The Treatment Outcomes Survey can be found HERE.

The survey takes around 3-9 minutes. You will need a Google account to view or complete the survey. (The sign-in allows you to change your answers later if you try new treatments and would like to contribute more data.)

Questions can be addressed to glennchan /at/ gmail [dot] com

An analysis of the current survey data is available below.

The data was analyzed on 2023-07-12.

Understanding the data¶

The rankings section should give a rough idea as to which treatments stand out as being promising treatments.

The section ranks all of the treatments (while ignoring those with very few data points). Then, specific types of treatments such as diet will be ranked against each another (while including treatments with very few data points). That analysis should help you understand:

  • How different types of treatments compare to each other
  • How different treatments stack up against one another within a particular category/type of treatment.

The charts section provides breakdowns for individual treatments. If a treatment has very few data points, it may be grouped together with other similar treatments.

The Symptoms versus treatment responses section analyzes whether self-reported symptoms correlate with treatment response.

The Severity analysis section looks at whether or not treatment responses are different based on peak severity (during the worst month of illness), current severity (past 30 days), and recovery (current versus peak severity).

How to use this analysis¶

If you're interested in a particular treatment, search this webpage for the name of that treatment. On desktops, use Crtl+F to bring up your browser's search function.

Treatment names are usually chosen to be short and memorable:

  • PLEX instead of plasmapheresis, therapeutic plasma exchange (TPE), etc.
  • Alinia instead of nitazoxanide.

Remember to search for brand names and short versions of a treatment's name. Usually there is a section where multiple names for a single treatment are listed- searching for any of the names will help you find the shortened memorable names.

Sections¶

  • Understanding the data
  • Rankings of treatments
  • Charts of treatment outcomes
  • Demographics
  • Symptoms versus treatment responses
  • Severity analysis
  • Additional analysis

Rankings of treatments¶

  • Significant improvement is given a score of 3.
  • Mild improvement is given a score of 1.
  • Not much benefit/harm is given a score of 0.
  • Mild worsening is given a score of -1.
  • Significant worsening is given a score of -3.
  • Effect unclear is given a score of 0.

All treatments are judged based on its average score. If all surveyees were to report mild improvement, then the average score would be 1.

For risk scoring, only the negative scores are considered. The maximum possible range is from 0 to -3.

Warning: Some treatments may be far more dangerous than they appear. In particular, many medical professionals are unaware of the risks of benzodiazepines and SSRIs such as suicide risk in adults (and children). Those drugs can also lead to withdrawal issues with long-term use. Please use some caution when interpreting the survey results. For example, deaths are not reported in the survey data because those who have passed away cannot fill out surveys.


The chart below is followed by a table showing the same data plus risk score and # of data points.

Treatments with more than 59 data points Score Risk score # of data points (out of 474 surveyees)
1 ['Pacing strategies'] 1.42 -0.01 179
2 ['Anti inflammatory diet'] 1.19 -0.02 85
3 ['Brain retraining'] 1.18 -0.06 62
4 ['Prayer'] 1.17 0.00 144
5 ['LDN'] 1.16 -0.18 80
6 ['Glutenfree diet'] 1.14 -0.03 190
7 ['Low histamine diet'] 1.10 -0.03 198
8 ['Avoiding exercise'] 1.09 -0.09 282
9 ['HBOT <=1.5 ATA', 'HBOT >1.5 ATA'] 0.97 -0.30 76
10 ['Meditation'] 0.94 -0.02 208
11 ['Benzodiazepines'] 0.88 -0.25 96
12 ['Ivermectin'] 0.85 -0.13 112
13 ['Zyrtec'] 0.78 -0.14 157
14 ['Pepcid'] 0.78 -0.17 137
15 ['Magnesium'] 0.76 -0.04 330
16 ['Intermittent fasting'] 0.71 -0.07 167
17 ['Probiotics prebiotics'] 0.67 -0.08 232
18 ['Statins', 'Red yeast rice'] 0.63 -0.25 76
19 ['Melatonin'] 0.60 -0.13 209
20 ['Plant based diet', 'Vegan diet'] 0.60 -0.12 118
21 ['B vitamins'] 0.59 -0.09 328
22 ['OMAD'] 0.59 -0.22 80
23 ['Beta blockers'] 0.57 -0.47 122
24 ['Nigella sativa capsules'] 0.54 -0.03 63
25 ['Vitamin D'] 0.54 -0.03 370
26 ['Claritin'] 0.53 -0.19 136
27 ['Corticosteroids'] 0.53 -0.40 163
28 ['Nigella sativa oil'] 0.52 -0.14 80
29 ['NAC'] 0.52 -0.08 185
30 ['IV vitamins'] 0.51 -0.16 93
31 ['Vitamin C'] 0.50 -0.02 326
32 ['Aspirin'] 0.50 -0.09 209
33 ['Acupuncture'] 0.49 -0.28 144
34 ['Fish oil etc.'] 0.49 -0.03 225
35 ['Quercetin'] 0.48 -0.11 246
36 ['CBT'] 0.48 -0.14 96
37 ['CBD THC'] 0.47 -0.20 152
38 ['Allegra'] 0.47 -0.23 73
39 ['Zinc'] 0.46 -0.04 290
40 ['K vitamins'] 0.42 -0.06 124
41 ['ALA'] 0.40 -0.13 102
42 ['Advil'] 0.35 -0.12 226
43 ['Other NSAID'] 0.33 -0.16 127
44 ['Benadryl'] 0.32 -0.24 75
45 ['Pine needle tea'] 0.28 -0.13 69
46 ['Multivitamin'] 0.28 -0.08 192
47 ['Tylenol'] 0.28 -0.08 194
48 ['Other pain relievers'] 0.12 -0.43 91
49 ['SSRIs'] 0.00 -0.55 192
50 ['Antibiotics'] -0.06 -0.49 154
51 ['Elavil', 'Doxepin', 'Pamelor', 'Clomipramine'] -0.08 -0.60 63
52 ['Light exercise'] -0.51 -0.98 306
53 ['Graded exercise therapy'] -1.08 -1.40 78
54 ['Intense exercise'] -2.13 -2.27 215

Exercise and activity-related only¶

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Pacing strategies] 1.42 -0.01 179
2 [Avoiding exercise] 1.09 -0.09 282
3 [Light exercise] -0.51 -0.98 306
4 [Graded exercise therapy] -1.08 -1.40 78
5 [Intense exercise] -2.13 -2.27 215

Blood thinning drugs + HELP apheresis¶

Please note that the sample sizes for certain treatments are very small. As well, the data may be highly biased and may not be representative of how other people might respond to blood thinning drugs.

Tylenol (acetaminophen) is not considered to be a blood-thinning drug. It is included because it is a common alternative to other drugs on this list (Advil, Aspirin, etc.).

WARNING: There is one anecdote of a ME/CFS patient worsening after HELP apheresis which eventually resulted in their death. The survey data may not fully capture the risk of that treatment.
Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Eliquis] 1.86 0.00 14
2 [Clopidogrel] 1.48 -0.04 25
3 [HELP apheresis] 1.36 -0.36 11
4 [Heparin] 0.56 -0.19 16
5 [Aspirin] 0.50 -0.09 209
6 [Advil] 0.35 -0.12 226
7 [Other NSAID] 0.33 -0.16 127
8 [Tylenol] 0.28 -0.08 194
9 [Xarelto] -0.25 -0.25 4

Current theories and treatments related to those theories¶

Pacing strategies and HBOT (high ATA) are included as reference points.

WARNING: There is one anecdote of a ME/CFS patient worsening after HELP apheresis which eventually resulted in their death. The survey data may not fully capture the risk of that treatment.
Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Eliquis] 1.86 0.00 14
2 [Clopidogrel] 1.48 -0.04 25
3 [Pacing strategies] 1.42 -0.01 179
4 [HELP apheresis] 1.36 -0.36 11
5 [HBOT >1.5 ATA] 1.35 -0.32 34
6 [Low histamine diet] 1.10 -0.03 198
7 [Multiday fasting] 1.04 -0.33 27
8 [IVIG] 1.00 -0.33 21
9 [Maraviroc] 1.00 -0.46 13
10 [Benzodiazepines] 0.88 -0.25 96
11 [24-48 hour fasting] 0.79 -0.31 52
12 [Zyrtec] 0.78 -0.14 157
13 [Pepcid] 0.78 -0.17 137
14 [Intermittent fasting] 0.71 -0.07 167
15 [HBOT <=1.5 ATA] 0.67 -0.29 42
16 [Statins, Red yeast rice] 0.63 -0.25 76
17 [OMAD] 0.59 -0.22 80
18 [Heparin] 0.56 -0.19 16
19 [Corticosteroids] 0.53 -0.40 163
20 [PLEX] 0.50 0.00 8
21 [Aspirin] 0.50 -0.09 209
22 [Quercetin] 0.48 -0.11 246
23 [Advil] 0.35 -0.12 226
24 [Other NSAID] 0.33 -0.16 127
25 [Luteolin] 0.20 -0.10 30
26 [Xarelto] -0.25 -0.25 4

Certain prescription drugs, statins, maraviroc¶

Excludes anti-depressants, anti-microbials, etc.

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Maraviroc] 1.00 -0.46 13
2 [Opiates] 0.96 -0.20 46
3 [Colchicine] 0.66 -0.45 53
4 [Statins, Red yeast rice] 0.63 -0.25 76
5 [Beta blockers] 0.57 -0.47 122
6 [Other pain relievers] 0.12 -0.43 91
7 [Antiseizure] -0.21 -0.88 24

Anti-depressants¶

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Celexa, Lexapro, Fluvoxamine, Prozac, Paxil, ... 0.02 -0.54 149
2 [Cymbalta, Effexor] -0.07 -0.58 43
3 [Elavil, Doxepin, Pamelor, Clomipramine] -0.08 -0.60 63
4 [Remeron, Seroquel, Wellbutrin] -0.24 -0.73 51

Specific psychiatric drugs, SSRIs, TCAs, anti-psychotics¶

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Paxil] 0.86 -0.29 7
2 [Fluvoxamine] 0.49 -0.42 45
3 [Celexa] 0.46 -0.31 13
4 [Seroquel] 0.31 -0.46 13
5 [Effexor] 0.23 -0.38 13
6 [Pamelor] 0.22 -0.67 9
7 [Doxepin] 0.14 -0.57 7
8 [Clomipramine] 0.00 0.00 1
9 [Wellbutrin] -0.06 -0.50 16
10 [Elavil] -0.17 -0.61 46
11 [Cymbalta] -0.20 -0.67 30
12 [Antiseizure] -0.21 -0.88 24
13 [Prozac] -0.22 -0.61 23
14 [Zoloft] -0.38 -0.62 26
15 [Lexapro] -0.44 -0.69 32
16 [Vortioxetine] -0.67 -1.00 3
17 [Remeron] -0.68 -1.05 22

Anti-histamines and certain MCAS drugs¶

While Quetiapine / Seroquel is often thought of as a TCA, it is also a H1 receptor antagonist. It is a dopamine, serotonin, and adrenergic antagonist, and a potent antihistamine with some anticholinergic properties.

DAO = Diamine Oxidase enzyme

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Rupatadine] 1.60 0.00 5
2 [Bilastine] 1.00 0.00 4
3 [Doxylamine] 1.00 0.00 2
4 [Other antihistamines] 0.95 -0.14 21
5 [Hydroxyzine] 0.88 -0.12 25
6 [Pepcid] 0.78 -0.17 137
7 [Zyrtec] 0.78 -0.14 157
8 [DAO] 0.75 -0.02 51
9 [Clarinex] 0.58 -0.05 19
10 [Claritin] 0.53 -0.19 136
11 [Acrivastine] 0.47 -0.10 59
12 [Allegra] 0.47 -0.23 73
13 [Ketotifen] 0.33 -0.39 18
14 [Benadryl] 0.32 -0.24 75
15 [Seroquel] 0.31 -0.46 13
16 [Xyzal] 0.17 -0.50 12
17 [Doxepin] 0.14 -0.57 7
18 [Ebastine] 0.00 0.00 3
19 [Seldane] 0.00 0.00 1

Other MCAS treatments and sleep drugs¶

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [LDN] 1.16 -0.18 80
2 [Low histamine diet] 1.10 -0.03 198
3 [Ambien] 1.09 -0.27 22
4 [Benzodiazepines] 0.88 -0.25 96
5 [Cromolyn] 0.65 -0.15 20

Over-the-counter supplements only¶

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Magnesium] 0.76 -0.04 330
2 [Probiotics prebiotics] 0.67 -0.08 232
3 [Melatonin] 0.60 -0.13 209
4 [B vitamins] 0.59 -0.09 328
5 [Vitamin D] 0.54 -0.03 370
6 [Nigella sativa capsules] 0.54 -0.03 63
7 [Nigella sativa oil] 0.52 -0.14 80
8 [NAC] 0.52 -0.08 185
9 [Vitamin C] 0.50 -0.02 326
10 [Fish oil etc.] 0.49 -0.03 225
11 [Quercetin] 0.48 -0.11 246
12 [CBD THC] 0.47 -0.20 152
13 [Zinc] 0.46 -0.04 290
14 [K vitamins] 0.42 -0.06 124
15 [ALA] 0.40 -0.13 102
16 [Multivitamin] 0.28 -0.08 192
17 [Pine needle tea] 0.28 -0.13 69
18 [Monolaurin] 0.27 -0.14 22
19 [Nigella sativa seed] 0.25 0.00 16
20 [Luteolin] 0.20 -0.10 30

Diet only¶

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Other diet] 1.41 0.00 34
2 [Anti inflammatory diet] 1.19 -0.02 85
3 [Glutenfree diet] 1.14 -0.03 190
4 [Low histamine diet] 1.10 -0.03 198
5 [Carnivore diet] 0.92 -0.16 25
6 [AIP diet] 0.85 -0.15 26
7 [Paleo diet] 0.74 -0.26 31
8 [Plant based diet] 0.71 -0.06 77
9 [Keto diet] 0.70 -0.27 33
10 [Vegan diet] 0.39 -0.22 41
11 [Wahls protocol] 0.18 -0.73 11

Fasting only¶

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Multiday fasting] 1.04 -0.33 27
2 [24-48 hour fasting] 0.79 -0.31 52
3 [Intermittent fasting] 0.71 -0.07 167
4 [OMAD] 0.59 -0.22 80
5 [Multiday juice fasting] 0.45 -0.45 11

Mental and alternative treatments only¶

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Brain retraining] 1.18 -0.06 62
2 [Prayer] 1.17 0.00 144
3 [Meditation] 0.94 -0.02 208
4 [EMDR] 0.66 -0.14 29
5 [Infrared sauna] 0.64 -0.18 56
6 [Red light therapy] 0.58 -0.10 59
7 [Acupuncture] 0.49 -0.28 144
8 [CBT] 0.48 -0.14 96
9 [Traditional sauna] 0.06 -0.63 35

Infusion treatments, HBOT, and immune-suppressing drugs¶

*This survey did not ask whether methylene blue was taken via IV or swallowed into the body.

WARNING: There is one anecdote of a ME/CFS patient worsening after HELP apheresis which eventually resulted in their death. The survey data may not fully capture the risk of that treatment.
Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [HELP apheresis] 1.36 -0.36 11
2 [HBOT >1.5 ATA] 1.35 -0.32 34
3 [Methylene blue] 1.25 0.00 8
4 [IVIG] 1.00 -0.33 21
5 [EBOO] 0.78 0.00 9
6 [SCIG] 0.67 0.00 3
7 [Inuspheresis] 0.67 0.00 3
8 [HBOT <=1.5 ATA] 0.67 -0.29 42
9 [Corticosteroids] 0.53 -0.40 163
10 [IV vitamins] 0.51 -0.16 93
11 [PLEX] 0.50 0.00 8
12 [Biologic] 0.50 0.00 4
13 [IV ozone] 0.45 -0.21 33
14 [DMARD] 0.20 -0.10 10
15 [Methotextrate] -0.38 -0.50 8

Anti-microbials¶

Chronic Lyme treatments such as HBOT, methylene blue, IV ozone, and monolaurin are included. Amphotericin, Canesten, Econazole, etc. are anti-fungals.

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [HBOT >1.5 ATA] 1.35 -0.32 34
2 [Methylene blue] 1.25 0.00 8
3 [Monoclonals] 1.06 -0.12 17
4 [Tamiflu] 1.00 0.00 1
5 [Plaquenil] 0.89 -0.22 36
6 [Ivermectin] 0.85 -0.13 112
7 [HBOT <=1.5 ATA] 0.67 -0.29 42
8 [Paxlovid] 0.67 -0.40 15
9 [Molnupiravir] 0.60 0.00 5
10 [Aciclovir, Famciclovir, Valtrex, Valcyte] 0.54 -0.14 56
11 [Nigella sativa capsules] 0.54 -0.03 63
12 [Amphotericin, Canesten, Econazole, Fluconazol... 0.53 -0.21 38
13 [Nigella sativa oil] 0.52 -0.14 80
14 [Alinia] 0.50 0.00 2
15 [IV ozone] 0.45 -0.21 33
16 [Monolaurin] 0.27 -0.14 22
17 [Nigella sativa seed] 0.25 0.00 16
18 [Tetracyclines, Flox antibiotics, Penicillins,... -0.06 -0.49 154

Specific antibiotics¶

'Antibiotic unknown type' = The surveyee doesn't know what antibiotic they took.

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Sulfonamides] 2.00 0.00 2
2 [Aminoglycosides] 1.50 0.00 2
3 [Antibiotic unknown type] 0.80 -0.13 15
4 [Macrolides] 0.16 -0.32 25
5 [Tetracyclines] 0.13 -0.17 30
6 [Metronidazole] 0.00 -1.00 3
7 [Cephalosporins] -0.10 -0.60 10
8 [Other antibiotic] -0.44 -0.62 16
9 [Penicillins] -0.46 -0.64 28
10 [Flox antibiotics] -0.62 -1.06 16
11 [Clindamycin] -0.75 -0.75 4
12 [Nitrofurantoin] -1.00 -1.00 3

COVID-19 treatments¶

Surveyees may have answered in an acute COVID-19 context or outside of an acute COVID-19 context.

Treatments with more than 0 data points Score Risk score # of data points (out of 474 surveyees)
1 [Monoclonals] 1.06 -0.12 17
2 [Vedicinals9] 0.93 -0.20 15
3 [Plaquenil] 0.89 -0.22 36
4 [Ivermectin] 0.85 -0.13 112
5 [Paxlovid] 0.67 -0.40 15
6 [Molnupiravir] 0.60 0.00 5
7 [Melatonin] 0.60 -0.13 209
8 [Vitamin D] 0.54 -0.03 370
9 [Tollovid] 0.40 -0.13 15

Charts¶

These charts show how surveyees reported their experiences with particular treatments. If the treatment had very few data points, they are usually grouped together with other similar treatments to provide combined data.

Anti-depressants: SSRIs, SNRIs, TCAs¶

WARNING: Some anti-depressants can lead to serious withdrawal issues and suicide. This survey data may not fully capture the risk of these types of drugs.

SSRIs (Selective Serotonin Reuptake Inhibitors)¶

Fluvoxamine (Luvox)¶

Popularity data
PostVac            8.4%   30/356 patients
LC                 14.9%   13/87 patients
MECFS              6.5%   2/31 patients

SNRIs (Serotonin–Norepinephrine Reuptake Inhibitors)¶

Cymbalta (Duloxetine)¶

Popularity data
PostVac            5.9%   21/356 patients
LC                 3.4%   3/87 patients
MECFS              19.4%   6/31 patients

Effexor (Venlafaxine)¶

Popularity data
PostVac            1.7%   6/356 patients
LC                 1.1%   1/87 patients
MECFS              19.4%   6/31 patients

TCAs (Tricyclic Antidepressants)¶

  • Amitriptyline / Elavil
  • Doxepin / Sinequan, Quitaxon, Adapin, Triadapin, Aponal, and others
  • Nortriptyline / Pamelor
  • Clomipramine / Anafranil

Elavil (Amitriptyline)¶

Popularity data
PostVac            9.3%   33/356 patients
LC                 12.6%   11/87 patients
MECFS              6.5%   2/31 patients

Doxepin (Sinequan, Quitaxon, Adapin, Triadapin, Aponal)¶

Popularity data
PostVac            1.1%   4/356 patients
LC                 2.3%   2/87 patients
MECFS              3.2%   1/31 patients

Other anti-depressants and anti-psychotics¶

Tylenol, other NSAIDs, prescription blood thinners¶

Tylenol (paracetamol)¶

Popularity data
PostVac            39.3%   140/356 patients
LC                 48.3%   42/87 patients
MECFS              38.7%   12/31 patients

Aspirin (acetylsalicylic acid)¶

Popularity data
PostVac            42.4%   151/356 patients
LC                 51.7%   45/87 patients
MECFS              41.9%   13/31 patients

Advil (ibuprofen)¶

Popularity data
PostVac            47.2%   168/356 patients
LC                 49.4%   43/87 patients
MECFS              48.4%   15/31 patients

Other NSAID (Nonsteroidal anti-inflammatory drug)¶

Popularity data
PostVac            25.8%   92/356 patients
LC                 24.1%   21/87 patients
MECFS              45.2%   14/31 patients

Prescription blood thinners¶

Heparin, Eliquis / Apixiban, Clopidogrel, Xarelto, Sulodexide

Popularity data
PostVac            3.4%   12/356 patients
LC                 4.6%   4/87 patients
MECFS              0.0%   0/31 patients

Popularity data
PostVac            2.0%   7/356 patients
LC                 6.9%   6/87 patients
MECFS              3.2%   1/31 patients

Popularity data
PostVac            2.8%   10/356 patients
LC                 14.9%   13/87 patients
MECFS              6.5%   2/31 patients

IVIG, SCIG, and other infusion-based treatment¶

IVIG (Intravenous Immunoglobulin)¶

Popularity data
PostVac            4.8%   17/356 patients
LC                 2.3%   2/87 patients
MECFS              6.5%   2/31 patients

SCIG (subcutaneous immunoglobulin)¶

Popularity data
PostVac            0.8%   3/356 patients
LC                 0.0%   0/87 patients
MECFS              0.0%   0/31 patients

PLEX / TPE (therapeutic plasma exchange) / Plasmapheresis¶

Data on PLEX is also available from the Risk Factors Survey:

  • Survey results slide 22: http://sickandabandoned.com/wp-content/uploads/2023/06/SAA-Risk-Factors-Survey-FULL.pdf
  • 1 mild improvement, 1 significant worsening
Popularity data
PostVac            1.7%   6/356 patients
LC                 1.1%   1/87 patients
MECFS              3.2%   1/31 patients

HELP apheresis (heparin-induced extracorporeal low-density lipoprotein precipitation)¶

WARNING: There is one anecdote of a ME/CFS patient worsening after HELP apheresis which eventually resulted in their death. The survey data may not fully capture the risk of that treatment. 
Popularity data
PostVac            0.6%   2/356 patients
LC                 9.2%   8/87 patients
MECFS              3.2%   1/31 patients

Inuspheresis¶

Popularity data
PostVac            0.6%   2/356 patients
LC                 1.1%   1/87 patients
MECFS              0.0%   0/31 patients

IV ozone (intravenous ozone)¶

Popularity data
PostVac            7.0%   25/356 patients
LC                 5.7%   5/87 patients
MECFS              9.7%   3/31 patients

IV vitamins (intravenous vitamins) and IV vitamin C¶

Popularity data
PostVac            18.0%   64/356 patients
LC                 23.0%   20/87 patients
MECFS              29.0%   9/31 patients

EBOO (extracorporeal blood oxygenation and ozonation)¶

Popularity data
PostVac            2.0%   7/356 patients
LC                 1.1%   1/87 patients
MECFS              3.2%   1/31 patients

Methylene blue¶

Popularity data
PostVac            1.7%   6/356 patients
LC                 1.1%   1/87 patients
MECFS              3.2%   1/31 patients

HBOT (Hyperbaric Oxygen Therapy)¶

HBOT <=1.5 ATA, HBOT >1.5 ATA

Popularity data
PostVac            7.6%   27/356 patients
LC                 14.9%   13/87 patients
MECFS              6.5%   2/31 patients

Popularity data
PostVac            6.2%   22/356 patients
LC                 13.8%   12/87 patients
MECFS              0.0%   0/31 patients

Immune suppressing drugs¶

Corticosteroids (e.g. prednisone, methylprednisone, dexamethasone, etc.)¶

Popularity data
PostVac            36.5%   130/356 patients
LC                 32.2%   28/87 patients
MECFS              16.1%   5/31 patients

Do people with lower severity respond better to corticosteroids?
Current severity 4 or less | Average (mean) score: 0.77 | n =  60
Current severity 5 or more | Average (mean) score: 0.38 | n =  79

Methotextrate¶

Popularity data
PostVac            1.7%   6/356 patients
LC                 0.0%   0/87 patients
MECFS              6.5%   2/31 patients

Biologic, e.g. Humira, Enbrel, rituximab¶

Popularity data
PostVac            1.1%   4/356 patients
LC                 0.0%   0/87 patients
MECFS              0.0%   0/31 patients

Other DMARD (Disease-Modifying Anti-Rheumatic Drug)¶

Popularity data
PostVac            2.2%   8/356 patients
LC                 1.1%   1/87 patients
MECFS              3.2%   1/31 patients

Traditional anti-microbials¶

Anti-parasitic / Anti-helmintic¶

Ivermectin (Stromectol, Soolantra)¶

Popularity data
PostVac            22.8%   81/356 patients
LC                 31.0%   27/87 patients
MECFS              12.9%   4/31 patients

Hydroxychloroquine (Plaquenil)¶

Popularity data
PostVac            7.3%   26/356 patients
LC                 10.3%   9/87 patients
MECFS              3.2%   1/31 patients

Alinia (Nitazoxanide)¶

Popularity data
PostVac            0.0%   0/356 patients
LC                 2.3%   2/87 patients
MECFS              0.0%   0/31 patients

Antibiotics, e.g. tetracyclines, macrolides, fluoroquinolones ('flox'), doxycycline, etc.¶

Warning: The 'flox' antibiotics or fluoroquinolones have support groups for people injured by them. Please do your research before taking them, especially when there are many alternatives available.

Antivirals - Aciclovir, Famiciclovir, Valtrex (valacyclovir), Valcyte (valganciclovir)¶

Valtrex (valacyclovir / valaciclovir)¶

Popularity data
PostVac            4.5%   16/356 patients
LC                 10.3%   9/87 patients
MECFS              16.1%   5/31 patients

Valcyte (valganciclovir / valgancyclovir)¶

Popularity data
PostVac            0.0%   0/356 patients
LC                 0.0%   0/87 patients
MECFS              3.2%   1/31 patients

Aciclovir / acyclovir¶

Popularity data
PostVac            4.2%   15/356 patients
LC                 5.7%   5/87 patients
MECFS              0.0%   0/31 patients

Famciclovir / Famvir / Famyclovir¶

Popularity data
PostVac            0.6%   2/356 patients
LC                 2.3%   2/87 patients
MECFS              3.2%   1/31 patients

Ribavirin, Tamiflu¶

(Not enough data points for Ribavirin or Tamiflu)

Used ribavirin: 0
Used Tamiflu: 1

Anti-fungal: Fluconazole, Amphotericin, Canesten, Econazole, Ketoconazole, Miconazole, Nystatin, Terbinafine, Other antifungal¶

COVID-19 treatments¶

Paxlovid (Nirmatrelvir / ritonavir)¶

Popularity data
PostVac            1.4%   5/356 patients
LC                 11.5%   10/87 patients
MECFS              0.0%   0/31 patients

Molnupiravir¶

Popularity data
PostVac            0.6%   2/356 patients
LC                 3.4%   3/87 patients
MECFS              0.0%   0/31 patients

Monoclonal antibodies (monoclonals)¶

Popularity data
PostVac            3.7%   13/356 patients
LC                 3.4%   3/87 patients
MECFS              3.2%   1/31 patients

Tollovid¶

Popularity data
PostVac            1.4%   5/356 patients
LC                 11.5%   10/87 patients
MECFS              0.0%   0/31 patients

Vedicinals9¶

Popularity data
PostVac            1.4%   5/356 patients
LC                 11.5%   10/87 patients
MECFS              0.0%   0/31 patients

Prescription drugs¶

Opiates, e.g. fentanyl, codeine¶

Popularity data
PostVac            9.8%   35/356 patients
LC                 9.2%   8/87 patients
MECFS              9.7%   3/31 patients

Other pain relievers, e.g. gabapentin¶

WARNING: Gabapentin can lead to suicide. The survey data may not fully capture the risk of these types of drugs. 
Popularity data
PostVac            20.8%   74/356 patients
LC                 16.1%   14/87 patients
MECFS              9.7%   3/31 patients

Benzodiazepines e.g. Xanax, Ativan, clonazepam¶

WARNING: Benzodiazepines can lead to serious withdrawal issues and suicide. The survey data may not fully capture the risk of these types of drugs. 
Popularity data
PostVac            20.2%   72/356 patients
LC                 18.4%   16/87 patients
MECFS              25.8%   8/31 patients

Ambien (zolpidem)¶

Popularity data
PostVac            3.9%   14/356 patients
LC                 8.0%   7/87 patients
MECFS              3.2%   1/31 patients

Antiseizure (anti-seizure), e.g. topiramate / Topamax, lamotrigine / Lamictal¶

WARNING: Some anti-seizure drugs increase the risk of suicidal ideation. The survey data may not fully capture the risk of these types of drugs. 
Popularity data
PostVac            5.1%   18/356 patients
LC                 5.7%   5/87 patients
MECFS              3.2%   1/31 patients

Beta blockers¶

Popularity data
PostVac            25.3%   90/356 patients
LC                 28.7%   25/87 patients
MECFS              22.6%   7/31 patients

Colchicine¶

Popularity data
PostVac            12.9%   46/356 patients
LC                 6.9%   6/87 patients
MECFS              3.2%   1/31 patients

Statins (including red yeast rice)¶

Maraviroc (Selzentry / Celsentri)¶

Popularity data
PostVac            2.5%   9/356 patients
LC                 4.6%   4/87 patients
MECFS              0.0%   0/31 patients

Anti-histamines¶

Acrivastine (Benadryl Allergy Relief in the UK)¶

Popularity data
PostVac            13.5%   48/356 patients
LC                 10.3%   9/87 patients
MECFS              6.5%   2/31 patients

Cetirizine (Zyrtec)¶

Popularity data
PostVac            30.1%   107/356 patients
LC                 47.1%   41/87 patients
MECFS              29.0%   9/31 patients

Diphenhydramine / Benadryl¶

Popularity data
PostVac            15.4%   55/356 patients
LC                 18.4%   16/87 patients
MECFS              12.9%   4/31 patients

Famotidine (Pepcid)¶

Popularity data
PostVac            26.7%   95/356 patients
LC                 43.7%   38/87 patients
MECFS              12.9%   4/31 patients

Fexofenadine (Allegra)¶

Popularity data
PostVac            13.8%   49/356 patients
LC                 21.8%   19/87 patients
MECFS              16.1%   5/31 patients

Loratadine (Claritin)¶

Popularity data
PostVac            28.1%   100/356 patients
LC                 31.0%   27/87 patients
MECFS              29.0%   9/31 patients

Ketotifen (Zaditor)¶

Popularity data
PostVac            2.8%   10/356 patients
LC                 5.7%   5/87 patients
MECFS              9.7%   3/31 patients

Levocetirizine (Xyzal)¶

Popularity data
PostVac            2.2%   8/356 patients
LC                 3.4%   3/87 patients
MECFS              3.2%   1/31 patients

DAO enzymes (Diamine oxidase enzymes)¶

Popularity data
PostVac            10.7%   38/356 patients
LC                 11.5%   10/87 patients
MECFS              9.7%   3/31 patients

Other anti-histamines¶

Note: Some anti-histamine drugs (e.g. Doxepin, Seroquel) are listed under anti-depressants above.

Desloratadine (Clarinex)¶

Popularity data
PostVac            3.7%   13/356 patients
LC                 3.4%   3/87 patients
MECFS              9.7%   3/31 patients

Cromolyn / Cromoglicic acid¶

Popularity data
PostVac            3.7%   13/356 patients
LC                 5.7%   5/87 patients
MECFS              6.5%   2/31 patients

LDN / Low dose naltrexone¶

Popularity data
PostVac            13.5%   48/356 patients
LC                 24.1%   21/87 patients
MECFS              35.5%   11/31 patients

Other anti-histamines e.g. Hydroxyzine, Bilastine, etc.¶

Supplements and over-the-counter drugs¶

Nigella sativa oil. The nigella sative plant is used to produce 'black seed oil'¶

This survey had three categories for the nigella sativa plant: oil, capsules (e.g. gelcaps, vegcaps), and the seed of the plant.

Popularity data
PostVac            18.3%   65/356 patients
LC                 10.3%   9/87 patients
MECFS              19.4%   6/31 patients

Popularity data
PostVac            13.2%   47/356 patients
LC                 11.5%   10/87 patients
MECFS              19.4%   6/31 patients

Popularity data
PostVac            3.1%   11/356 patients
LC                 2.3%   2/87 patients
MECFS              9.7%   3/31 patients

ALA / Alpha-lipoic acid¶

Popularity data
PostVac            23.9%   85/356 patients
LC                 9.2%   8/87 patients
MECFS              29.0%   9/31 patients

CBD THC | CBD (cannabidiol) or THC¶

Popularity data
PostVac            31.2%   111/356 patients
LC                 34.5%   30/87 patients
MECFS              35.5%   11/31 patients

Fish oil etc. | Fish oil, krill oil, omega 3/6¶

Popularity data
PostVac            45.2%   161/356 patients
LC                 48.3%   42/87 patients
MECFS              71.0%   22/31 patients

Luteolin¶

Popularity data
PostVac            4.5%   16/356 patients
LC                 10.3%   9/87 patients
MECFS              16.1%   5/31 patients

Melatonin¶

Popularity data
PostVac            40.7%   145/356 patients
LC                 51.7%   45/87 patients
MECFS              61.3%   19/31 patients

Monolaurin (Lauricidin)¶

Popularity data
PostVac            3.1%   11/356 patients
LC                 6.9%   6/87 patients
MECFS              16.1%   5/31 patients

NAC (N-Acetyl Cysteine)¶

Popularity data
PostVac            38.8%   138/356 patients
LC                 40.2%   35/87 patients
MECFS              38.7%   12/31 patients

Pine needle tea¶

Popularity data
PostVac            17.7%   63/356 patients
LC                 4.6%   4/87 patients
MECFS              6.5%   2/31 patients

Probiotics prebiotics¶

Popularity data
PostVac            44.7%   159/356 patients
LC                 64.4%   56/87 patients
MECFS              54.8%   17/31 patients

Quercetin¶

Popularity data
PostVac            50.0%   178/356 patients
LC                 59.8%   52/87 patients
MECFS              51.6%   16/31 patients

B vitamins, e.g. B6, B12¶

Popularity data
PostVac            67.7%   241/356 patients
LC                 71.3%   62/87 patients
MECFS              80.6%   25/31 patients

Vitamin C¶

*Intravenous vitamin C is listed elsewhere as part of "IV vitamins".

Popularity data
PostVac            66.9%   238/356 patients
LC                 73.6%   64/87 patients
MECFS              77.4%   24/31 patients

Vitamin D¶

Popularity data
PostVac            77.0%   274/356 patients
LC                 82.8%   72/87 patients
MECFS              77.4%   24/31 patients

K vitamins¶

Popularity data
PostVac            26.4%   94/356 patients
LC                 20.7%   18/87 patients
MECFS              38.7%   12/31 patients

Multivitamin / Multi-vitamin¶

Popularity data
PostVac            38.8%   138/356 patients
LC                 46.0%   40/87 patients
MECFS              45.2%   14/31 patients

Magnesium¶

Popularity data
PostVac            67.7%   241/356 patients
LC                 73.6%   64/87 patients
MECFS              80.6%   25/31 patients

Zinc¶

Popularity data
PostVac            60.7%   216/356 patients
LC                 64.4%   56/87 patients
MECFS              58.1%   18/31 patients

Diets¶

Low histamine diet¶

Popularity data
PostVac            41.9%   149/356 patients
LC                 47.1%   41/87 patients
MECFS              25.8%   8/31 patients

Glutenfree diet / Gluten-free diet¶

Popularity data
PostVac            40.2%   143/356 patients
LC                 40.2%   35/87 patients
MECFS              38.7%   12/31 patients

Plant based diet | Vegetarian or (whole foods) plant-based diet¶

Popularity data
PostVac            15.4%   55/356 patients
LC                 16.1%   14/87 patients
MECFS              25.8%   8/31 patients

Vegan diet¶

Popularity data
PostVac            8.1%   29/356 patients
LC                 10.3%   9/87 patients
MECFS              9.7%   3/31 patients

Autoimmune protocol diet (AIP diet)¶

Popularity data
PostVac            4.2%   15/356 patients
LC                 9.2%   8/87 patients
MECFS              9.7%   3/31 patients

Wahls protocol diet¶

Popularity data
PostVac            2.8%   10/356 patients
LC                 0.0%   0/87 patients
MECFS              3.2%   1/31 patients

Carnivore diet or meat-only diet¶

Popularity data
PostVac            4.8%   17/356 patients
LC                 4.6%   4/87 patients
MECFS              12.9%   4/31 patients

Keto diet / ketogenic diet¶

Popularity data
PostVac            6.7%   24/356 patients
LC                 4.6%   4/87 patients
MECFS              16.1%   5/31 patients

Anti inflammatory diet / Anti-inflammatory diet¶

Popularity data
PostVac            18.0%   64/356 patients
LC                 18.4%   16/87 patients
MECFS              16.1%   5/31 patients

Other diet¶

Popularity data
PostVac            5.6%   20/356 patients
LC                 5.7%   5/87 patients
MECFS              29.0%   9/31 patients

Fasting¶

OMAD / One meal a day¶

Popularity data
PostVac            15.4%   55/356 patients
LC                 20.7%   18/87 patients
MECFS              22.6%   7/31 patients

Intermittent fasting, more than 1 meal a day¶

Popularity data
PostVac            36.0%   128/356 patients
LC                 26.4%   23/87 patients
MECFS              51.6%   16/31 patients

24-48 hour fasting¶

Popularity data
PostVac            10.7%   38/356 patients
LC                 9.2%   8/87 patients
MECFS              19.4%   6/31 patients

Multiday fasting | >48 hour fasting - dry or only water allowed¶

Popularity data
PostVac            5.6%   20/356 patients
LC                 3.4%   3/87 patients
MECFS              12.9%   4/31 patients

Multiday juice fasting | >48 hour fasting - teas, cleanses, juices, etc. allowed¶

Popularity data
PostVac            2.0%   7/356 patients
LC                 2.3%   2/87 patients
MECFS              6.5%   2/31 patients

Exercise or pacing strategies¶

Intense exercise (with sweating)¶

Popularity data
PostVac            44.9%   160/356 patients
LC                 46.0%   40/87 patients
MECFS              48.4%   15/31 patients

Light exercise (no sweating)¶

Popularity data
PostVac            62.6%   223/356 patients
LC                 67.8%   59/87 patients
MECFS              77.4%   24/31 patients

Graded exercise therapy¶

Popularity data
PostVac            13.8%   49/356 patients
LC                 26.4%   23/87 patients
MECFS              19.4%   6/31 patients

Avoiding exercise¶

Popularity data
PostVac            55.1%   196/356 patients
LC                 71.3%   62/87 patients
MECFS              77.4%   24/31 patients

Pacing strategies, e.g. spoon theory¶

Popularity data
PostVac            28.4%   101/356 patients
LC                 66.7%   58/87 patients
MECFS              64.5%   20/31 patients

Alternative treatments, mental treatments, other modalities¶

CBT / Cognitive Behavioral Therapy¶

Popularity data
PostVac            18.5%   66/356 patients
LC                 23.0%   20/87 patients
MECFS              32.3%   10/31 patients

Prayer¶

Popularity data
PostVac            32.3%   115/356 patients
LC                 24.1%   21/87 patients
MECFS              25.8%   8/31 patients

Meditation¶

Popularity data
PostVac            41.0%   146/356 patients
LC                 54.0%   47/87 patients
MECFS              48.4%   15/31 patients

Eye Movement Desensitization and Reprocessing (EMDR)¶

Popularity data
PostVac            5.3%   19/356 patients
LC                 6.9%   6/87 patients
MECFS              12.9%   4/31 patients

Brain retraining¶

Popularity data
PostVac            11.0%   39/356 patients
LC                 17.2%   15/87 patients
MECFS              25.8%   8/31 patients

Acupuncture¶

Popularity data
PostVac            32.0%   114/356 patients
LC                 24.1%   21/87 patients
MECFS              29.0%   9/31 patients

Traditional sauna¶

*Note: Some people lose their ability to tolerate heat (e.g. hot showers) after they develop chronic illness. What works for somebody else may not be appropriate for you.

Popularity data
PostVac            7.6%   27/356 patients
LC                 2.3%   2/87 patients
MECFS              19.4%   6/31 patients

Infrared sauna¶

Popularity data
PostVac            11.0%   39/356 patients
LC                 6.9%   6/87 patients
MECFS              35.5%   11/31 patients

Red light therapy¶

Popularity data
PostVac            13.5%   48/356 patients
LC                 6.9%   6/87 patients
MECFS              16.1%   5/31 patients

Demographics¶

Number of treatments tried¶

Number of treatments tried versus biological sex:
Female:  21.1
Male:    21.5

Age¶

Age distribution in Long COVID surveyees

Age distribution in COVID vaccine injured surveyees

Biological sex¶

71.9% of surveyees indicated that they were biologically female.

Walking ability¶

3.0    115
0.0     84
2.0     59
1.0     58
Name: Employment severity current, dtype: int64

Ability to work¶

The severity scale is as follows:

  • 3 = 'Not able to work my last job at all.'
  • 2 = 'Able to work my last job only part-time.'
  • 1 = 'Able to work my last job full-time, but only with accommodations (e.g. working at home/remotely).'
  • 0 = 'Able to work my last job full-time.'

Symptoms, rated on a scale of 0 to 4 (Doesn't bother me to worst suffering imaginable)¶

  • -1 = Don't have that symptom. That corresponds to the first column.
  • Otherwise, symptoms are rated on a scale of 0-4. The column on the right consists of those who reported the highest severity possible.

Surveyees reported 'peak' severity from the worst month of illness.

Symptoms versus treatment responses¶

The survey asked respondents to rate their symptoms on a Likert scale.

  • 0 = Symptoms do not bother me
  • 4 = Worst suffering imaginable

These analyses look at possible connections between symptoms and treatment responses.

Food intolerances¶

Those with severe food intolerances are more likely to report significant improvement from a low-histamine or gluten-free diet.

Food intolerances 2 or less | Average (mean) score: 0.63 | n =  97
Food intolerances 3-4 | Average (mean) score: 1.54 | n =  96

Food intolerances 2 or less | Average (mean) score: 0.78 | n =  95
Food intolerances 3-4 | Average (mean) score: 1.5 | n =  92

Food intolerances versus anti-histamines

Food intolerances 2 or less | Average (mean) score: 0.48 | n =  93
Food intolerances 3-4 | Average (mean) score: 1.18 | n =  60

It is thought that DAO enzymes will benefit those with a strong histamine intolerance. However, reported outcomes do not seem to correlate heavily with self-reported food intolerance.