarian or vegan diet Worsened	Vegetarian or vegan diet Relatively unchanged	Vegetarian or vegan diet Improved	Vegetarian or vegan diet Cured/completely resolved
High carbohydrate diet	High carbohydrate diet N/A	High carbohydrate diet Worsened	High carbohydrate diet Relatively unchanged	High carbohydrate diet Improved	High carbohydrate diet Cured/completely resolved
Angiotensin receptor blocker or ARB (losartan, telmisartan, candesartan, etc.)	Angiotensin receptor blocker or ARB (losartan, telmisartan, candesartan, etc.) N/A	Angiotensin receptor blocker or ARB (losartan, telmisartan, candesartan, etc.) Worsened	Angiotensin receptor blocker or ARB (losartan, telmisartan, candesartan, etc.) Relatively unchanged	Angiotensin receptor blocker or ARB (losartan, telmisartan, candesartan, etc.) Improved	Angiotensin receptor blocker or ARB (losartan, telmisartan, candesartan, etc.) Cured/completely resolved
Mast cell stabilizers (cromolyn, ketotifen, PEA, luteolin, nettle, perilla extract, etc.)	Mast cell stabilizers (cromolyn, ketotifen, PEA, luteolin, nettle, perilla extract, etc.) N/A	Mast cell stabilizers (cromolyn, ketotifen, PEA, luteolin, nettle, perilla extract, etc.) Worsened	Mast cell stabilizers (cromolyn, ketotifen, PEA, luteolin, nettle, perilla extract, etc.) Relatively unchanged	Mast cell stabilizers (cromolyn, ketotifen, PEA, luteolin, nettle, perilla extract, etc.) Improved	Mast cell stabilizers (cromolyn, ketotifen, PEA, luteolin, nettle, perilla extract, etc.) Cured/completely resolved
Jinhua Qinggan Granules (JHQG) [Traditional Chinese Medicine]	Jinhua Qinggan Granules (JHQG) [Traditional Chinese Medicine] N/A	Jinhua Qinggan Granules (JHQG) [Traditional Chinese Medicine] Worsened	Jinhua Qinggan Granules (JHQG) [Traditional Chinese Medicine] Relatively unchanged	Jinhua Qinggan Granules (JHQG) [Traditional Chinese Medicine] Improved	Jinhua Qinggan Granules (JHQG) [Traditional Chinese Medicine] Cured/completely resolved
Acupuncture	Acupuncture N/A	Acupuncture Worsened	Acupuncture Relatively unchanged	Acupuncture Improved	Acupuncture Cured/completely resolved
Benzodiazepines (alprazolam/ativan, diazepam/valium, clonazepam/klonopin, xanax, etc.)	Benzodiazepines (alprazolam/ativan, diazepam/valium, clonazepam/klonopin, xanax, etc.) N/A	Benzodiazepines (alprazolam/ativan, diazepam/valium, clonazepam/klonopin, xanax, etc.) Worsened	Benzodiazepines (alprazolam/ativan, diazepam/valium, clonazepam/klonopin, xanax, etc.) Relatively unchanged	Benzodiazepines (alprazolam/ativan, diazepam/valium, clonazepam/klonopin, xanax, etc.) Improved	Benzodiazepines (alprazolam/ativan, diazepam/valium, clonazepam/klonopin, xanax, etc.) Cured/completely resolved
Muscle relaxants (cyclobenzaprine/flexeril, tizanidine/zanaflex, etc.)	Muscle relaxants (cyclobenzaprine/flexeril, tizanidine/zanaflex, etc.) N/A	Muscle relaxants (cyclobenzaprine/flexeril, tizanidine/zanaflex, etc.) Worsened	Muscle relaxants (cyclobenzaprine/flexeril, tizanidine/zanaflex, etc.) Relatively unchanged	Muscle relaxants (cyclobenzaprine/flexeril, tizanidine/zanaflex, etc.) Improved	Muscle relaxants (cyclobenzaprine/flexeril, tizanidine/zanaflex, etc.) Cured/completely resolved
Exosome infusions (IV)	Exosome infusions (IV) N/A	Exosome infusions (IV) Worsened	Exosome infusions (IV) Relatively unchanged	Exosome infusions (IV) Improved	Exosome infusions (IV) Cured/completely resolved
Stem cell infusions (IV) or local injections into tissue	Stem cell infusions (IV) or local injections into tissue N/A	Stem cell infusions (IV) or local injections into tissue Worsened	Stem cell infusions (IV) or local injections into tissue Relatively unchanged	Stem cell infusions (IV) or local injections into tissue Improved	Stem cell infusions (IV) or local injections into tissue Cured/completely resolved
IV Ozone therapy	IV Ozone therapy N/A	IV Ozone therapy Worsened	IV Ozone therapy Relatively unchanged	IV Ozone therapy Improved	IV Ozone therapy Cured/completely resolved
Glutathione (IV, oral, sublingual)	Glutathione (IV, oral, sublingual) N/A	Glutathione (IV, oral, sublingual) Worsened	Glutathione (IV, oral, sublingual) Relatively unchanged	Glutathione (IV, oral, sublingual) Improved	Glutathione (IV, oral, sublingual) Cured/completely resolved
CoQ10 and/or ubiquinol	CoQ10 and/or ubiquinol N/A	CoQ10 and/or ubiquinol Worsened	CoQ10 and/or ubiquinol Relatively unchanged	CoQ10 and/or ubiquinol Improved	CoQ10 and/or ubiquinol Cured/completely resolved
NAD (IV or using electrogradient patches on the skin)	NAD (IV or using electrogradient patches on the skin) N/A	NAD (IV or using electrogradient patches on the skin) Worsened	NAD (IV or using electrogradient patches on the skin) Relatively unchanged	NAD (IV or using electrogradient patches on the skin) Improved	NAD (IV or using electrogradient patches on the skin) Cured/completely resolved
NADH	NADH N/A	NADH Worsened	NADH Relatively unchanged	NADH Improved	NADH Cured/completely resolved
IV saline infusions (with nothing else added)	IV saline infusions (with nothing else added) N/A	IV saline infusions (with nothing else added) Worsened	IV saline infusions (with nothing else added) Relatively unchanged	IV saline infusions (with nothing else added) Improved	IV saline infusions (with nothing else added) Cured/completely resolved
Wearing a cervical spine collar or doing cervical spine traction (manual, mechanical or surgical)	Wearing a cervical spine collar or doing cervical spine traction (manual, mechanical or surgical) N/A	Wearing a cervical spine collar or doing cervical spine traction (manual, mechanical or surgical) Worsened	Wearing a cervical spine collar or doing cervical spine traction (manual, mechanical or surgical) Relatively unchanged	Wearing a cervical spine collar or doing cervical spine traction (manual, mechanical or surgical) Improved	Wearing a cervical spine collar or doing cervical spine traction (manual, mechanical or surgical) Cured/completely resolved
Tethered cord release surgery	Tethered cord release surgery N/A	Tethered cord release surgery Worsened	Tethered cord release surgery Relatively unchanged	Tethered cord release surgery Improved	Tethered cord release surgery Cured/completely resolved
Oxaloacetate supplements (at least 1000mg twice daily for 4 weeks, not lower doses)	Oxaloacetate supplements (at least 1000mg twice daily for 4 weeks, not lower doses) N/A	Oxaloacetate supplements (at least 1000mg twice daily for 4 weeks, not lower doses) Worsened	Oxaloacetate supplements (at least 1000mg twice daily for 4 weeks, not lower doses) Relatively unchanged	Oxaloacetate supplements (at least 1000mg twice daily for 4 weeks, not lower doses) Improved	Oxaloacetate supplements (at least 1000mg twice daily for 4 weeks, not lower doses) Cured/completely resolved
Patching or otherwise repairing a CSF	Patching or otherwise repairing a CSF N/A	Patching or otherwise repairing a CSF Worsened	Patching or otherwise repairing a CSF Relatively unchanged	Patching or otherwise repairing a CSF Improved	Patching or otherwise repairing a CSF Cured/completely resolved
Ampligen	Ampligen N/A	Ampligen Worsened	Ampligen Relatively unchanged	Ampligen Improved	Ampligen Cured/completely resolved
Oximatrine or Equilibrant	Oximatrine or Equilibrant N/A	Oximatrine or Equilibrant Worsened	Oximatrine or Equilibrant Relatively unchanged	Oximatrine or Equilibrant Improved	Oximatrine or Equilibrant Cured/completely resolved
Rituxan	Rituxan N/A	Rituxan Worsened	Rituxan Relatively unchanged	Rituxan Improved	Rituxan Cured/completely resolved
Cellcept (mycofenolate motil)	Cellcept (mycofenolate motil) N/A	Cellcept (mycofenolate motil) Worsened	Cellcept (mycofenolate motil) Relatively unchanged	Cellcept (mycofenolate motil) Improved	Cellcept (mycofenolate motil) Cured/completely resolved
Imuran (azathioprine)	Imuran (azathioprine) N/A	Imuran (azathioprine) Worsened	Imuran (azathioprine) Relatively unchanged	Imuran (azathioprine) Improved	Imuran (azathioprine) Cured/completely resolved
Mestinon (pyridostogmine)	Mestinon (pyridostogmine) N/A	Mestinon (pyridostogmine) Worsened	Mestinon (pyridostogmine) Relatively unchanged	Mestinon (pyridostogmine) Improved	Mestinon (pyridostogmine) Cured/completely resolved
Cytoxan (cyclophosphamide)	Cytoxan (cyclophosphamide) N/A	Cytoxan (cyclophosphamide) Worsened	Cytoxan (cyclophosphamide) Relatively unchanged	Cytoxan (cyclophosphamide) Improved	Cytoxan (cyclophosphamide) Cured/completely resolved
Colcrys (colchicine)	Colcrys (colchicine) N/A	Colcrys (colchicine) Worsened	Colcrys (colchicine) Relatively unchanged	Colcrys (colchicine) Improved	Colcrys (colchicine) Cured/completely resolved
Covid19 infection or re-infection [option added 2.2.22 1:13pmPST]	Covid19 infection or re-infection [option added 2.2.22 1:13pmPST] N/A	Covid19 infection or re-infection [option added 2.2.22 1:13pmPST] Worsened	Covid19 infection or re-infection [option added 2.2.22 1:13pmPST] Relatively unchanged	Covid19 infection or re-infection [option added 2.2.22 1:13pmPST] Improved	Covid19 infection or re-infection [option added 2.2.22 1:13pmPST] Cured/completely resolved
Beta blockers or Ivabradine/corlanor [added 2.2.22 10:24p pst]	Beta blockers or Ivabradine/corlanor [added 2.2.22 10:24p pst] N/A	Beta blockers or Ivabradine/corlanor [added 2.2.22 10:24p pst] Worsened	Beta blockers or Ivabradine/corlanor [added 2.2.22 10:24p pst] Relatively unchanged	Beta blockers or Ivabradine/corlanor [added 2.2.22 10:24p pst] Improved	Beta blockers or Ivabradine/corlanor [added 2.2.22 10:24p pst] Cured/completely resolved
Abilify [added 2.2.22 10:24p pst]	Abilify [added 2.2.22 10:24p pst] N/A	Abilify [added 2.2.22 10:24p pst] Worsened	Abilify [added 2.2.22 10:24p pst] Relatively unchanged	Abilify [added 2.2.22 10:24p pst] Improved	Abilify [added 2.2.22 10:24p pst] Cured/completely resolved

Other (please specify)

Question Title

* 6. Prior to developing Long COVID symptoms (or ME/CFS unrelated to Covid), did you have or do any of the following? (Select all that apply)

Asthma

Allergies (including hay fever, or specific allergies) or mast cell disorders

Autoimmune disease(s) (RA, Lupus, Sjogrens, Celiac, Psoriasis, Myasthenia Gravis, Multiple Sclerosis,etc.)

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)

Diabetes or pre-diabetes

Sleep disorder (i.e. sleep apnea, insomnia, etc.)

Mental health condition (depression, anxiety, PTSD, bipolar, eating disorder, etc.)

Unusually flexible/double jointed, Joint hypermobility spectrum disorder, Ehlers Danlos Syndrome, or other collagen disorder

Fibromyalgia or other widespread chronic pain

Substance abuse disorder or addiction

Overweight or obese

Underweight

Exercise 5-7 days per week at high intensity for >1h

History of concussion or whiplash injury

High stress occupation or family life (parents with newborns, caretakers of high needs individuals, etc. count!)

Had a major life stressor in the past 1 year (death of loved one, divorce, major surgery, trauma, job loss, major financial loss, etc.)

Born with a sacral dimple, tuft of hair, mole, fatty lump just above the upper "butt crack" over the spine in the low back

Walk around on your toes or with your heels slightly not touching the ground (either as a child or as an adult)

Difficulty walking up hills or stairs (but no difficulty walking on flat surfaces or downhill)

Have diagnosed urinary retention or have difficulty fully emptying your bladder when urinating

Have incontinece of urine or stool (passing even small amounts of urine or stool without wanting to, possibly without feeling it)

Sometimes or frequently have the sensation that your head is "too heavy for your neck," your head is "bobbling" or "loose" on your neck, or hard to hold up

Frequent tinnitus (ringing ears) or vertigo (feeling like you or the room are moving when neither is)

Sensitivity to sounds, light, smells, touch, or tastes

Arnold Chairi malformation (https://kidshealth.org/en/parents/chiari.html)

Cervical spine instability that was suspected by or diagnosed by a healthcare provider

Tethered cord syndrome suspected or diagnosed by a healthcare provider

Lipedema (https://www.lipedema.org/)

Mild cognitive impairment, Alzheimers, Lewy Body or other types of dementia

Dysautonomia, POTS,

Other (please specify)

Question Title

* 7. Where do you live?

USA

Canada

Mexico

UK or Europe

Russia

East Asia

South Asia

Middle East

Africa

Central America

South America

Australia

Other (please specify)

Question Title

* 8. What age range are you in?

> 65 years old

18 - 65 years old

< 18 years old

Question Title

* 9. Gender assigned at birth:

Female

Male

Prefer not to say

Other (please specify)

Question Title

* 10. What are/were your biggest barriers to accessing treatment for your Long COVID symptoms or ME/CFS? (Choose up to 3)

I don't have access to providers who are willing/able to treat me

I cannot afford the treatments I think would help me most

I don't want to try treatments without more evidence as to whether they are truly effective for Long COVID or ME

I'm afraid I'll have a bad reaction or complication from most of the treatments

The treatments I would like to try are not offered/available where I live

I am too ill to travel (even within my current city/state/territory) to receive/complete most treatments

I do not have the social or family support (transportation, childcare, etc.) I'd need to undergo/complete treatment

I was not aware there were any treatments being studied for Long COVID or ME

I am unable to get a formal diagnosis of Long COVID or vaccine injury or ME to qualify for studies or care

The waiting list of knowledgeable providers is very long, I'm waiting to be seen

I was inaccurately declared "improved" or "cured" and discharged from a Long COVID or ME clinic or study despite still being ill

Other (please specify)

Question Title

* 11. Any additional notes or clarifications regarding your answers from previous questions (please include the question #) can be added here if needed: