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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
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)?(Required.)
2.How were you diagnosed with Covid19? (It's OK if you didn't get a test or confirmed diagnosis)
3.How long have you had/did you have Long COVID symptoms (or ME/CFS not caused by Covid)?(Required.)
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")(Required.)
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)(Required.)
N/A
Worsened
Relatively unchanged
Improved
Cured/completely resolved
Anti-Covid19 Monoclonal antibodies
Paxlovid
Molupiravir
Remdesivir
Statins (lovastatin, pravastatin, simvastatin, atorvastatin, etc.)
Maraviroc
Hyperbaric oxygen (HBOT)
Transcutaneous Vagus nerve stimulation device
Stellate ganglion block(s) or other sympathetic blocks
Plaquenil (hydroxychloroquine)
Corticosteroids (oral or IV: i.e. hydrocortisone, prednisone, solumedrol, etc.)
IVIG or SCIG (Gammunex, Gammagard, Cuvitru, Hizentra, etc.)
Apheresis (i.e. HELP Apheresis, Immuneadsorption, Plasmapheresis, etc.)
Antihistamines (benadryl, zyrtec, claritin, pepcid, etc.)
LDN (low dose naltrexone)
Gabapentin, Lyrica, or Cymbalta
Tricyclics (amitriptyline, nortriptyline, etc.)
Opioids (hydrocodone, oxycodone, fentanyl, etc.)
Prescription medications for sleep (Trazodone, ambien, lunesta, belsomra, or other)
Aspirin
NSAIDs (i.e. ibuprofen, indomethacin, naproxen, celebrex, etc.)
Other Blood thinners (i.e. Xarelto, Apixiban, heparin, lovenox, warfarin, etc.)
Lumbrokinase, serrapeptase or other enzyme for blood clotting
Ivermectin
Niclosimide
Alinia (nitazoxinide)
Vitamin B12
Vitamin B3 (niacin) or Niacinamide (Slow niacin)
Vitamin B6
Vitamin C
Folate or methylated forms of folate
Vitamin D
Magnesium
CBD +/- THC (cannabis)
Phosphatidylcholine or lecithin
Covid19 vaccine (Pfizer, Moderna, J&J, Covaxin, SinoPharm, etc.)
Pycnogenol
Physical, vestibular, and/or occupational therapy
Pacing my activity
Exercise or exercise therapy
Cognitive behavioral therapy or similar
EMDR
Hypnotherapy
Meditation or mindfulness practice
Breathing techniques (box breathing, pranayama, etc.)
Spiritual practice
BC007
Ketogenic or carnivore diet
Eating small meals frequently throughout the day
Gluten free diet
Dairy free diet
Low sugar diet
Low histamine diet
Low FODMAP diet
Vegetarian or vegan diet
High carbohydrate diet
Angiotensin receptor blocker or ARB (losartan, telmisartan, candesartan, etc.)
Mast cell stabilizers (cromolyn, ketotifen, PEA, luteolin, nettle, perilla extract, etc.)
Jinhua Qinggan Granules (JHQG) [Traditional Chinese Medicine]
Acupuncture
Benzodiazepines (alprazolam/ativan, diazepam/valium, clonazepam/klonopin, xanax, etc.)
Muscle relaxants (cyclobenzaprine/flexeril, tizanidine/zanaflex, etc.)
Exosome infusions (IV)
Stem cell infusions (IV) or local injections into tissue
IV Ozone therapy
Glutathione (IV, oral, sublingual)
CoQ10 and/or ubiquinol
NAD (IV or using electrogradient patches on the skin)
NADH
IV saline infusions (with nothing else added)
Wearing a cervical spine collar or doing cervical spine traction (manual, mechanical or surgical)
Tethered cord release surgery
Oxaloacetate supplements (at least 1000mg twice daily for 4 weeks, not lower doses)
Patching or otherwise repairing a CSF
Ampligen
Oximatrine or Equilibrant
Rituxan
Cellcept (mycofenolate motil)
Imuran (azathioprine)
Mestinon (pyridostogmine)
Cytoxan (cyclophosphamide)
Colcrys (colchicine)
Covid19 infection or re-infection [option added 2.2.22 1:13pmPST]
Beta blockers or Ivabradine/corlanor [added 2.2.22 10:24p pst]
Abilify [added 2.2.22 10:24p pst]
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)
7.Where do you live?(Required.)
8.What age range are you in?
9.Gender assigned at birth:
10.What are/were your biggest barriers to accessing treatment for your Long COVID symptoms or ME/CFS? (Choose up to 3)
11.Any additional notes or clarifications regarding your answers from previous questions (please include the question #) can be added here if needed: