Patient Experiences Survey¶


The Patient Experiences Survey can be found HERE.

The survey takes around 5-10 minutes.

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 2023-12-27.

Tutorial for understanding this page¶

Please visit https://forum.sickandabandoned.com/t/has-anybody-tried-heres-how-you-can-get-answers-to-that-question-fast/228

It is highly recommended that you start there.

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.

Ranking of treatments surveyed.

While the chart above is limited to the most popular treatments, the tables below have data on all 235 treatments. Some of them are grouped together.

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Rupatadine] 3.00 0.00 1
2 [Avacen] 3.00 0.00 1
3 [Wet cupping] 2.00 0.00 2
4 [Inuspheresis] 2.00 0.00 2
5 [Urotherapy] 2.00 0.00 3
6 [Stem cells] 1.67 0.00 6
7 [Other diet] 1.51 0.00 55
8 [PLEX] 1.50 0.00 2
9 [Other brain retraining] 1.43 0.00 54
10 [Other chelation] 1.38 0.00 13
11 [Ayurveda] 1.36 -0.09 11
12 [Photobiomodulation] 1.36 -0.09 11
13 [Maraviroc] 1.36 0.00 11
14 [Rapamycin] 1.33 0.00 3
15 [Doxylamine] 1.33 0.00 6
16 [ASEA Redox] 1.33 -0.33 9
17 [Cardio Miracle] 1.33 0.00 6
18 [Paleo diet] 1.32 0.00 19
19 [Pacing strategies] 1.28 -0.06 239
20 [Prayer] 1.26 -0.01 157
21 [Low histamine diet] 1.25 0.00 200
22 [Wahls protocol] 1.25 -0.25 12
23 [Alinia] 1.20 0.00 5
24 [Benzodiazepines] 1.15 -0.12 144
25 [Glutenfree diet] 1.14 -0.01 187
26 [AIP diet] 1.14 -0.11 36
27 [IVIG, SCIG] 1.13 0.00 15
28 [Chlorine dioxide] 1.06 0.00 16
29 [Other antihistamines] 1.06 0.00 34
30 [Water and salt] 1.04 -0.02 272
31 [Seldane] 1.00 0.00 1
32 [Mizolastine] 1.00 0.00 1
33 [Quifenadine] 1.00 0.00 1
34 [Anti inflammatory diet] 1.00 -0.05 87
35 [HBOT <=1.5 ATA, HBOT >1.5 ATA] 1.00 -0.22 51
36 [Guanfacine] 1.00 -0.27 22
37 [EBOO] 1.00 0.00 7
38 [HCG] 1.00 0.00 1
39 [Ivermectin] 1.00 -0.14 129
40 [Monoclonals] 1.00 0.00 11
41 [Drinking water] 0.96 0.00 152
42 [Meditation] 0.96 -0.03 250
43 [Avoiding exercise] 0.95 -0.14 306
44 [Other muscle relaxers] 0.95 -0.17 64
45 [Clarinex] 0.95 -0.21 19
46 [Opiates] 0.93 -0.27 59
47 [Keto diet] 0.92 -0.21 61
48 [LDN] 0.91 -0.26 140
49 [Other TCM] 0.90 -0.15 39
50 [Diazepam] 0.89 -0.27 64
Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
51 [VNS] 0.89 -0.09 108
52 [Osteopathy] 0.88 -0.29 42
53 [HELP apheresis] 0.88 -0.50 8
54 [Magnesium] 0.87 -0.05 366
55 [Quantum healing] 0.87 0.00 15
56 [Colchicine] 0.84 -0.22 32
57 [Activated charcoal] 0.83 -0.06 35
58 [Ambien] 0.83 -0.23 30
59 [Time] 0.83 -0.35 465
60 [Multiday wet fasting] 0.82 -0.26 38
61 [EMDR] 0.80 -0.11 55
62 [Serrapeptase] 0.79 -0.05 112
63 [IV vitamins] 0.79 -0.05 56
64 [TWC detox] 0.78 0.00 9
65 [Intermittent fasting] 0.77 -0.08 212
66 [Lumbrokinase] 0.75 -0.02 52
67 [Plaquenil] 0.74 -0.29 42
68 [Cromolyn] 0.73 -0.27 22
69 [Dry cupping] 0.73 -0.08 52
70 [Plant based diet, Vegan diet] 0.73 -0.15 130
71 [IV vitamin C] 0.72 -0.08 39
72 [Carnivore diet] 0.72 -0.16 32
73 [NIBS] 0.71 -0.14 14
74 [Statins, Red yeast rice] 0.70 -0.15 61
75 [Psychedelic mushrooms] 0.70 -0.21 47
76 [St. John's Wort] 0.70 -0.17 23
77 [Oil of oregano] 0.70 -0.05 56
78 [Methylene blue] 0.70 -0.07 27
79 [Hydroxyzine] 0.69 -0.22 45
80 [Tollovid] 0.67 -0.11 9
81 [Root wellness] 0.67 -0.11 9
82 [Nigella sativa oil] 0.67 -0.05 66
83 [Zeolite] 0.67 -0.05 42
84 [Beta blockers] 0.66 -0.37 136
85 [Acupuncture] 0.66 -0.21 165
86 [IV ozone] 0.65 -0.17 23
87 [Red light therapy] 0.65 -0.14 78
88 [Compression garments] 0.65 -0.10 161
89 [Nattokinase] 0.64 -0.12 223
90 [DNRS] 0.64 -0.21 14
91 [Mestinon] 0.63 -0.47 19
92 [Zyrtec] 0.63 -0.11 187
93 [Probiotics prebiotics] 0.63 -0.09 266
94 [EDTA] 0.62 -0.12 8
95 [Cat's claw] 0.61 -0.13 23
96 [Molnupiravir] 0.60 0.00 5
97 [Glutathione] 0.60 -0.07 151
98 [Wim Hof with cold] 0.59 -0.20 56
99 [Xyzal] 0.59 -0.41 34
100 [Aciclovir, Famciclovir, Valtrex, Valcyte] 0.59 -0.09 75
Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
101 [B vitamins] 0.58 -0.12 353
102 [NAC] 0.56 -0.14 243
103 [Vitamin D] 0.56 -0.05 388
104 [CBT] 0.54 -0.09 142
105 [Quercetin] 0.54 -0.05 243
106 [Bentonite clay] 0.53 -0.06 32
107 [TRT] 0.53 -0.21 19
108 [Melatonin] 0.53 -0.18 236
109 [Sleeping with head of bed elevated] 0.52 -0.13 134
110 [Curcumin] 0.52 -0.07 283
111 [Resveratrol] 0.52 -0.03 126
112 [Patches] 0.52 -0.29 52
113 [Zinc] 0.52 -0.06 273
114 [Corticosteroids] 0.52 -0.48 147
115 [CoQ10] 0.51 -0.04 214
116 [CBD without THC] 0.51 -0.08 145
117 [Heparin, Eliquis, Clopidogrel, Xarelto, Sulod... 0.51 -0.30 70
118 [Amphotericin, Canesten, Econazole, Fluconazol... 0.51 -0.27 101
119 [Homeopathy] 0.51 -0.26 70
120 [Ebastine] 0.50 0.00 2
121 [Fish oil etc.] 0.50 -0.02 267
122 [Favipiravir] 0.50 0.00 2
123 [Immunoadsorption] 0.50 0.00 2
124 [Lion's mane] 0.49 -0.16 106
125 [Claritin] 0.49 -0.10 152
126 [Lavender] 0.48 -0.08 52
127 [CBD with THC] 0.48 -0.36 159
128 [ALA] 0.48 -0.06 120
129 [Nigella sativa capsules] 0.48 0.00 62
130 [Vitamin C] 0.47 -0.05 318
131 [Chiropractic] 0.46 -0.29 89
132 [SGB] 0.46 0.00 13
133 [Pepcid] 0.46 -0.24 157
134 [Gupta program] 0.46 0.00 13
135 [Multiday juice fasting] 0.45 -0.35 20
136 [OMAD] 0.44 -0.24 124
137 [K vitamins] 0.44 -0.11 142
138 [Dandelion] 0.43 -0.05 96
139 [Rife] 0.43 -0.36 14
140 [24-48 hour fasting] 0.43 -0.42 89
141 [Other NSAID] 0.43 -0.22 171
142 [Infrared sauna] 0.41 -0.40 58
143 [Acrivastine] 0.40 -0.19 47
144 [DAO] 0.39 -0.15 54
145 [NADH] 0.39 -0.13 84
146 [Ketotifen] 0.39 -0.46 28
147 [Vedicinals9] 0.38 -0.38 8
148 [Allegra] 0.37 -0.12 78
149 [Aspirin] 0.37 -0.12 227
150 [Other pain relievers] 0.36 -0.36 56
Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
151 [Benadryl] 0.35 -0.25 112
152 [Ashwagandha] 0.34 -0.19 139
153 [Multivitamin] 0.34 -0.08 228
154 [Wim Hof without cold] 0.33 -0.31 36
155 [Monolaurin] 0.32 -0.08 37
156 [Advil] 0.31 -0.17 254
157 [Paxlovid] 0.29 -0.38 34
158 [Traditional sauna] 0.27 -0.41 37
159 [Tylenol] 0.26 -0.08 222
160 [Lightning process] 0.25 -0.75 4
161 [Pine needle tea] 0.23 -0.13 61
162 [Tetracyclines, Fluoroquinolones, Penicillins,... 0.21 -0.55 220
163 [Multiday dry fasting] 0.21 -0.79 14
164 [Montekulast] 0.19 -0.28 47
165 [Augmented NAC] 0.19 -0.23 79
166 [Other nicotine] 0.18 -0.32 28
167 [Abilify] 0.15 -0.30 20
168 [Antiseizure] 0.14 -0.45 49
169 [Spermidine] 0.09 -0.09 32
170 [Nigella sativa seed] 0.00 -0.10 10
171 [Astemizole] 0.00 0.00 1
172 [Kangen water] 0.00 0.00 3
173 [DTPA] 0.00 0.00 2
174 [Methotextrate, Biologic, DMARD] -0.03 -0.64 33
175 [Metformin] -0.07 -0.41 29
176 [Vaping] -0.09 -0.31 35
177 [Celexa, Lexapro, Fluvoxamine, Prozac, Paxil, ... -0.17 -0.70 264
178 [Elavil, Doxepin, Pamelor, Clomipramine, Clomi... -0.18 -0.60 84
179 [Cigarettes] -0.18 -0.28 39
180 [Remeron, Seroquel, Wellbutrin] -0.31 -0.72 126
181 [Light exercise] -0.37 -0.91 331
182 [Biocidin] -0.38 -0.50 8
183 [Frequency wand] -0.62 -1.25 8
184 [Bilastine] -0.67 -1.00 3
185 [Graded exercise therapy] -0.71 -1.19 118
186 [Semprex D] -1.50 -1.50 2
187 [Intense exercise] -1.76 -2.07 243

Exercise and activity-related only¶

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Pacing strategies] 1.28 -0.06 239
2 [Avoiding exercise] 0.95 -0.14 306
3 [Light exercise] -0.37 -0.91 331
4 [Graded exercise therapy] -0.71 -1.19 118
5 [Intense exercise] -1.76 -2.07 243

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. See https://forum.sickandabandoned.com/t/paper-on-help-apheresis-makes-extraordinary-claims-about-patient-recovery-beate-jaeger-and-colleagues/179
Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [HELP apheresis] 0.88 -0.50 8
2 [Clopidogrel] 0.86 -0.18 22
3 [Serrapeptase] 0.79 -0.05 112
4 [Lumbrokinase] 0.75 -0.02 52
5 [Xarelto] 0.67 -0.44 9
6 [Nattokinase] 0.64 -0.12 223
7 [Heparin] 0.53 -0.35 17
8 [Other NSAID] 0.43 -0.22 171
9 [Aspirin] 0.37 -0.12 227
10 [Advil] 0.31 -0.17 254
11 [Tylenol] 0.26 -0.08 222
12 [Eliquis] 0.11 -0.37 19
13 [Sulodexide] 0.00 0.00 3

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. See https://forum.sickandabandoned.com/t/paper-on-help-apheresis-makes-extraordinary-claims-about-patient-recovery-beate-jaeger-and-colleagues/179
Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [HBOT >1.5 ATA] 1.52 -0.16 25
2 [PLEX] 1.50 0.00 2
3 [Maraviroc] 1.36 0.00 11
4 [Pacing strategies] 1.28 -0.06 239
5 [Low histamine diet] 1.25 0.00 200
6 [Benzodiazepines] 1.15 -0.12 144
7 [IVIG] 1.00 0.00 13
8 [HELP apheresis] 0.88 -0.50 8
9 [Clopidogrel] 0.86 -0.18 22
10 [Multiday wet fasting] 0.82 -0.26 38
11 [Serrapeptase] 0.79 -0.05 112
12 [Intermittent fasting] 0.77 -0.08 212
13 [Lumbrokinase] 0.75 -0.02 52
14 [Statins, Red yeast rice] 0.70 -0.15 61
15 [Xarelto] 0.67 -0.44 9
16 [Nattokinase] 0.64 -0.12 223
17 [Zyrtec] 0.63 -0.11 187
18 [Quercetin] 0.54 -0.05 243
19 [Heparin] 0.53 -0.35 17
20 [Corticosteroids] 0.52 -0.48 147
21 [HBOT <=1.5 ATA] 0.50 -0.27 26
22 [Pepcid] 0.46 -0.24 157
23 [OMAD] 0.44 -0.24 124
24 [24-48 hour fasting] 0.43 -0.42 89
25 [Other NSAID] 0.43 -0.22 171
26 [Aspirin] 0.37 -0.12 227
27 [Advil] 0.31 -0.17 254
28 [Multiday dry fasting] 0.21 -0.79 14
29 [Eliquis] 0.11 -0.37 19
30 [Sulodexide] 0.00 0.00 3

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 525 surveyees)
1 [Maraviroc] 1.36 0.00 11
2 [Other muscle relaxers] 0.95 -0.17 64
3 [Opiates] 0.93 -0.27 59
4 [Diazepam] 0.89 -0.27 64
5 [Colchicine] 0.84 -0.22 32
6 [Statins, Red yeast rice] 0.70 -0.15 61
7 [Beta blockers] 0.66 -0.37 136
8 [Other pain relievers] 0.36 -0.36 56
9 [Abilify] 0.15 -0.30 20
10 [Antiseizure] 0.14 -0.45 49

Anti-depressants¶

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Celexa, Lexapro, Fluvoxamine, Prozac, Paxil, ... -0.08 -0.59 189
2 [Elavil, Doxepin, Pamelor, Clomipramine] -0.17 -0.60 81
3 [Remeron, Seroquel, Wellbutrin] -0.31 -0.72 126
4 [Cymbalta, Effexor] -0.40 -0.97 75

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

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Guanfacine] 1.00 -0.27 22
2 [Diazepam] 0.89 -0.27 64
3 [Lexapro] 0.33 -0.33 57
4 [Doxepin] 0.19 -0.28 32
5 [Prozac] 0.15 -0.48 40
6 [Abilify] 0.15 -0.30 20
7 [Antiseizure] 0.14 -0.45 49
8 [Wellbutrin] -0.02 -0.47 51
9 [Fluvoxamine] -0.21 -0.58 24
10 [Cymbalta] -0.26 -0.92 39
11 [Zoloft] -0.31 -0.78 36
12 [Pamelor] -0.31 -0.75 16
13 [Clomipramine] -0.33 -0.33 3
14 [Elavil] -0.47 -0.90 30
15 [Vortioxetine] -0.50 -0.75 4
16 [Remeron] -0.50 -0.94 34
17 [Seroquel] -0.51 -0.85 41
18 [Effexor] -0.56 -1.03 36
19 [Paxil] -0.70 -0.80 10
20 [Celexa] -0.89 -1.11 18

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 525 surveyees)
1 [Rupatadine] 3.00 0.00 1
2 [Doxylamine] 1.33 0.00 6
3 [Other antihistamines] 1.06 0.00 34
4 [Seldane] 1.00 0.00 1
5 [Quifenadine] 1.00 0.00 1
6 [Mizolastine] 1.00 0.00 1
7 [Clarinex] 0.95 -0.21 19
8 [Hydroxyzine] 0.69 -0.22 45
9 [Zyrtec] 0.63 -0.11 187
10 [Xyzal] 0.59 -0.41 34
11 [Ebastine] 0.50 0.00 2
12 [Claritin] 0.49 -0.10 152
13 [Pepcid] 0.46 -0.24 157
14 [Acrivastine] 0.40 -0.19 47
15 [Ketotifen] 0.39 -0.46 28
16 [DAO] 0.39 -0.15 54
17 [Allegra] 0.37 -0.12 78
18 [Benadryl] 0.35 -0.25 112
19 [Doxepin] 0.19 -0.28 32
20 [Astemizole] 0.00 0.00 1
21 [Seroquel] -0.51 -0.85 41
22 [Bilastine] -0.67 -1.00 3
23 [Semprex D] -1.50 -1.50 2

Other MCAS treatments and sleep drugs¶

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Low histamine diet] 1.25 0.00 200
2 [Benzodiazepines] 1.15 -0.12 144
3 [LDN] 0.91 -0.26 140
4 [Diazepam] 0.89 -0.27 64
5 [Ambien] 0.83 -0.23 30
6 [Cromolyn] 0.73 -0.27 22
7 [Mestinon] 0.63 -0.47 19
8 [Montekulast] 0.19 -0.28 47

Over-the-counter supplements only¶

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Cardio Miracle] 1.33 0.00 6
2 [Magnesium] 0.87 -0.05 366
3 [TWC detox] 0.78 0.00 9
4 [Oil of oregano] 0.70 -0.05 56
5 [St. John's Wort] 0.70 -0.17 23
6 [Root wellness] 0.67 -0.11 9
7 [Nigella sativa oil] 0.67 -0.05 66
8 [Probiotics prebiotics] 0.63 -0.09 266
9 [Cat's claw] 0.61 -0.13 23
10 [Glutathione] 0.60 -0.07 151
11 [B vitamins] 0.58 -0.12 353
12 [NAC] 0.56 -0.14 243
13 [Vitamin D] 0.56 -0.05 388
14 [Quercetin] 0.54 -0.05 243
15 [Melatonin] 0.53 -0.18 236
16 [Zinc] 0.52 -0.06 273
17 [Resveratrol] 0.52 -0.03 126
18 [Curcumin] 0.52 -0.07 283
19 [CoQ10] 0.51 -0.04 214
20 [CBD without THC] 0.51 -0.08 145
21 [Fish oil etc.] 0.50 -0.02 267
22 [Lion's mane] 0.49 -0.16 106
23 [CBD with THC] 0.48 -0.36 159
24 [ALA] 0.48 -0.06 120
25 [Nigella sativa capsules] 0.48 0.00 62
26 [Lavender] 0.48 -0.08 52
27 [Vitamin C] 0.47 -0.05 318
28 [K vitamins] 0.44 -0.11 142
29 [Dandelion] 0.43 -0.05 96
30 [NADH] 0.39 -0.13 84
31 [Multivitamin] 0.34 -0.08 228
32 [Monolaurin] 0.32 -0.08 37
33 [Pine needle tea] 0.23 -0.13 61
34 [Augmented NAC] 0.19 -0.23 79
35 [Spermidine] 0.09 -0.09 32
36 [Nigella sativa seed] 0.00 -0.10 10

Diet only¶

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Other diet] 1.51 0.00 55
2 [Paleo diet] 1.32 0.00 19
3 [Low histamine diet] 1.25 0.00 200
4 [Wahls protocol] 1.25 -0.25 12
5 [Glutenfree diet] 1.14 -0.01 187
6 [AIP diet] 1.14 -0.11 36
7 [Anti inflammatory diet] 1.00 -0.05 87
8 [Keto diet] 0.92 -0.21 61
9 [Plant based diet] 0.80 -0.09 89
10 [Carnivore diet] 0.72 -0.16 32
11 [Vegan diet] 0.59 -0.29 41

Fasting and autophagy¶

Hydroxychloroquine/Plaquenil inhibits autophagy rather than promotes it.

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Multiday wet fasting] 0.82 -0.26 38
2 [Intermittent fasting] 0.77 -0.08 212
3 [Plaquenil] 0.74 -0.29 42
4 [Resveratrol] 0.52 -0.03 126
5 [Multiday juice fasting] 0.45 -0.35 20
6 [OMAD] 0.44 -0.24 124
7 [24-48 hour fasting] 0.43 -0.42 89
8 [Multiday dry fasting] 0.21 -0.79 14
9 [Spermidine] 0.09 -0.09 32

Mental and alternative treatments only¶

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Avacen] 3.00 0.00 1
2 [Wet cupping] 2.00 0.00 2
3 [Urotherapy] 2.00 0.00 3
4 [Other brain retraining] 1.43 0.00 54
5 [Ayurveda] 1.36 -0.09 11
6 [Photobiomodulation] 1.36 -0.09 11
7 [ASEA Redox] 1.33 -0.33 9
8 [Prayer] 1.26 -0.01 157
9 [Chlorine dioxide] 1.06 0.00 16
10 [Meditation] 0.96 -0.03 250
11 [Other TCM] 0.90 -0.15 39
12 [VNS] 0.89 -0.09 108
13 [Osteopathy] 0.88 -0.29 42
14 [Quantum healing] 0.87 0.00 15
15 [EMDR] 0.80 -0.11 55
16 [Dry cupping] 0.73 -0.08 52
17 [NIBS] 0.71 -0.14 14
18 [Zeolite] 0.67 -0.05 42
19 [Acupuncture] 0.66 -0.21 165
20 [Red light therapy] 0.65 -0.14 78
21 [DNRS] 0.64 -0.21 14
22 [Wim Hof with cold] 0.59 -0.20 56
23 [CBT] 0.54 -0.09 142
24 [Bentonite clay] 0.53 -0.06 32
25 [Homeopathy] 0.51 -0.26 70
26 [Gupta program] 0.46 0.00 13
27 [Chiropractic] 0.46 -0.29 89
28 [Rife] 0.43 -0.36 14
29 [Infrared sauna] 0.41 -0.40 58
30 [Wim Hof without cold] 0.33 -0.31 36
31 [Traditional sauna] 0.27 -0.41 37
32 [Lightning process] 0.25 -0.75 4
33 [Kangen water] 0.00 0.00 3

Mental treatments only¶

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Other brain retraining] 1.43 0.00 54
2 [Prayer] 1.26 -0.01 157
3 [Meditation] 0.96 -0.03 250
4 [EMDR] 0.80 -0.11 55
5 [Acupuncture] 0.66 -0.21 165
6 [DNRS] 0.64 -0.21 14
7 [Wim Hof with cold] 0.59 -0.20 56
8 [CBT] 0.54 -0.09 142
9 [Gupta program] 0.46 0.00 13
10 [Wim Hof without cold] 0.33 -0.31 36
11 [Lightning process] 0.25 -0.75 4

Infusion treatments, Expensive treatments including Stellate Ganglion Block, 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. See https://forum.sickandabandoned.com/t/paper-on-help-apheresis-makes-extraordinary-claims-about-patient-recovery-beate-jaeger-and-colleagues/179
Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [SCIG] 2.00 0.00 2
2 [Inuspheresis] 2.00 0.00 2
3 [Stem cells] 1.67 0.00 6
4 [HBOT >1.5 ATA] 1.52 -0.16 25
5 [PLEX] 1.50 0.00 2
6 [Rapamycin] 1.33 0.00 3
7 [EBOO] 1.00 0.00 7
8 [IVIG] 1.00 0.00 13
9 [HELP apheresis] 0.88 -0.50 8
10 [IV vitamins] 0.79 -0.05 56
11 [Methylene blue] 0.70 -0.07 27
12 [IV ozone] 0.65 -0.17 23
13 [Biologic] 0.56 -0.33 9
14 [Corticosteroids] 0.52 -0.48 147
15 [HBOT <=1.5 ATA] 0.50 -0.27 26
16 [Immunoadsorption] 0.50 0.00 2
17 [SGB] 0.46 0.00 13
18 [DMARD] 0.17 -0.50 12
19 [Methotextrate] -0.67 -1.00 12

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 525 surveyees)
1 [HBOT >1.5 ATA] 1.52 -0.16 25
2 [Rapamycin] 1.33 0.00 3
3 [Alinia] 1.20 0.00 5
4 [Monoclonals] 1.00 0.00 11
5 [Ivermectin] 1.00 -0.14 129
6 [Plaquenil] 0.74 -0.29 42
7 [Oil of oregano] 0.70 -0.05 56
8 [Methylene blue] 0.70 -0.07 27
9 [Nigella sativa oil] 0.67 -0.05 66
10 [IV ozone] 0.65 -0.17 23
11 [Cat's claw] 0.61 -0.13 23
12 [Molnupiravir] 0.60 0.00 5
13 [Aciclovir, Famciclovir, Valtrex, Valcyte] 0.59 -0.09 75
14 [Amphotericin, Canesten, Econazole, Fluconazol... 0.51 -0.27 101
15 [HBOT <=1.5 ATA] 0.50 -0.27 26
16 [Favipiravir] 0.50 0.00 2
17 [Lion's mane] 0.49 -0.16 106
18 [Nigella sativa capsules] 0.48 0.00 62
19 [Lavender] 0.48 -0.08 52
20 [Monolaurin] 0.32 -0.08 37
21 [Paxlovid] 0.29 -0.38 34
22 [Tetracyclines, Fluoroquinolones, Penicillins,... 0.21 -0.55 220
23 [Nigella sativa seed] 0.00 -0.10 10
24 [Biocidin] -0.38 -0.50 8

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 525 surveyees)
1 [Rapamycin] 1.33 0.00 3
2 [Aminoglycosides] 1.00 0.00 1
3 [Metronidazole] 1.00 -0.38 13
4 [Clindamycin] 0.82 -0.55 11
5 [Sulfonamides] 0.56 -0.44 9
6 [Tetracyclines] 0.49 -0.32 47
7 [Antibiotic unknown type] 0.35 -0.30 23
8 [Cephalosporins] 0.30 -0.70 10
9 [Other antibiotic] 0.09 -0.55 11
10 [Penicillins] 0.04 -0.62 48
11 [Macrolides] -0.26 -0.95 19
12 [Fluoroquinolones] -0.36 -0.77 22
13 [Nitrofurantoin] -0.83 -1.17 6

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 525 surveyees)
1 [Monoclonals] 1.00 0.00 11
2 [Ivermectin] 1.00 -0.14 129
3 [TWC detox] 0.78 0.00 9
4 [Plaquenil] 0.74 -0.29 42
5 [Tollovid] 0.67 -0.11 9
6 [Molnupiravir] 0.60 0.00 5
7 [Vitamin D] 0.56 -0.05 388
8 [Melatonin] 0.53 -0.18 236
9 [Favipiravir] 0.50 0.00 2
10 [Vedicinals9] 0.38 -0.38 8
11 [Paxlovid] 0.29 -0.38 34

Hormone and PSSD-related¶

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 525 surveyees)
1 [HCG] 1.00 0.00 1
2 [St. John's Wort] 0.70 -0.17 23
3 [TRT] 0.53 -0.21 19
4 [Ashwagandha] 0.34 -0.19 139
5 [Celexa, Lexapro, Fluvoxamine, Prozac, Paxil, ... -0.17 -0.70 264
6 [Elavil, Doxepin, Pamelor, Clomipramine, Clomi... -0.18 -0.60 84
7 [Remeron, Seroquel, Wellbutrin] -0.31 -0.72 126

Nicotine, CBD, and psychedelic mushrooms¶

Surveyees were instructed to leave answers blank if they weren't comfortable answering questions about CBD (which may be illegal in their jurisdiction).

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Psychedelic mushrooms] 0.70 -0.21 47
2 [Patches] 0.52 -0.29 52
3 [CBD without THC] 0.51 -0.08 145
4 [CBD with THC] 0.48 -0.36 159
5 [Other nicotine] 0.18 -0.32 28
6 [Vaping] -0.09 -0.31 35
7 [Cigarettes] -0.18 -0.28 39

Chelation¶

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Other chelation] 1.38 0.00 13
2 [Activated charcoal] 0.83 -0.06 35
3 [EDTA] 0.62 -0.12 8
4 [DTPA] 0.00 0.00 2

POTS¶

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Water and salt] 1.04 -0.02 272
2 [Guanfacine] 1.00 -0.27 22
3 [Drinking water] 0.96 0.00 152
4 [Beta blockers] 0.66 -0.37 136
5 [Compression garments] 0.65 -0.10 161
6 [Sleeping with head of bed elevated] 0.52 -0.13 134

Spike protein detox¶

https://worldcouncilforhealth.org/wp-content/uploads/2022/10/Spike-detox-folded-leaflet-17-10-22-LR20.pdf

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Ivermectin] 1.00 -0.14 129
2 [Magnesium] 0.87 -0.05 366
3 [TWC detox] 0.78 0.00 9
4 [Plaquenil] 0.74 -0.29 42
5 [Nigella sativa oil] 0.67 -0.05 66
6 [Vitamin D] 0.56 -0.05 388
7 [NAC] 0.56 -0.14 243
8 [Quercetin] 0.54 -0.05 243
9 [Zinc] 0.52 -0.06 273
10 [Curcumin] 0.52 -0.07 283
11 [Nigella sativa capsules] 0.48 0.00 62
12 [Vitamin C] 0.47 -0.05 318
13 [Vedicinals9] 0.38 -0.38 8
14 [Augmented NAC] 0.19 -0.23 79
15 [Nigella sativa seed] 0.00 -0.10 10

Commercial products, urotherapy, chlorine dioxide (MMS)¶

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees)
1 [Avacen] 3.00 0.00 1
2 [Urotherapy] 2.00 0.00 3
3 [ASEA Redox] 1.33 -0.33 9
4 [Cardio Miracle] 1.33 0.00 6
5 [Chlorine dioxide] 1.06 0.00 16
6 [TWC detox] 0.78 0.00 9
7 [Zeolite] 0.67 -0.05 42
8 [Root wellness] 0.67 -0.11 9
9 [DNRS] 0.64 -0.21 14
10 [Gupta program] 0.46 0.00 13
11 [Lightning process] 0.25 -0.75 4
12 [Augmented NAC] 0.19 -0.23 79
13 [Kangen water] 0.00 0.00 3
14 [Frequency wand] -0.62 -1.25 8

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 stats===
PostVac            4.6%   13/281 patients
LC                 4.6%   10/219 patients
MECFS              4.0%   1/25 patients

SNRIs (Serotonin–Norepinephrine Reuptake Inhibitors)¶

Cymbalta (Duloxetine)¶

===Popularity stats===
PostVac            7.8%   22/281 patients
LC                 5.5%   12/219 patients
MECFS              20.0%   5/25 patients

Effexor (Venlafaxine)¶

===Popularity stats===
PostVac            7.5%   21/281 patients
LC                 3.2%   7/219 patients
MECFS              32.0%   8/25 patients

TCAs (Tricyclic Antidepressants)¶

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

Elavil (Amitriptyline)¶

===Popularity stats===
PostVac            6.4%   18/281 patients
LC                 3.2%   7/219 patients
MECFS              20.0%   5/25 patients

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

===Popularity stats===
PostVac            6.8%   19/281 patients
LC                 5.5%   12/219 patients
MECFS              4.0%   1/25 patients

Other anti-depressants and anti-psychotics¶

Abilify (Aripiprazole)¶

===Popularity stats===
PostVac            1.4%   4/281 patients
LC                 5.9%   13/219 patients
MECFS              12.0%   3/25 patients

Tylenol, other NSAIDs, prescription blood thinners, (natural) anticoag¶

Tylenol (paracetamol)¶

===Popularity stats===
PostVac            38.4%   108/281 patients
LC                 46.6%   102/219 patients
MECFS              48.0%   12/25 patients

Aspirin (acetylsalicylic acid)¶

===Popularity stats===
PostVac            43.1%   121/281 patients
LC                 43.4%   95/219 patients
MECFS              44.0%   11/25 patients

Advil (ibuprofen)¶

===Popularity stats===
PostVac            46.6%   131/281 patients
LC                 50.7%   111/219 patients
MECFS              48.0%   12/25 patients

Other NSAID (Nonsteroidal anti-inflammatory drug)¶

===Popularity stats===
PostVac            34.2%   96/281 patients
LC                 31.1%   68/219 patients
MECFS              28.0%   7/25 patients

Prescription blood thinners¶

Heparin, Eliquis / Apixiban, Clopidogrel, Xarelto, Sulodexide

===Popularity stats===
PostVac            2.8%   8/281 patients
LC                 2.7%   6/219 patients
MECFS              12.0%   3/25 patients

===Popularity stats===
PostVac            3.2%   9/281 patients
LC                 4.1%   9/219 patients
MECFS              4.0%   1/25 patients

===Popularity stats===
PostVac            4.6%   13/281 patients
LC                 3.7%   8/219 patients
MECFS              4.0%   1/25 patients

Nattokinase¶

===Popularity stats===
PostVac            45.6%   128/281 patients
LC                 39.3%   86/219 patients
MECFS              36.0%   9/25 patients

Serrapeptase¶

===Popularity stats===
PostVac            20.6%   58/281 patients
LC                 22.8%   50/219 patients
MECFS              16.0%   4/25 patients

Lumbrokinase¶

===Popularity stats===
PostVac            10.7%   30/281 patients
LC                 9.1%   20/219 patients
MECFS              8.0%   2/25 patients

Hormone¶

HCG (Human chorionic gonadotropin)¶

===Popularity stats===
PostVac            0.0%   0/281 patients
LC                 0.5%   1/219 patients
MECFS              0.0%   0/25 patients

TRT (Testosterone replacement therapy, related to HRT / hormone replacement therapy)¶

===Popularity stats===
PostVac            2.8%   8/281 patients
LC                 5.0%   11/219 patients
MECFS              0.0%   0/25 patients

IVIG, SCIG, and other infusion-based treatment¶

IVIG (Intravenous Immunoglobulin)¶

===Popularity stats===
PostVac            3.9%   11/281 patients
LC                 0.5%   1/219 patients
MECFS              4.0%   1/25 patients

SCIG (subcutaneous immunoglobulin)¶

===Popularity stats===
PostVac            0.7%   2/281 patients
LC                 0.0%   0/219 patients
MECFS              0.0%   0/25 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 stats===
PostVac            0.7%   2/281 patients
LC                 0.0%   0/219 patients
MECFS              0.0%   0/25 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. See https://forum.sickandabandoned.com/t/paper-on-help-apheresis-makes-extraordinary-claims-about-patient-recovery-beate-jaeger-and-colleagues/179 
===Popularity stats===
PostVac            1.4%   4/281 patients
LC                 1.8%   4/219 patients
MECFS              0.0%   0/25 patients

Inuspheresis¶

===Popularity stats===
PostVac            0.0%   0/281 patients
LC                 0.9%   2/219 patients
MECFS              0.0%   0/25 patients

Immunoadsorption¶

===Popularity stats===
PostVac            0.7%   2/281 patients
LC                 0.0%   0/219 patients
MECFS              0.0%   0/25 patients

IV ozone (intravenous ozone)¶

===Popularity stats===
PostVac            6.0%   17/281 patients
LC                 1.4%   3/219 patients
MECFS              12.0%   3/25 patients

SGB (Stellate ganglion block)¶

===Popularity stats===
PostVac            2.1%   6/281 patients
LC                 3.2%   7/219 patients
MECFS              0.0%   0/25 patients

Stem cells¶

===Popularity stats===
PostVac            1.1%   3/281 patients
LC                 0.9%   2/219 patients
MECFS              4.0%   1/25 patients

IV vitamins (intravenous vitamins) and IV vitamin C¶

===Popularity stats===
PostVac            12.8%   36/281 patients
LC                 6.4%   14/219 patients
MECFS              24.0%   6/25 patients

===Popularity stats===
PostVac            8.9%   25/281 patients
LC                 4.6%   10/219 patients
MECFS              16.0%   4/25 patients

EBOO (extracorporeal blood oxygenation and ozonation)¶

===Popularity stats===
PostVac            1.8%   5/281 patients
LC                 0.5%   1/219 patients
MECFS              4.0%   1/25 patients

Methylene blue¶

===Popularity stats===
PostVac            8.2%   23/281 patients
LC                 1.8%   4/219 patients
MECFS              0.0%   0/25 patients

HBOT (Hyperbaric Oxygen Therapy)¶

HBOT <=1.5 ATA, HBOT >1.5 ATA

===Popularity stats===
PostVac            6.0%   17/281 patients
LC                 2.7%   6/219 patients
MECFS              12.0%   3/25 patients

===Popularity stats===
PostVac            4.6%   13/281 patients
LC                 4.6%   10/219 patients
MECFS              8.0%   2/25 patients

Chelation¶

Activated charcoal¶

===Popularity stats===
PostVac            7.5%   21/281 patients
LC                 3.7%   8/219 patients
MECFS              24.0%   6/25 patients

EDTA (Ethylenediaminetetraacetic acid)¶

===Popularity stats===
PostVac            2.1%   6/281 patients
LC                 0.0%   0/219 patients
MECFS              8.0%   2/25 patients

DTPA (Diethylenetriamine pentaacetate)¶

===Popularity stats===
PostVac            0.7%   2/281 patients
LC                 0.0%   0/219 patients
MECFS              0.0%   0/25 patients

Other chelation¶

===Popularity stats===
PostVac            3.6%   10/281 patients
LC                 0.5%   1/219 patients
MECFS              8.0%   2/25 patients

POTS related treatments (non-pharmaceutical)¶

Compression garments (Compression garments / stockings)¶

===Popularity stats===
PostVac            25.3%   71/281 patients
LC                 38.8%   85/219 patients
MECFS              20.0%   5/25 patients

Water and salt (Increased intake of water and salt)¶

Note: surveyees may have misinterpreted the survey question ('Increased intake of water and salt'), use the data with caution. The higher popularity of this intervention suggests that people without POTS or dysautonomia answered this question and have a different interpretation as to what this intervention is.

===Popularity stats===
PostVac            45.9%   129/281 patients
LC                 61.6%   135/219 patients
MECFS              32.0%   8/25 patients

Drinking water - specifically "Drinking water before getting up in the morning"¶

===Popularity stats===
PostVac            21.7%   61/281 patients
LC                 38.8%   85/219 patients
MECFS              24.0%   6/25 patients

Sleeping with head of bed elevated - specifically "Sleeping with head of the bed elevated"¶

===Popularity stats===
PostVac            26.0%   73/281 patients
LC                 25.1%   55/219 patients
MECFS              24.0%   6/25 patients

Immune suppressing drugs¶

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

===Popularity stats===
PostVac            33.8%   95/281 patients
LC                 20.5%   45/219 patients
MECFS              28.0%   7/25 patients

Do people with lower severity respond better to corticosteroids?
Current severity 4 or less | Average (mean) score: 0.83 | n =  48
Current severity 5 or more | Average (mean) score: 0.35 | n =  75

Methotextrate¶

===Popularity stats===
PostVac            3.2%   9/281 patients
LC                 1.4%   3/219 patients
MECFS              0.0%   0/25 patients

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

===Popularity stats===
PostVac            2.5%   7/281 patients
LC                 0.9%   2/219 patients
MECFS              0.0%   0/25 patients

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

===Popularity stats===
PostVac            2.1%   6/281 patients
LC                 2.7%   6/219 patients
MECFS              0.0%   0/25 patients

Traditional anti-microbials¶

Anti-parasitic / Anti-helmintic¶

Ivermectin (Stromectol, Soolantra)¶

===Popularity stats===
PostVac            33.5%   94/281 patients
LC                 12.3%   27/219 patients
MECFS              32.0%   8/25 patients

Hydroxychloroquine (Plaquenil)¶

===Popularity stats===
PostVac            11.0%   31/281 patients
LC                 3.2%   7/219 patients
MECFS              16.0%   4/25 patients

Alinia (Nitazoxanide)¶

===Popularity stats===
PostVac            1.1%   3/281 patients
LC                 0.0%   0/219 patients
MECFS              8.0%   2/25 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.

Rapamycin (Sirolimus)¶

===Popularity stats===
PostVac            0.0%   0/281 patients
LC                 0.9%   2/219 patients
MECFS              4.0%   1/25 patients

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

Valtrex (valacyclovir / valaciclovir)¶

===Popularity stats===
PostVac            6.8%   19/281 patients
LC                 10.0%   22/219 patients
MECFS              12.0%   3/25 patients

Valcyte (valganciclovir / valgancyclovir)¶

===Popularity stats===
PostVac            0.4%   1/281 patients
LC                 0.5%   1/219 patients
MECFS              4.0%   1/25 patients

Aciclovir / acyclovir¶

===Popularity stats===
PostVac            4.3%   12/281 patients
LC                 4.6%   10/219 patients
MECFS              4.0%   1/25 patients

Famciclovir / Famvir / Famyclovir¶

===Popularity stats===
PostVac            0.7%   2/281 patients
LC                 0.9%   2/219 patients
MECFS              4.0%   1/25 patients

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

COVID-19 treatments¶

Paxlovid (Nirmatrelvir / ritonavir)¶

===Popularity stats===
PostVac            3.6%   10/281 patients
LC                 10.5%   23/219 patients
MECFS              4.0%   1/25 patients

Molnupiravir¶

===Popularity stats===
PostVac            0.7%   2/281 patients
LC                 1.4%   3/219 patients
MECFS              0.0%   0/25 patients

Monoclonal antibodies (monoclonals)¶

===Popularity stats===
PostVac            2.5%   7/281 patients
LC                 1.4%   3/219 patients
MECFS              4.0%   1/25 patients

Tollovid¶

===Popularity stats===
PostVac            0.4%   1/281 patients
LC                 3.7%   8/219 patients
MECFS              0.0%   0/25 patients

Vedicinals9¶

===Popularity stats===
PostVac            1.4%   4/281 patients
LC                 1.8%   4/219 patients
MECFS              0.0%   0/25 patients

Prescription drugs¶

Opiates, e.g. fentanyl, codeine¶

===Popularity stats===
PostVac            13.5%   38/281 patients
LC                 6.4%   14/219 patients
MECFS              28.0%   7/25 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 stats===
PostVac            12.8%   36/281 patients
LC                 7.8%   17/219 patients
MECFS              12.0%   3/25 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 stats===
PostVac            28.1%   79/281 patients
LC                 26.0%   57/219 patients
MECFS              32.0%   8/25 patients

Ambien (zolpidem)¶

===Popularity stats===
PostVac            4.3%   12/281 patients
LC                 5.5%   12/219 patients
MECFS              24.0%   6/25 patients

Diazepam (Valium)¶

===Popularity stats===
PostVac            14.6%   41/281 patients
LC                 8.7%   19/219 patients
MECFS              16.0%   4/25 patients

Other muscle relaxers e.g. Baclofen, cyclobenzaprine¶

===Popularity stats===
PostVac            11.7%   33/281 patients
LC                 11.9%   26/219 patients
MECFS              20.0%   5/25 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 stats===
PostVac            8.5%   24/281 patients
LC                 10.0%   22/219 patients
MECFS              12.0%   3/25 patients

Beta blockers¶

===Popularity stats===
PostVac            25.3%   71/281 patients
LC                 26.9%   59/219 patients
MECFS              24.0%   6/25 patients

Guanfacine (Tenex)¶

===Popularity stats===
PostVac            1.8%   5/281 patients
LC                 7.8%   17/219 patients
MECFS              0.0%   0/25 patients

Mestinon (Pyridostigmine)¶

===Popularity stats===
PostVac            2.5%   7/281 patients
LC                 5.0%   11/219 patients
MECFS              4.0%   1/25 patients

Montekulast (Singulair)¶

===Popularity stats===
PostVac            8.2%   23/281 patients
LC                 9.1%   20/219 patients
MECFS              16.0%   4/25 patients

Colchicine¶

===Popularity stats===
PostVac            7.8%   22/281 patients
LC                 3.7%   8/219 patients
MECFS              8.0%   2/25 patients

Metformin¶

===Popularity stats===
PostVac            3.6%   10/281 patients
LC                 8.7%   19/219 patients
MECFS              0.0%   0/25 patients

Statins (including red yeast rice)¶

Maraviroc (Selzentry / Celsentri)¶

===Popularity stats===
PostVac            2.5%   7/281 patients
LC                 1.8%   4/219 patients
MECFS              0.0%   0/25 patients

Anti-histamines¶

Acrivastine (Benadryl Allergy Relief in the UK)¶

===Popularity stats===
PostVac            10.0%   28/281 patients
LC                 8.7%   19/219 patients
MECFS              0.0%   0/25 patients

Cetirizine (Zyrtec)¶

===Popularity stats===
PostVac            30.2%   85/281 patients
LC                 42.9%   94/219 patients
MECFS              32.0%   8/25 patients

Diphenhydramine / Benadryl¶

===Popularity stats===
PostVac            17.8%   50/281 patients
LC                 26.5%   58/219 patients
MECFS              16.0%   4/25 patients

Famotidine (Pepcid)¶

===Popularity stats===
PostVac            28.8%   81/281 patients
LC                 32.4%   71/219 patients
MECFS              20.0%   5/25 patients

Fexofenadine (Allegra)¶

===Popularity stats===
PostVac            11.7%   33/281 patients
LC                 19.6%   43/219 patients
MECFS              8.0%   2/25 patients

Loratadine (Claritin)¶

===Popularity stats===
PostVac            24.2%   68/281 patients
LC                 37.0%   81/219 patients
MECFS              12.0%   3/25 patients

Ketotifen (Zaditor)¶

===Popularity stats===
PostVac            5.0%   14/281 patients
LC                 5.5%   12/219 patients
MECFS              8.0%   2/25 patients

Levocetirizine (Xyzal)¶

===Popularity stats===
PostVac            4.3%   12/281 patients
LC                 9.6%   21/219 patients
MECFS              4.0%   1/25 patients

DAO enzymes (Diamine oxidase enzymes)¶

===Popularity stats===
PostVac            7.8%   22/281 patients
LC                 13.7%   30/219 patients
MECFS              8.0%   2/25 patients

Other anti-histamines¶

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

Desloratadine (Clarinex)¶

===Popularity stats===
PostVac            3.9%   11/281 patients
LC                 3.7%   8/219 patients
MECFS              0.0%   0/25 patients

Cromolyn / Cromoglicic acid¶

===Popularity stats===
PostVac            4.3%   12/281 patients
LC                 3.7%   8/219 patients
MECFS              8.0%   2/25 patients

LDN / Low dose naltrexone¶

===Popularity stats===
PostVac            23.8%   67/281 patients
LC                 29.7%   65/219 patients
MECFS              32.0%   8/25 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 stats===
PostVac            15.7%   44/281 patients
LC                 8.2%   18/219 patients
MECFS              16.0%   4/25 patients

===Popularity stats===
PostVac            15.7%   44/281 patients
LC                 6.4%   14/219 patients
MECFS              16.0%   4/25 patients

===Popularity stats===
PostVac            1.8%   5/281 patients
LC                 1.8%   4/219 patients
MECFS              4.0%   1/25 patients

ALA / Alpha-lipoic acid¶

===Popularity stats===
PostVac            24.2%   68/281 patients
LC                 19.6%   43/219 patients
MECFS              36.0%   9/25 patients

Ashwagandha¶

===Popularity stats===
PostVac            28.1%   79/281 patients
LC                 25.6%   56/219 patients
MECFS              16.0%   4/25 patients

Biocidin¶

===Popularity stats===
PostVac            1.4%   4/281 patients
LC                 1.4%   3/219 patients
MECFS              4.0%   1/25 patients

Cat's claw (Cats claw, uña de gato, uncaria tomentosa)¶

===Popularity stats===
PostVac            4.3%   12/281 patients
LC                 3.7%   8/219 patients
MECFS              12.0%   3/25 patients

CBD without THC | CBD (cannabidiol) without THC¶

===Popularity stats===
PostVac            26.3%   74/281 patients
LC                 28.8%   63/219 patients
MECFS              32.0%   8/25 patients

CBD with THC | CBD (cannabidiol) with THC¶

===Popularity stats===
PostVac            32.0%   90/281 patients
LC                 28.8%   63/219 patients
MECFS              24.0%   6/25 patients

CoQ10 (Co-enzyme q10 / Coenzyme Q10)¶

===Popularity stats===
PostVac            36.3%   102/281 patients
LC                 43.4%   95/219 patients
MECFS              68.0%   17/25 patients

Curcumin¶

===Popularity stats===
PostVac            56.9%   160/281 patients
LC                 50.2%   110/219 patients
MECFS              52.0%   13/25 patients

Dandelion¶

===Popularity stats===
PostVac            21.0%   59/281 patients
LC                 13.7%   30/219 patients
MECFS              28.0%   7/25 patients

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

===Popularity stats===
PostVac            49.5%   139/281 patients
LC                 51.1%   112/219 patients
MECFS              64.0%   16/25 patients

Glutathione¶

===Popularity stats===
PostVac            35.9%   101/281 patients
LC                 19.2%   42/219 patients
MECFS              32.0%   8/25 patients

Lavender¶

===Popularity stats===
PostVac            12.1%   34/281 patients
LC                 7.3%   16/219 patients
MECFS              8.0%   2/25 patients

Lion's mane¶

===Popularity stats===
PostVac            21.7%   61/281 patients
LC                 19.2%   42/219 patients
MECFS              12.0%   3/25 patients

Melatonin¶

===Popularity stats===
PostVac            43.8%   123/281 patients
LC                 46.6%   102/219 patients
MECFS              44.0%   11/25 patients

Monolaurin (Lauricidin)¶

===Popularity stats===
PostVac            7.5%   21/281 patients
LC                 6.4%   14/219 patients
MECFS              8.0%   2/25 patients

NAC (N-Acetyl Cysteine)¶

===Popularity stats===
PostVac            49.1%   138/281 patients
LC                 43.8%   96/219 patients
MECFS              36.0%   9/25 patients

Augmented NAC (Augmented NAC, Quantum NAC)¶

===Popularity stats===
PostVac            16.0%   45/281 patients
LC                 13.2%   29/219 patients
MECFS              20.0%   5/25 patients

NADH (Nicotinamide adenine dinucleotide)¶

===Popularity stats===
PostVac            13.9%   39/281 patients
LC                 17.8%   39/219 patients
MECFS              24.0%   6/25 patients

Oil of oregano¶

===Popularity stats===
PostVac            11.7%   33/281 patients
LC                 10.0%   22/219 patients
MECFS              4.0%   1/25 patients

Pine needle tea¶

===Popularity stats===
PostVac            19.2%   54/281 patients
LC                 2.7%   6/219 patients
MECFS              4.0%   1/25 patients

Probiotics prebiotics¶

===Popularity stats===
PostVac            45.9%   129/281 patients
LC                 54.8%   120/219 patients
MECFS              68.0%   17/25 patients

Quercetin¶

===Popularity stats===
PostVac            52.7%   148/281 patients
LC                 38.4%   84/219 patients
MECFS              44.0%   11/25 patients

Resveratrol¶

===Popularity stats===
PostVac            28.8%   81/281 patients
LC                 18.3%   40/219 patients
MECFS              20.0%   5/25 patients

Spermidine¶

===Popularity stats===
PostVac            10.3%   29/281 patients
LC                 1.4%   3/219 patients
MECFS              0.0%   0/25 patients

St. John's Wort (SJW)¶

===Popularity stats===
PostVac            6.4%   18/281 patients
LC                 1.8%   4/219 patients
MECFS              4.0%   1/25 patients

B vitamins, e.g. B6, B12¶

===Popularity stats===
PostVac            64.4%   181/281 patients
LC                 71.2%   156/219 patients
MECFS              64.0%   16/25 patients

Vitamin C¶

*Intravenous vitamin C is listed elsewhere as "IV vitamin C".

===Popularity stats===
PostVac            60.9%   171/281 patients
LC                 59.4%   130/219 patients
MECFS              68.0%   17/25 patients

Vitamin D¶

===Popularity stats===
PostVac            72.6%   204/281 patients
LC                 75.3%   165/219 patients
MECFS              76.0%   19/25 patients

K vitamins¶

===Popularity stats===
PostVac            30.6%   86/281 patients
LC                 21.9%   48/219 patients
MECFS              32.0%   8/25 patients

Multivitamin / Multi-vitamin¶

===Popularity stats===
PostVac            40.9%   115/281 patients
LC                 46.6%   102/219 patients
MECFS              44.0%   11/25 patients

Magnesium¶

===Popularity stats===
PostVac            68.0%   191/281 patients
LC                 70.3%   154/219 patients
MECFS              84.0%   21/25 patients

Zinc¶

===Popularity stats===
PostVac            54.1%   152/281 patients
LC                 47.5%   104/219 patients
MECFS              68.0%   17/25 patients

Recreational drugs¶

CBD is found above, not here.

Vaping (Nicotine - Vaping)¶

===Popularity stats===
PostVac            6.4%   18/281 patients
LC                 7.8%   17/219 patients
MECFS              0.0%   0/25 patients

Cigarettes (Nicotine - Cigarettes)¶

===Popularity stats===
PostVac            9.6%   27/281 patients
LC                 5.0%   11/219 patients
MECFS              4.0%   1/25 patients

Patches (Nicotine - Patches)¶

===Popularity stats===
PostVac            8.2%   23/281 patients
LC                 12.3%   27/219 patients
MECFS              8.0%   2/25 patients

Other nicotine¶

===Popularity stats===
PostVac            6.4%   18/281 patients
LC                 4.1%   9/219 patients
MECFS              4.0%   1/25 patients

Psychedelic mushrooms¶

===Popularity stats===
PostVac            6.8%   19/281 patients
LC                 12.3%   27/219 patients
MECFS              4.0%   1/25 patients

Diets¶

Low histamine diet¶

===Popularity stats===
PostVac            35.6%   100/281 patients
LC                 40.6%   89/219 patients
MECFS              44.0%   11/25 patients

Glutenfree diet / Gluten-free diet¶

===Popularity stats===
PostVac            36.3%   102/281 patients
LC                 33.3%   73/219 patients
MECFS              48.0%   12/25 patients

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

===Popularity stats===
PostVac            15.3%   43/281 patients
LC                 18.3%   40/219 patients
MECFS              24.0%   6/25 patients

Vegan diet¶

===Popularity stats===
PostVac            7.5%   21/281 patients
LC                 8.2%   18/219 patients
MECFS              8.0%   2/25 patients

Autoimmune protocol diet (AIP diet)¶

===Popularity stats===
PostVac            5.7%   16/281 patients
LC                 8.7%   19/219 patients
MECFS              4.0%   1/25 patients

Wahls protocol diet¶

===Popularity stats===
PostVac            2.8%   8/281 patients
LC                 1.8%   4/219 patients
MECFS              0.0%   0/25 patients

Carnivore diet or meat-only diet¶

===Popularity stats===
PostVac            7.1%   20/281 patients
LC                 5.0%   11/219 patients
MECFS              4.0%   1/25 patients

Keto diet / ketogenic diet¶

===Popularity stats===
PostVac            8.5%   24/281 patients
LC                 15.5%   34/219 patients
MECFS              12.0%   3/25 patients

Anti inflammatory diet / Anti-inflammatory diet¶

===Popularity stats===
PostVac            16.7%   47/281 patients
LC                 16.4%   36/219 patients
MECFS              16.0%   4/25 patients

Other diet¶

===Popularity stats===
PostVac            13.5%   38/281 patients
LC                 6.8%   15/219 patients
MECFS              8.0%   2/25 patients

Fasting¶

OMAD / One meal a day¶

===Popularity stats===
PostVac            29.2%   82/281 patients
LC                 16.4%   36/219 patients
MECFS              24.0%   6/25 patients

Intermittent fasting, more than 1 meal a day¶

===Popularity stats===
PostVac            45.2%   127/281 patients
LC                 33.3%   73/219 patients
MECFS              48.0%   12/25 patients

24-48 hour fasting¶

===Popularity stats===
PostVac            19.2%   54/281 patients
LC                 14.2%   31/219 patients
MECFS              16.0%   4/25 patients

Multiday wet fasting | >48 hour fasting - water allowed¶

===Popularity stats===
PostVac            7.5%   21/281 patients
LC                 7.8%   17/219 patients
MECFS              0.0%   0/25 patients

Multiday dry fasting | >48 hour fasting - water not allowed¶

===Popularity stats===
PostVac            3.2%   9/281 patients
LC                 2.3%   5/219 patients
MECFS              0.0%   0/25 patients

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

===Popularity stats===
PostVac            4.3%   12/281 patients
LC                 3.7%   8/219 patients
MECFS              0.0%   0/25 patients

Exercise or pacing strategies¶

Intense exercise (with sweating)¶

===Popularity stats===
PostVac            45.9%   129/281 patients
LC                 46.6%   102/219 patients
MECFS              48.0%   12/25 patients

Light exercise (no sweating)¶

===Popularity stats===
PostVac            63.0%   177/281 patients
LC                 62.1%   136/219 patients
MECFS              72.0%   18/25 patients

Graded exercise therapy¶

===Popularity stats===
PostVac            16.4%   46/281 patients
LC                 28.8%   63/219 patients
MECFS              36.0%   9/25 patients

Avoiding exercise¶

===Popularity stats===
PostVac            53.0%   149/281 patients
LC                 64.4%   141/219 patients
MECFS              64.0%   16/25 patients

Pacing strategies, e.g. spoon theory¶

===Popularity stats===
PostVac            31.0%   87/281 patients
LC                 62.6%   137/219 patients
MECFS              60.0%   15/25 patients

Alternative treatments, mental treatments, other modalities¶

CBT / Cognitive Behavioral Therapy¶

===Popularity stats===
PostVac            24.9%   70/281 patients
LC                 28.8%   63/219 patients
MECFS              36.0%   9/25 patients

Prayer¶

===Popularity stats===
PostVac            33.8%   95/281 patients
LC                 22.8%   50/219 patients
MECFS              48.0%   12/25 patients

Meditation¶

===Popularity stats===
PostVac            42.7%   120/281 patients
LC                 54.3%   119/219 patients
MECFS              44.0%   11/25 patients

Eye Movement Desensitization and Reprocessing (EMDR)¶

===Popularity stats===
PostVac            9.3%   26/281 patients
LC                 11.4%   25/219 patients
MECFS              16.0%   4/25 patients

DNRS (Dynamic Neural Retraining System™)¶

===Popularity stats===
PostVac            1.4%   4/281 patients
LC                 3.7%   8/219 patients
MECFS              8.0%   2/25 patients

Gupta program¶

===Popularity stats===
PostVac            1.8%   5/281 patients
LC                 3.2%   7/219 patients
MECFS              4.0%   1/25 patients

Lightning process¶

===Popularity stats===
PostVac            0.4%   1/281 patients
LC                 1.4%   3/219 patients
MECFS              0.0%   0/25 patients

Wim Hof without cold (Wim Hof, no cold showers or cold water)¶

===Popularity stats===
PostVac            5.7%   16/281 patients
LC                 8.7%   19/219 patients
MECFS              4.0%   1/25 patients

Wim Hof with cold (Wim Hof, with cold showers or cold water)¶

===Popularity stats===
PostVac            9.3%   26/281 patients
LC                 13.7%   30/219 patients
MECFS              0.0%   0/25 patients

Other brain retraining¶

===Popularity stats===
PostVac            9.6%   27/281 patients
LC                 11.4%   25/219 patients
MECFS              8.0%   2/25 patients

Acupuncture¶

===Popularity stats===
PostVac            35.9%   101/281 patients
LC                 25.6%   56/219 patients
MECFS              32.0%   8/25 patients

Chiropractic¶

===Popularity stats===
PostVac            23.5%   66/281 patients
LC                 8.7%   19/219 patients
MECFS              16.0%   4/25 patients

Dry cupping¶

===Popularity stats===
PostVac            12.5%   35/281 patients
LC                 6.8%   15/219 patients
MECFS              8.0%   2/25 patients

Wet cupping¶

===Popularity stats===
PostVac            0.7%   2/281 patients
LC                 0.0%   0/219 patients
MECFS              0.0%   0/25 patients

Other TCM¶

===Popularity stats===
PostVac            8.9%   25/281 patients
LC                 5.5%   12/219 patients
MECFS              8.0%   2/25 patients

Homeopathy¶

===Popularity stats===
PostVac            16.7%   47/281 patients
LC                 6.8%   15/219 patients
MECFS              32.0%   8/25 patients

Osteopathy¶

===Popularity stats===
PostVac            11.0%   31/281 patients
LC                 3.7%   8/219 patients
MECFS              12.0%   3/25 patients

Rife (Rife machine)¶

===Popularity stats===
PostVac            3.2%   9/281 patients
LC                 0.5%   1/219 patients
MECFS              16.0%   4/25 patients

Quantum healing¶

===Popularity stats===
PostVac            3.9%   11/281 patients
LC                 1.4%   3/219 patients
MECFS              4.0%   1/25 patients

NIBS (Non-invasive Brain Stimulation)¶

===Popularity stats===
PostVac            2.5%   7/281 patients
LC                 2.7%   6/219 patients
MECFS              4.0%   1/25 patients

VNS (Vagus Nerve Stimulation)¶

===Popularity stats===
PostVac            19.9%   56/281 patients
LC                 21.5%   47/219 patients
MECFS              20.0%   5/25 patients

Photobiomodulation (PBM)¶

===Popularity stats===
PostVac            2.1%   6/281 patients
LC                 1.4%   3/219 patients
MECFS              8.0%   2/25 patients

Bentonite clay¶

===Popularity stats===
PostVac            8.9%   25/281 patients
LC                 1.4%   3/219 patients
MECFS              16.0%   4/25 patients

Chlorine dioxide (MMS, Mineral Miracle Solution)¶

===Popularity stats===
PostVac            4.3%   12/281 patients
LC                 0.9%   2/219 patients
MECFS              8.0%   2/25 patients

Urotherapy (Urine therapy)¶

===Popularity stats===
PostVac            0.7%   2/281 patients
LC                 0.0%   0/219 patients
MECFS              4.0%   1/25 patients

Zeolite¶

===Popularity stats===
PostVac            12.1%   34/281 patients
LC                 2.7%   6/219 patients
MECFS              8.0%   2/25 patients

ASEA Redox¶

===Popularity stats===
PostVac            3.2%   9/281 patients
LC                 0.0%   0/219 patients
MECFS              0.0%   0/25 patients

Avacen (Avacen machine)¶

https://avacen.com/

===Popularity stats===
PostVac            0.4%   1/281 patients
LC                 0.0%   0/219 patients
MECFS              0.0%   0/25 patients

Cardio Miracle supplement¶

===Popularity stats===
PostVac            2.1%   6/281 patients
LC                 0.0%   0/219 patients
MECFS              0.0%   0/25 patients

Kangen water (alkaline water)¶

===Popularity stats===
PostVac            0.7%   2/281 patients
LC                 0.5%   1/219 patients
MECFS              0.0%   0/25 patients

Frequency wand (Prife iTeraCare frequency wand)¶

This data may be biased as many users blocked the survey recruiter on Facebook and/or participate in the multi-level marketing scheme that sells this product.

===Popularity stats===
PostVac            2.8%   8/281 patients
LC                 0.0%   0/219 patients
MECFS              0.0%   0/25 patients

Root wellness clean slate¶

===Popularity stats===
PostVac            2.5%   7/281 patients
LC                 0.5%   1/219 patients
MECFS              4.0%   1/25 patients

TWC detox (The Wellness Company spike protein detox)¶

===Popularity stats===
PostVac            2.5%   7/281 patients
LC                 0.5%   1/219 patients
MECFS              4.0%   1/25 patients

Ayurveda¶

===Popularity stats===
PostVac            2.1%   6/281 patients
LC                 1.8%   4/219 patients
MECFS              4.0%   1/25 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 stats===
PostVac            7.8%   22/281 patients
LC                 5.0%   11/219 patients
MECFS              16.0%   4/25 patients

Infrared sauna¶

===Popularity stats===
PostVac            12.5%   35/281 patients
LC                 8.2%   18/219 patients
MECFS              20.0%   5/25 patients

Red light therapy¶

===Popularity stats===
PostVac            19.2%   54/281 patients
LC                 9.1%   20/219 patients
MECFS              16.0%   4/25 patients

Time - The passage of time¶

Around 85% engaged with this question while others did not. It is possible that the question is interpreted differently between surveyees.

===Popularity stats===
PostVac            87.2%   245/281 patients
LC                 91.3%   200/219 patients
MECFS              80.0%   20/25 patients

Demographics¶

Number of treatments tried¶

Number of treatments tried versus biological sex:
Female:  33.3
Male:    26.9

Age¶

Age distribution in Long COVID surveyees

Age distribution in COVID vaccine injured surveyees

Biological sex¶

69.2% of surveyees indicated that they were biologically female.

Walking ability¶

3.0    109
0.0     58
2.0     54
1.0     46
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.

Recruitment - referrer source¶

The survey asked:

How did you find out about this survey? e.g. r/CovidLongHaulers, a specific Twitter account, etc.
If there is a pre-filled answer below that is correct, please do not change it.

"Reddit Long COVID" refers to Long COVID-related groups (mainly r/CovidLongHaulers) on the Reddit platform.

Referrer
Reddit Long COVID 180
Facebook C19 Vax Adverse Reactions 128
Reddit Post Vax 51
Facebook Canadian Vccn 39
SickAndAbandoned.com + LongHaulWiki.com 33
Twitter 32
Unknown 18
Facebook Long COVID 17
Discord 9
Health Rising forums 7
Word of mouth 6
Whatsapp 3
Facebook VASE family 1
Instagram 1

Please note that the recruitment strategy for this survey was quite different than previous surveys such as the Risk Factors Survey. (Data on the Risk Factors survey's recruitment can be found on slide 68 here: http://sickandabandoned.com/wp-content/uploads/2023/06/SAA-Risk-Factors-Survey-FULL.pdf )

This survey did not have participants from the two largest vaccine injured Facebook groups.

Sound and light sensitivity analyses¶

"No light sensitivity" = surveyee answered "None of the above". They may actually have light sensitivity but they did not select any of the avoidance behaviours in the checkboxes above.

The tables below show the percentage of each group that selected the checkbox.

The general trend is that avoidance behaviours increased with higher severity of the symptom; however, not all surveyees with the highest reported severity engaged in all of the avoidance behaviours.

Sunglasses Avoided outdoors Avoided bright environments No light sensitivity Earpro Avoided loud environments No sound sensitivity
Peak sound sensitivity
-1.0 0.121212 0.111111 0.131313 0.777778 0.050505 0.080808 0.888889
0.0 0.074074 0.185185 0.296296 0.629630 0.115385 0.153846 0.807692
1.0 0.228916 0.313253 0.530120 0.397590 0.301205 0.614458 0.301205
2.0 0.227723 0.356436 0.584158 0.326733 0.407767 0.757282 0.126214
3.0 0.314815 0.518519 0.712963 0.212963 0.495413 0.862385 0.082569
4.0 0.433333 0.666667 0.822222 0.066667 0.677778 0.877778 0.033333
Sunglasses Avoided outdoors Avoided bright environments No light sensitivity Earpro Avoided loud environments No sound sensitivity
Peak light sensitivity
-1.0 0.020833 0.062500 0.031250 0.927083 0.104167 0.208333 0.739583
0.0 0.054054 0.054054 0.135135 0.783784 0.222222 0.333333 0.583333
1.0 0.137931 0.241379 0.448276 0.448276 0.344828 0.563218 0.333333
2.0 0.277228 0.465347 0.673267 0.198020 0.349515 0.747573 0.184466
3.0 0.394495 0.596330 0.853211 0.100917 0.481818 0.818182 0.145455
4.0 0.546667 0.666667 0.840000 0.026667 0.680000 0.840000 0.053333

Using current sensivity versus peak sensitivity

Sunglasses Avoided outdoors Avoided bright environments No light sensitivity Earpro Avoided loud environments No sound sensitivity
Current sound sensitivity
-1.0 0.151515 0.151515 0.227273 0.666667 0.099237 0.198473 0.770992
0.0 0.181818 0.284091 0.477273 0.409091 0.250000 0.590909 0.329545
1.0 0.307018 0.464912 0.649123 0.289474 0.447368 0.763158 0.114035
2.0 0.333333 0.551724 0.747126 0.195402 0.622222 0.866667 0.055556
3.0 0.416667 0.604167 0.729167 0.145833 0.604167 0.854167 0.083333
4.0 0.400000 0.800000 0.850000 0.000000 0.700000 0.900000 0.000000
Sunglasses Avoided outdoors Avoided bright environments No light sensitivity Earpro Avoided loud environments No sound sensitivity
Current light sensitivity
-1.0 0.058824 0.125000 0.132353 0.801471 0.161765 0.286765 0.639706
0.0 0.159574 0.244681 0.436170 0.436170 0.294737 0.610526 0.336842
1.0 0.372881 0.466102 0.720339 0.177966 0.466102 0.728814 0.169492
2.0 0.405063 0.582278 0.784810 0.126582 0.525000 0.787500 0.137500
3.0 0.444444 0.800000 0.888889 0.044444 0.555556 0.866667 0.088889
4.0 0.500000 0.812500 0.875000 0.000000 0.687500 0.875000 0.000000 
Second column is peak light sensitivity.  There is a strong correlation between sound and light sensitivity.

Peak sound sensitivity
-1.0   -0.300000
 0.0    0.571429
 1.0    1.097561
 2.0    1.740385
 3.0    2.555556
 4.0    3.375000
Name: Peak light sensitivity, dtype: float64
-1 = do not have this symptom.  0 = minimal suffering.  4 = worst suffering imaginable

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: 0.89 | n =  85
Food intolerances 3-4 | Average (mean) score: 1.51 | n =  115

Food intolerances 2 or less | Average (mean) score: 0.89 | n =  90
Food intolerances 3-4 | Average (mean) score: 1.39 | n =  96

Food intolerances versus anti-histamines

Food intolerances 2 or less | Average (mean) score: 0.69 | n =  102
Food intolerances 3-4 | Average (mean) score: 0.6 | n =  82

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.

Food intolerances 2 or less | Average (mean) score: 0.6 | n =  15
Food intolerances 3-4 | Average (mean) score: 0.31 | n =  39

Those with the most severe food intolerances may respond differently to benzodiazepines, a drug often prescribed for Mast Cell Activation Syndrome (MCAS). Food intolerances are associated with MCAS.

Food intolerances 2 or less | Average (mean) score: 1.33 | n =  82
Food intolerances 3-4 | Average (mean) score: 0.92 | n =  59

Food intolerances versus low-dose naltrexone (LDN)

Food intolerances 2 or less | Average (mean) score: 1.05 | n =  85
Food intolerances 3-4 | Average (mean) score: 0.67 | n =  54

HBOT >1.5 ATA versus food intolerances. Note: low sample size.

Food intolerances 2 or less | Average (mean) score: 1.54 | n =  13
Food intolerances 3-4 | Average (mean) score: 1.5 | n =  12

Food intolerances versus OMAD

Food intolerances 2 or less | Average (mean) score: 0.35 | n =  68
Food intolerances 3-4 | Average (mean) score: 0.52 | n =  54

Food intolerances versus prescription blood thinners

Blood thinners versus blood clotting, bleeding disorders¶

Do those without blood clotting/bleeding disorders report better outcomes from blood thinning drugs?!

No clotting disorder | Average (mean) score: -0.33 | n =  24
Reported clotting disorder | Average (mean) score: 1.0 | n =  44

No bleeding disorder | Average (mean) score: 0.43 | n =  46
Reported bleeding disorder | Average (mean) score: 0.45 | n =  22

Pain versus pain drugs (opiates, other pain relievers)¶

Peak pain 2 or lower | Average (mean) score: 0.94 | n =  16
Peak pain 3 or higher | Average (mean) score: 0.88 | n =  42

Peak pain 2 or lower | Average (mean) score: 0.85 | n =  13
Peak pain 3 or higher | Average (mean) score: 0.21 | n =  43

Depression¶

Those who reported the most severe depression in their worst month of illness tended to report a higher rate of significant improvement.

No depression | Average (mean) score: 0.2 | n =  25
Peak depression 0-2 | Average (mean) score: -0.2 | n =  201
Peak depression 3-4 | Average (mean) score: -0.3 | n =  242

"Brain fog", memory problems, or cognitive difficulties.¶

SSRIs may be slightly more effective in those who report the most severe brain fog, memory problems, or cognitive difficulties???

However, SSRIs were among the lowest-rated treatments in this survey.

No cognitive difficulties | Average (mean) score: -0.38 | n =  8
Cognitive difficulties 0-3 | Average (mean) score: -0.4 | n =  166
Cognitive difficulties 4 | Average (mean) score: 0.2 | n =  88

No cognitive difficulties | Average (mean) score: 0.0 | n =  14
Cognitive difficulties 0-3 | Average (mean) score: -0.29 | n =  306
Cognitive difficulties 4 | Average (mean) score: -0.14 | n =  148

No cognitive difficulties | Average (mean) score: 0.67 | n =  6
Cognitive difficulties 0-3 | Average (mean) score: 1.13 | n =  82
Cognitive difficulties 4 | Average (mean) score: 0.78 | n =  41

Sleep issues¶

Benzodiazepines are sometimes prescribed for sleep issues.

(Ambien is also prescribed but there is too little data to perform a useful analysis.)

Sleep issues 3 or less | Average (mean) score: 1.0 | n =  86
Sleep issues 4 | Average (mean) score: 1.39 | n =  56

Beta blockers¶

No POTS or feeling faint when standing up | Average (mean) score: 0.55 | n =  20
POTS 0-3 | Average (mean) score: 0.6 | n =  63
POTS 4 | Average (mean) score: 0.75 | n =  51

POTS treatments¶

Compression garments / stockings

Drinking water before getting up in the morning

Sleeping with head of bed elevated

Increased intake of water and salt (Water and salt). *Note: surveyees may have misinterpreted this 'treatment', use caution when interpreting data.

Severity analysis¶

The severity score is the combination of the following:

  1. Ability to walk (0 to 2).
  • Only able to walk for less than 1 minute --> 2
  • Only able to walk for 1-4 minutes --> 1
  • Able to walk for 5 or more minutes --> 0
  1. Ability to work last job (0 to 3)
  • Unable to work --> 3
  • Only able to work part-time --> 2
  • Able to work full-time but only with accomodations --> 1
  • Able to work full-time --> 0
  1. Highest self-reported suffering on any symptom (-1 to 4)
  • 0 = doesn't bother me, 4 = worst suffering imaginable --> 0-4
  • -1 = don't have (any) symptoms

The combined score can range from -1 to 9.

Treatment outcomes based on change in severity score from worst month of illness to past 30 days¶

High recovery = An improvement of 2.0 or more

Low recovery = An improvement of 1.0 or less (includes worsening)

HBOT may be an outlier as there is a large difference between the high and low recovery groups.

Are patients not recovering because they didn't try the right treatments?¶

The chart below compares those with high levels of recovery versus those who little or no recovery. For the most part, both groups have tried the same treatments.

Among those who have fully or almost fully recovered, treatment response varies widely¶

The treatments below were chosen because surveyees had very different experiences with those treatments.

Severity demographics¶

Percentage with current symptom suffering rated 'worst suffering imaginable':  26.1 %   | 129 out of 494
Percentage who cannot currently walk more than 1 minute:  6.1 %   | 30 out of 494
Percentage who cannot work their old job:  38.3 %   | 189 out of 493

Level of improvement from worst month to past 30 days¶

In the chart below, there are 2 bars in between the x-axis labels 0" and "2". These bars are for 0 and 1. The labels on the x-axis correspond to the bar to the upper right of it.

Heatmap of severity during worst month versus severity during past 30 days¶

  • The first column corresponds to people who reported that they don't currently have any symptoms.
  • The second column corresponds to people who reported that none of their symptoms currently bother them.
  • The third column corresponds to people who report the some of their symptoms currently bother them. (None reported some impairment of walking or work ability.)
  • The column on the very right corresponds to people who report the highest (current) severity.

The numbers inside each box represent the number of people.

Some surveyees increased along the severity scale due to a worsening of their work ability. This may suggest that work ability is not that important to these surveyees because they did not rate the past 30 days as being the worst month of their illness.

14 responses were dropped (at the beginning of all analysis) as their peak severity score was 2 or less.
Please note that this skews the data towards lower recovery rates!

Number of people where severity score is available:  447

Questions for current severity were added later after some initial responses were collected.  Some people are missing severity scores because they didn't know how to answer the question about walking ability or because their worst month overlapped with the past 30 days.

Severity by chronic illness group¶

Severity score during worst month of illness
Long COVID         6.8 | n = 219
ME/CFS             7.1 | n = 25
Vaccine injured    7.0 | n = 281

Severity score for past 30 days
Long COVID         4.4 | n = 219
ME/CFS             5.1 | n = 25
Vaccine injured    4.7 | n = 281

Walking score for past 30 days (higher = greater impairment to walking ability)
Long COVID         0.2 | n = 219
ME/CFS             0.2 | n = 25
Vaccine injured    0.2 | n = 281

Working score for past 30 days (higher = greater impairment to working ability)
Long COVID         1.7 | n = 219
ME/CFS             2.3 | n = 25
Vaccine injured    1.8 | n = 281

Self-reported suffering for past 30 days (4 = greatest suffering imaginable)
Long COVID         2.6 | n = 219
ME/CFS             2.7 | n = 25
Vaccine injured    2.7 | n = 281

Peak severity score versus treatment outcomes¶

  • High severity = peak severity score 8 and above.
  • Low severity = peak severity score 7 and below.

Current (past 30 days) severity score versus treatment outcomes¶

Biological sex versus severity and recovery¶

Recovery, as measured by severity during worst month minus severity during the past 30 days

Severity during worst month of illness

Age versus severity¶

Additional analysis¶

What helped the most for people in pain?¶

Surprisingly, "Other pain relievers" ranked near the bottom of the list.

Pain severity from the worst month of illness was used.

Opiates were included but the sample size is small.

Number of data points for Opiates - 42  from the group  (pain is 3/4 on 0-4 scale)
Number of data points for Other pain relievers - 43  from the group  (pain is 3/4 on 0-4 scale)
Number of data points for Elavil - 23  from the group  (pain is 3/4 on 0-4 scale)
Number of data points for Doxepin - 15  from the group  (pain is 3/4 on 0-4 scale)
Number of data points for CBD with THC - 89  from the group  (pain is 3/4 on 0-4 scale)
Number of data points for CBD without THC - 84  from the group  (pain is 3/4 on 0-4 scale)
Number of data points for Opiates - 16  from the group  (pain 2 or less)
Number of data points for Other pain relievers - 13  from the group  (pain 2 or less)
Number of data points for Elavil - 7  from the group  (pain 2 or less)
Number of data points for Doxepin - 16  from the group  (pain 2 or less)
Number of data points for CBD with THC - 68  from the group  (pain 2 or less)
Number of data points for CBD without THC - 57  from the group  (pain 2 or less)

What helped the most for people with food intolerances?¶

Severity from the worst month of illness was used.

Number of data points for Other antihistamines - 15  from the group  (food intolerances is 3/4 on 0-4 scale)
Number of data points for Hydroxyzine - 22  from the group  (food intolerances is 3/4 on 0-4 scale)
Number of data points for DAO - 39  from the group  (food intolerances is 3/4 on 0-4 scale)
Number of data points for Clarinex - 15  from the group  (food intolerances is 3/4 on 0-4 scale)
Number of data points for Acrivastine - 22  from the group  (food intolerances is 3/4 on 0-4 scale)
Number of data points for Carnivore diet - 17  from the group  (food intolerances is 3/4 on 0-4 scale)
Number of data points for Benzodiazepines - 59  from the group  (food intolerances is 3/4 on 0-4 scale)
Number of data points for LDN - 54  from the group  (food intolerances is 3/4 on 0-4 scale)
Number of data points for Cromolyn - 18  from the group  (food intolerances is 3/4 on 0-4 scale)
Number of data points for Low histamine diet - 115  from the group  (food intolerances is 3/4 on 0-4 scale)
Number of data points for Glutenfree diet - 96  from the group  (food intolerances is 3/4 on 0-4 scale)
Number of data points for Other antihistamines - 19  from the group  (food intolerances 2 or less)
Number of data points for Hydroxyzine - 23  from the group  (food intolerances 2 or less)
Number of data points for DAO - 15  from the group  (food intolerances 2 or less)
Number of data points for Clarinex - 4  from the group  (food intolerances 2 or less)
Number of data points for Acrivastine - 24  from the group  (food intolerances 2 or less)
Number of data points for Carnivore diet - 15  from the group  (food intolerances 2 or less)
Number of data points for Benzodiazepines - 82  from the group  (food intolerances 2 or less)
Number of data points for LDN - 85  from the group  (food intolerances 2 or less)
Number of data points for Cromolyn - 4  from the group  (food intolerances 2 or less)
Number of data points for Low histamine diet - 85  from the group  (food intolerances 2 or less)
Number of data points for Glutenfree diet - 90  from the group  (food intolerances 2 or less)

What helped the most for people with POTS or OI?¶

POTS = Postural Orthostatic Tachycardia Syndrome

OI = Orthostatic Intolerance

Severity from the worst month of illness was used.

Number of data points for Colchicine - 16  from the group  (POTS OI is 3/4 on 0-4 scale)
Number of data points for Compression garments - 110  from the group  (POTS OI is 3/4 on 0-4 scale)
Number of data points for Water and salt - 174  from the group  (POTS OI is 3/4 on 0-4 scale)
Number of data points for Drinking water - 96  from the group  (POTS OI is 3/4 on 0-4 scale)
Number of data points for Sleeping with head of bed elevated - 80  from the group  (POTS OI is 3/4 on 0-4 scale)
Number of data points for Beta blockers - 81  from the group  (POTS OI is 3/4 on 0-4 scale)
Number of data points for Guanfacine - 13  from the group  (POTS OI is 3/4 on 0-4 scale)
Number of data points for Colchicine - 16  from the group  (POTS OI 2 or less)
Number of data points for Compression garments - 49  from the group  (POTS OI 2 or less)
Number of data points for Water and salt - 96  from the group  (POTS OI 2 or less)
Number of data points for Drinking water - 53  from the group  (POTS OI 2 or less)
Number of data points for Sleeping with head of bed elevated - 52  from the group  (POTS OI 2 or less)
Number of data points for Beta blockers - 53  from the group  (POTS OI 2 or less)
Number of data points for Guanfacine - 9  from the group  (POTS OI 2 or less)

What helped the most for people with cognitive difficulties / brain fog / memory problems?¶

Severity from the worst month of illness was used.

Number of data points for Ivermectin - 83  from the group  (cognitive difficulties is 3/4 on 0-4 scale)
Number of data points for Fluvoxamine - 18  from the group  (cognitive difficulties is 3/4 on 0-4 scale)
Number of data points for Benzodiazepines - 90  from the group  (cognitive difficulties is 3/4 on 0-4 scale)
Number of data points for Prozac - 31  from the group  (cognitive difficulties is 3/4 on 0-4 scale)
Number of data points for Ivermectin - 46  from the group  (cognitive difficulties 2 or less)
Number of data points for Fluvoxamine - 6  from the group  (cognitive difficulties 2 or less)
Number of data points for Benzodiazepines - 49  from the group  (cognitive difficulties 2 or less)
Number of data points for Prozac - 9  from the group  (cognitive difficulties 2 or less)

What helped the most for people with sleep issues?¶

Severity from the worst month of illness was used.

Number of data points for Benzodiazepines - 92  from the group  (sleep issues are 3/4 on 0-4 scale)
Number of data points for Ambien - 22  from the group  (sleep issues are 3/4 on 0-4 scale)
Number of data points for Benzodiazepines - 50  from the group  (sleep issues 2 or less)
Number of data points for Ambien - 7  from the group  (sleep issues 2 or less)

What helped the most for people with depression?¶

Severity from the worst month of illness was used.

What helped the most for people with bleeding disorders?¶

PLEASE NOTE: The sample sizes are VERY SMALL for this analysis. You should assume that the chart below is highly unreliable.

Severity from the worst month of illness was used.

What helped the most for people with clotting disorders (too much clotting)?¶

Severity from the worst month of illness was used.

Do some people fail on one H1 blocker and succeed with another?¶

Loratadine (Claritin), fexofenadine (Allegra), cetirizine (Zyrtec, Benadryl Allergy One a Day Relief 🇬🇧), levocetirizine (Xyzal) and acrivastine (Benadryl Allergy Relief 🇬🇧) are H1 blockers that are sold over-the-counter in many countries.

Responders are defined as surveyees who answered either significant or mild improvement. The chart below compares pairings of some popular anti-histamines. Each row represents a group of people who failed a particular treatment/intervention (or reported that the effect was unclear). Each column represents the chances of responding to that particular intervention.

The bracketed numbers (1234) indicate the total number of people who did not respond to the treatment/intervention ('failed').

Zyrtec Claritin Allegra Acrivastine Pepcid (H2 blocker)
Zyrtec failed 8.6% (58) 11.4% (35) 10.5% (19) 15.0% (60)
Claritin failed 17.2% (64) 16.7% (36) 33.3% (18) 21.6% (51)
Allegra failed 16.2% (37) 6.2% (32) 22.2% (9) 22.6% (31)
Acrivastine failed 10.5% (19) 14.3% (14) 12.5% (8) 15.4% (13)
Pepcid (H2 blocker) failed 13.6% (59) 9.1% (44) 11.1% (27) 15.4% (13)

Do some people succeed on one diet but fail to respond with another?¶

7 diets compared

Low histamine diet Glutenfree diet Plant based diet Vegan diet Carnivore diet Keto diet Anti inflammatory diet
Low histamine diet failed 9.5% (42) 4.3% (23) 7.1% (14) 12.5% (8) 33.3% (18) 20.0% (25)
Glutenfree diet failed 11.6% (43) 0.0% (21) 7.1% (14) 0.0% (7) 35.7% (14) 15.8% (19)
Plant based diet failed 29.0% (31) 32.3% (31) 0.0% (21) 0.0% (5) 40.0% (10) 29.4% (17)
Vegan diet failed 27.8% (18) 40.9% (22) 4.5% (22) 20.0% (5) 66.7% (6) 62.5% (8)
Carnivore diet failed 22.2% (9) 22.2% (9) 28.6% (7) 33.3% (6) 0.0% (7) 33.3% (6)
Keto diet failed 40.0% (20) 43.8% (16) 45.5% (11) 50.0% (4) 0.0% (7) 20.0% (10)
Anti inflammatory diet failed 13.0% (23) 15.8% (19) 7.7% (13) 25.0% (4) 0.0% (4) 0.0% (8)

All diets compared

Low histamine diet Glutenfree diet Plant based diet Vegan diet AIP diet Wahls protocol Paleo diet Carnivore diet Keto diet Anti inflammatory diet Other diet
Low histamine diet failed 9.5% (42) 4.3% (23) 7.1% (14) 0.0% (8) 0.0% (1) 0.0% (2) 12.5% (8) 33.3% (18) 20.0% (25) 50.0% (6)
Glutenfree diet failed 11.6% (43) 0.0% (21) 7.1% (14) 22.2% (9) 0.0% (3) 0.0% (1) 0.0% (7) 35.7% (14) 15.8% (19) 50.0% (2)
Plant based diet failed 29.0% (31) 32.3% (31) 0.0% (21) 20.0% (5) 0.0% (2) 33.3% (3) 0.0% (5) 40.0% (10) 29.4% (17) 50.0% (6)
Vegan diet failed 27.8% (18) 40.9% (22) 4.5% (22) 20.0% (5) 0.0% (2) 33.3% (3) 20.0% (5) 66.7% (6) 62.5% (8) 75.0% (4)
AIP diet failed 27.3% (11) 36.4% (11) 20.0% (5) 0.0% (4) 0.0% (2) 50.0% (2) 40.0% (5) 0.0% (4) 16.7% (6) 66.7% (3)
Wahls protocol failed 50.0% (2) 25.0% (4) 0.0% (2) 0.0% (2) 0.0% (2) 50.0% (2) 0.0% (1) 0.0% (1) 0.0% (1) N/A
Paleo diet failed 33.3% (3) 66.7% (3) 33.3% (3) 33.3% (3) 50.0% (2) 0.0% (1) 0.0% (3) 0.0% (2) 66.7% (3) 100.0% (2)
Carnivore diet failed 22.2% (9) 22.2% (9) 28.6% (7) 33.3% (6) 25.0% (4) 0.0% (1) 0.0% (3) 0.0% (7) 33.3% (6) 100.0% (2)
Keto diet failed 40.0% (20) 43.8% (16) 45.5% (11) 50.0% (4) 20.0% (5) 0.0% (1) 0.0% (2) 0.0% (7) 20.0% (10) 50.0% (2)
Anti inflammatory diet failed 13.0% (23) 15.8% (19) 7.7% (13) 25.0% (4) 0.0% (5) 0.0% (1) 0.0% (1) 0.0% (4) 0.0% (8) 14.3% (7)
Other diet failed 25.0% (4) 50.0% (2) 25.0% (4) 50.0% (2) 0.0% (1) N/A N/A N/A 0.0% (1) 0.0% (6)

Sex differences in treatment outcomes?¶

People who did not report worsening from intense exercise¶

These surveyees may be reporting slightly lower recovery (than those who reported negative outcomes from intense exericse). (Results may not necessarily be statistically significant.)

Reported improvement or not much benefit/harm from intense exercise: 61
Exercise responders peak sev: 6.1
Exercise responders curr sev: 3.5
Improvement:                  2.6

Reported worsening from exercise: 182
Not exercise responders peak sev 7.3
Not exercise responders curr sev 5.0
Improvement:                     2.2

Ivermectin non-responders (versus responders)¶

What treatments seemed to work well in the non-responders?

Treatment rankings for ivermectin non-responders

Treatments with more than 25 data points Score Risk score # of data points (out of 54 surveyees)
1 [Pacing strategies] 1.11 0.00 27
2 [Meditation] 1.03 0.00 30
3 [LDN] 0.92 -0.15 26
4 [Low histamine diet] 0.89 0.00 27
5 [Avoiding exercise] 0.72 -0.16 32
6 [Magnesium] 0.67 -0.13 45
7 [Zyrtec] 0.61 -0.04 28
8 [Glutathione] 0.48 -0.11 27
9 [Nattokinase] 0.44 -0.03 36
10 [NAC] 0.44 -0.12 32
11 [Aspirin] 0.44 -0.03 32
12 [Serrapeptase] 0.43 0.00 28
13 [Time] 0.41 -0.51 51
14 [Probiotics prebiotics] 0.40 -0.14 35
15 [Melatonin] 0.40 -0.20 30
16 [Advil] 0.39 -0.03 36
17 [Curcumin] 0.36 -0.05 39
18 [Vitamin D] 0.35 -0.13 46
19 [Vitamin C] 0.29 -0.08 38
20 [Quercetin] 0.29 -0.05 41
21 [Fish oil etc.] 0.26 -0.03 34
22 [Intermittent fasting] 0.23 -0.15 26
23 [Zinc] 0.21 -0.18 38
24 [CoQ10] 0.19 0.00 27
25 [Multivitamin] 0.19 -0.12 26
26 [B vitamins] 0.10 -0.18 40
27 [Celexa, Lexapro, Fluvoxamine, Prozac, Paxil, ... -0.24 -0.63 38
28 [Tetracyclines, Fluoroquinolones, Penicillins,... -0.32 -0.75 44
29 [Ivermectin] -0.33 -0.33 54
30 [Light exercise] -1.00 -1.26 39
31 [Intense exercise] -1.89 -2.04 28

Worsened on corticosteroids versus non-failures¶

Failure is not the same as a non-responder. Worsening/failure is defined as somebody who reported worsening; it does NOT include 'unsure' and 'not much benefit/harm'

Note that the sample sizes are fairly small, so this analysis is likely unreliable.

HBOT - high ATA versus low ATA¶

Data from surveyees who tried both high and low ATA HBOT:

HBOT <=1.5 ATA HBOT >1.5 ATA Difference?
1 Mild improvement Mild improvement
2 Mild improvement Significant improvement Mild improvement | Significant improvement
3 Mild improvement Significant improvement Mild improvement | Significant improvement
4 Mild improvement Mild improvement
5 Significant improvement Significant improvement

Those who try only low ATA HBOT versus those who try only high ATA HBOT¶

It seems that those who try only low ATA HBOT tend to rate treatments more favorably than people who try only high ATA HBOT.

This bias might even understate the difference in outcomes between high and low ATA HBOT.

Treatments with more than 6 data points Score Risk score # of data points (out of 20 surveyees)
1 ['Prayer'] 2.00 0.00 7
2 ['Time'] 1.65 -0.12 17
3 ['Glutenfree diet'] 1.43 0.00 7
4 ['Low histamine diet'] 1.36 0.00 11
5 ['Vitamin D'] 1.36 -0.07 14
6 ['HBOT <=1.5 ATA', 'HBOT >1.5 ATA'] 1.35 -0.20 20
7 ['Benzodiazepines'] 1.29 -0.29 7
8 ['Meditation'] 1.12 0.00 8
9 ['Pacing strategies'] 1.12 0.00 8
10 ['Intermittent fasting'] 1.12 0.00 8
11 ['Avoiding exercise'] 1.11 0.00 9
12 ['LDN'] 1.08 -0.31 13
13 ['B vitamins'] 0.93 -0.14 14
14 ['Tetracyclines', 'Fluoroquinolones', 'Penicil... 0.90 -0.14 21
15 ['CBT'] 0.89 0.00 9
16 ['Magnesium'] 0.85 -0.08 13
17 ['Water and salt'] 0.80 0.00 10
18 ['Glutathione'] 0.73 0.00 11
19 ['K vitamins'] 0.71 -0.14 7
20 ['ALA'] 0.71 0.00 7
21 ['Fish oil etc.'] 0.67 0.00 12
22 ['CBD with THC'] 0.62 -0.25 8
23 ['Zinc'] 0.60 -0.10 10
24 ['Claritin'] 0.60 -0.10 10
25 ['Aspirin'] 0.58 -0.08 12
26 ['Zyrtec'] 0.56 -0.11 9
27 ['Light exercise'] 0.50 -0.75 12
28 ['CoQ10'] 0.44 -0.11 9
29 ['Melatonin'] 0.44 -0.44 9
30 ['Curcumin'] 0.42 -0.08 12
31 ['Nattokinase'] 0.38 -0.23 13
32 ['Acupuncture'] 0.38 -0.38 8
33 ['Compression garments'] 0.33 0.00 9
34 ['Vitamin C'] 0.33 -0.25 12
35 ['Serrapeptase'] 0.29 -0.43 7
36 ['NAC'] 0.25 -0.38 8
37 ['Celexa', 'Lexapro', 'Fluvoxamine', 'Prozac',... 0.25 -0.45 20
38 ['Probiotics prebiotics'] 0.17 -0.42 12
39 ['Multivitamin'] 0.11 -0.44 9
40 ['Quercetin'] 0.10 -0.10 10
41 ['Pepcid'] 0.00 -0.36 11
42 ['Tylenol'] -0.14 -0.14 7
43 ['Allegra'] -0.29 -0.57 7
44 ['Intense exercise'] -0.56 -1.33 9

Prayer analysis¶

Did those who reported positive outcomes from prayer have roughly the same change in severity as those who did not?

-- Change in severity score (-2 to +10, higher is more recovery) --
Significant improvement from prayer           2.35
Mild improvement from prayer                  2.35
Not much improvement or worsening             1.9

Tried prayer                                  2.18
Did not try prayer                            2.32

Number of successful treatments versus non-successful treatments¶

The chart below plots # of successful treatments on the y-axis and the number of non-successful treatments on the x-axis.

Non-successful includes 'effect unclear' and 'Not much benefit/harm'

A histogram plot of the # of succcessful treatments reported

A histogram plot of the # of non-succcessful treatments reported

Number of treatments with significant improvement versus treatments without significant improvement¶

The chart below plots # of highly successful treatments on the y-axis and the number of other treatments on the x-axis.

The lower number of treatments tried among the lowest (current) severity patients may be partially explained by those patients being less severe (lower peak severity score)...?

Number of treatments tried
Peak severity score
3.0 26.125000
4.0 24.566667
5.0 28.607843
6.0 28.939394
7.0 31.117647
8.0 33.670588
9.0 36.265487

The same histogram, but only of those who mostly recovered

Data on what treatments led to recovery AND the surveyee rating the treatment as leading to 'significant improvement'¶

Among those who mostly recovered (36/459 people), these treatments were rated by some as leading to 'Significant improvement'

Severity/recovery data was available for 459 people

Vaccine injured    245
Long COVID         192
ME/CFS              22
Name: Chronic illness, dtype: int64
The mostly recovered consisted of the following chronic illness types:

Vaccine injured    20
Long COVID         16
Name: Chronic illness, dtype: int64
8.16% of vaccine injured with severity data are mostly recovered.
8.33% of Long COVID with severity data are mostly recovered.

Important note for the next set of analyses¶

14 responses were dropped (at the beginning of all analysis) as their peak severity score was 2 or less.
Please note that this skews the data towards lower recovery rates and lower recovery numbers!

All 235 treatments surveyed¶

The most important column is the third column, which are the people who rated a treatment highly ('significant improvement') AND were mostly recovered. Anything less than ~1.17% may be worse than random.

The second most important column is the first column (Count), which is the total number of successes. If the count is only 1, then the data may not be very reliable due to the small sample sizes involved.

The 2nd and 4th columns indicate the popularity of all the treatments.

Count % of surveyees (with recovery data) who tried this % (of those who tried this) who mostly recovered AND reported significant improvement from this treatment Number who tried this treatment
Time 21 89.5 5.1 411
Vitamin D 3 74.7 0.9 343
Magnesium 4 70.4 1.2 323
B vitamins 4 68.2 1.3 313
Light exercise 3 65.8 1.0 302
Vitamin C 2 61.4 0.7 282
Avoiding exercise 4 60.8 1.4 279
Curcumin 1 54.7 0.4 251
Water and salt 2 52.7 0.8 242
Fish oil etc. 0 51.9 0.0 238
Probiotics prebiotics 2 51.6 0.8 237
Zinc 3 51.4 1.3 236
Meditation 3 49.2 1.3 226
Intense exercise 3 49.2 1.3 226
Advil 1 49.2 0.4 226
NAC 2 47.3 0.9 217
Pacing strategies 3 46.8 1.4 215
Melatonin 0 46.2 0.0 212
Quercetin 1 46.0 0.5 211
Multivitamin 0 43.8 0.0 201
Aspirin 2 43.8 1.0 201
Tylenol 0 42.7 0.0 196
Nattokinase 5 42.3 2.6 194
Intermittent fasting 3 41.0 1.6 188
CoQ10 1 40.7 0.5 187
Low histamine diet 4 40.5 2.2 186
Zyrtec 0 38.3 0.0 176
Glutenfree diet 3 36.8 1.8 169
Massage 1 33.8 0.6 155
Acupuncture 1 32.5 0.7 149
Compression garments 0 32.5 0.0 149
Other NSAID 3 31.8 2.1 146
Pepcid 0 31.4 0.0 144
CBD with THC 0 31.2 0.0 143
Claritin 1 30.9 0.7 142
Drinking water 1 30.3 0.7 139
Prayer 3 29.8 2.2 137
Glutathione 0 28.8 0.0 132
CBT 0 28.8 0.0 132
CBD without THC 0 28.5 0.0 131
Ashwagandha 1 27.7 0.8 127
Beta blockers 0 27.0 0.0 124
LDN 5 27.0 4.0 124
Corticosteroids 4 26.8 3.3 123
K vitamins 1 26.8 0.8 123
Sleeping with head of bed elevated 0 26.4 0.0 121
Benzodiazepines 1 26.1 0.8 120
Graded exercise therapy 3 24.8 2.6 114
Resveratrol 1 24.8 0.9 114
OMAD 3 24.6 2.7 113
Count % of surveyees (with recovery data) who tried this % (of those who tried this) who mostly recovered AND reported significant improvement from this treatment Number who tried this treatment
Ivermectin 5 23.7 4.6 109
ALA 0 23.5 0.0 108
Benadryl 0 22.2 0.0 102
Serrapeptase 5 22.0 5.0 101
VNS 2 21.4 2.0 98
Lion's mane 1 19.8 1.1 91
Dandelion 1 19.4 1.1 89
Gabapentin 1 19.4 1.1 89
Plant based diet 0 17.4 0.0 80
Chiropractic 1 17.2 1.3 79
24-48 hour fasting 0 17.0 0.0 78
NADH 0 16.6 0.0 76
Anti inflammatory diet 1 16.3 1.3 75
Allegra 0 15.5 0.0 71
Red light therapy 0 15.3 0.0 70
Augmented NAC 1 15.0 1.4 69
Homeopathy 0 12.9 0.0 59
Keto diet 1 12.4 1.8 57
Diazepam 1 12.4 1.8 57
Other muscle relaxers 0 12.2 0.0 56
Pine needle tea 0 11.8 0.0 54
Nigella sativa capsules 1 11.8 1.9 54
Lexapro 1 11.5 1.9 53
DAO 0 11.3 0.0 52
IV vitamins 0 11.3 0.0 52
Nigella sativa oil 1 11.3 1.9 52
Infrared sauna 0 11.3 0.0 52
Wim Hof with cold 0 11.1 0.0 51
EMDR 1 10.9 2.0 50
Opiates 0 10.7 0.0 49
Other brain retraining 2 10.5 4.2 48
Dry cupping 0 10.5 0.0 48
Lavender 0 10.5 0.0 48
Oil of oregano 0 10.2 0.0 47
Lumbrokinase 0 10.2 0.0 47
Statins 2 10.0 4.3 46
Other diet 0 10.0 0.0 46
Patches 1 9.6 2.3 44
Other pain relievers 0 9.6 0.0 44
Wellbutrin 0 9.6 0.0 44
Psychedelic mushrooms 0 9.6 0.0 44
Acrivastine 0 9.6 0.0 44
Antiseizure 0 9.4 0.0 43
Hydroxyzine 0 9.2 0.0 42
Montekulast 0 8.9 0.0 41
Penicillins 0 8.9 0.0 41
Tetracyclines 1 8.7 2.5 40
Osteopathy 0 8.5 0.0 39
Zeolite 0 8.5 0.0 39
Valtrex 1 8.5 2.6 39
Count % of surveyees (with recovery data) who tried this % (of those who tried this) who mostly recovered AND reported significant improvement from this treatment Number who tried this treatment
Seroquel 0 8.3 0.0 38
Vegan diet 0 8.1 0.0 37
Multiday wet fasting 1 7.8 2.8 36
Cigarettes 0 7.8 0.0 36
Other TCM 1 7.8 2.8 36
IV vitamin C 0 7.6 0.0 35
Plaquenil 1 7.6 2.9 35
Traditional sauna 0 7.4 0.0 34
Effexor 0 7.2 0.0 33
Cymbalta 0 7.2 0.0 33
Remeron 0 7.2 0.0 33
Zoloft 0 7.2 0.0 33
AIP diet 1 7.2 3.0 33
Monolaurin 0 7.0 0.0 32
Vaping 0 7.0 0.0 32
Wim Hof without cold 1 6.8 3.2 31
Paxlovid 0 6.5 0.0 30
Activated charcoal 0 6.5 0.0 30
Prozac 0 6.5 0.0 30
Carnivore diet 1 6.3 3.4 29
Xyzal 0 6.3 0.0 29
Spermidine 0 6.3 0.0 29
Ambien 0 6.1 0.0 28
Doxepin 1 6.1 3.6 28
Bentonite clay 0 6.1 0.0 28
Colchicine 2 5.9 7.4 27
Elavil 0 5.9 0.0 27
Other antihistamines 0 5.9 0.0 27
Ketotifen 0 5.7 0.0 26
Metformin 0 5.4 0.0 25
Methylene blue 1 5.4 4.0 25
Fluconazole 0 5.2 0.0 24
HBOT <=1.5 ATA 0 5.2 0.0 24
HBOT >1.5 ATA 2 5.0 8.7 23
Guanfacine 0 4.8 0.0 22
St. John's Wort 1 4.8 4.5 22
Other nicotine 0 4.8 0.0 22
Cat's claw 2 4.4 10.0 20
Nystatin 0 4.4 0.0 20
Fluoroquinolones 0 4.4 0.0 20
IV ozone 0 4.4 0.0 20
Aciclovir 1 4.4 5.0 20
Fluvoxamine 0 4.1 0.0 19
Cromolyn 0 4.1 0.0 19
Paleo diet 1 4.1 5.3 19
Clopidogrel 1 3.9 5.6 18
TRT 1 3.9 5.6 18
Other antifungal 0 3.9 0.0 18
Multiday juice fasting 0 3.9 0.0 18
Clarinex 0 3.9 0.0 18
Count % of surveyees (with recovery data) who tried this % (of those who tried this) who mostly recovered AND reported significant improvement from this treatment Number who tried this treatment
Antibiotic unknown type 0 3.7 0.0 17
Abilify 0 3.7 0.0 17
Heparin 0 3.5 0.0 16
Mestinon 0 3.5 0.0 16
Eliquis 1 3.3 6.7 15
DNRS 0 3.1 0.0 14
Pamelor 1 3.1 7.1 14
Macrolides 0 3.1 0.0 14
Chlorine dioxide 0 2.8 0.0 13
Quantum healing 0 2.8 0.0 13
Multiday dry fasting 1 2.8 7.7 13
Gupta program 0 2.8 0.0 13
Celexa 0 2.8 0.0 13
Other chelation 0 2.6 0.0 12
Metronidazole 0 2.6 0.0 12
Rife 0 2.6 0.0 12
Methotextrate 0 2.4 0.0 11
NIBS 0 2.4 0.0 11
IVIG 0 2.4 0.0 11
Wahls protocol 0 2.2 0.0 10
DMARD 0 2.2 0.0 10
Photobiomodulation 0 2.2 0.0 10
Ayurveda 0 2.2 0.0 10
Maraviroc 1 2.2 10.0 10
Clindamycin 0 2.2 0.0 10
SGB 0 2.0 0.0 9
Canesten 0 2.0 0.0 9
ASEA Redox 1 2.0 11.1 9
Sulfonamides 0 2.0 0.0 9
Nigella sativa seed 0 1.7 0.0 8
Other antibiotic 0 1.7 0.0 8
Tollovid 1 1.7 12.5 8
Root wellness 0 1.7 0.0 8
Paxil 0 1.7 0.0 8
Biologic 0 1.7 0.0 8
Xarelto 0 1.7 0.0 8
Vedicinals9 0 1.7 0.0 8
Monoclonals 0 1.7 0.0 8
Cephalosporins 0 1.5 0.0 7
Frequency wand 0 1.5 0.0 7
HELP apheresis 1 1.5 14.3 7
EDTA 0 1.5 0.0 7
Biocidin 0 1.3 0.0 6
Red yeast rice 0 1.3 0.0 6
Ketoconazole 0 1.3 0.0 6
TWC detox 0 1.3 0.0 6
Nitrofurantoin 0 1.3 0.0 6
Cardio Miracle 1 1.1 20.0 5
Doxylamine 0 1.1 0.0 5
Famciclovir 1 0.9 25.0 4
Count % of surveyees (with recovery data) who tried this % (of those who tried this) who mostly recovered AND reported significant improvement from this treatment Number who tried this treatment
Lightning process 0 0.9 0.0 4
EBOO 0 0.9 0.0 4
Alinia 0 0.9 0.0 4
Stem cells 2 0.9 50.0 4
Bilastine 0 0.7 0.0 3
Urotherapy 0 0.7 0.0 3
Molnupiravir 0 0.7 0.0 3
Clomipramine 0 0.7 0.0 3
Sulodexide 0 0.7 0.0 3
Kangen water 0 0.7 0.0 3
Terbinafine 0 0.4 0.0 2
DTPA 0 0.4 0.0 2
Vortioxetine 0 0.4 0.0 2
Immunoadsorption 0 0.4 0.0 2
Ebastine 0 0.4 0.0 2
Rapamycin 0 0.4 0.0 2
Valcyte 0 0.4 0.0 2
Inuspheresis 0 0.4 0.0 2
PLEX 0 0.4 0.0 2
Favipiravir 0 0.4 0.0 2
Econazole 0 0.2 0.0 1
Avacen 0 0.2 0.0 1
Wet cupping 0 0.2 0.0 1
Mizolastine 0 0.2 0.0 1
Amphotericin 0 0.2 0.0 1
Seldane 0 0.2 0.0 1
Semprex D 0 0.2 0.0 1
SCIG 0 0.2 0.0 1
Miconazole 0 0.2 0.0 1
Astemizole 0 0.2 0.0 1
Quifenadine 0 0.2 0.0 1
Rupatadine 0 0.2 0.0 1
HCG 0 0.2 0.0 1
Aminoglycosides 0 0.0 NaN 0
Bepotastine 0 0.0 NaN 0

Spreadsheet version of the table above¶

Click here for the spreadsheet.

If you just want to see the table (without being able to edit it), see here.

The spreadsheet will let you conveniently sort and filter the data so that you can get a better picture of how treatments stack up.

Answers to "What was the one treatment (or combination of treatments) that helped you the most?"¶

Please visit https://forum.sickandabandoned.com/t/what-treatments-helped-the-most-some-prelim-patient-experiences-survey-data/351 for that analysis with some commentary.

Dec 26, 2023 analysis¶

The most frequently cited treatments were:

  • Fasting (different forms) - 6
  • Ivermectin - 3
  • NAC - 3
    • Note that about half of the people on the survey tried NAC. After adjusting for popularity, it may not be as good as it first appears (e.g. 1% success rate).
  • Exercise - 2
    • Exercise was even more popular than NAC, so interpret with caution. Most people respond negatively to exercise, even if it is light.
  • Nattokinase - 3
  • HBOT - 2
  • Time - 4, no answer/treatment - 5

The treatments were all over the place.

Post vax responses¶

  • ASEA redox, ivermectin.
  • Aviv HBoT 3-month protocol. *Aviv likely refers to this chain of clinics: https://aviv-clinics.com/
  • Chlorella *Type of algae that grows in fresh water.
  • Drug protocol of Maraviroc, Statin and Plavix
  • Dry fasting 72 hrs
  • Fasting *This person rated 24-48 hour fasting and Multiday juice fasting as mild improvement. Did not try multiday wet/dry fasting.
  • Fasting in combination with a well sourced (local farm) carnivore diet.
  • Getting covid for the first time (year after vaccine doses)
  • Guaifenesin (OTC cough medicine), nattokinase, Resveratrol
  • Ivermectin
  • Ivermectin, NAC, nattokinase, cardio miracle
  • LDN, methylene blue and chlorine dioxide
  • NAC and Bromelain together
  • Nattokinase and Serrapeptase
  • Nicotine, [Augmented/Quantum] NAC and fasting
  • Paleo/keto diet.
  • Rest, custom liquid herbal tinctures/supplements and low histamine diet.
  • Vitamin b1
  • No treatment (helped the most)

Long COVID responses¶

  • 18 day water only fast
  • Antivirals and anti-inflammatory meds
  • Consistent gentle exercise and supplements.
  • Exercise and time
  • HBOT (above 1.5 ATA), LDN, physical therapy
  • Hope Biosciences stem cells + vision rehab therapy (concussion protocol)
  • Magnesium, black seed oil
  • Rest
  • Somatic Experiencing, somatic touch work, Electrolytes
  • Time X 2
  • Triple anti-coagulant therapy, HELP apheresis
  • [No answer] X 4

Treatments that likely do not work¶

Here are the top 60 where no patients became mostly recovered. In other words, these are treatments with the most evidence of ineffectiveness.

459 people had valid severity data.
% of surveyees (with recovery data) who tried this % (of those who tried this) who mostly recovered AND reported significant improvement from this treatment
Fish oil etc. 51.9 0.0
Melatonin 46.2 0.0
Multivitamin 43.8 0.0
Tylenol 42.7 0.0
Zyrtec 38.3 0.0
Compression garments 32.5 0.0
Pepcid 31.4 0.0
CBD with THC 31.2 0.0
Glutathione 28.8 0.0
CBT 28.8 0.0
CBD without THC 28.5 0.0
Beta blockers 27.0 0.0
Sleeping with head of bed elevated 26.4 0.0
ALA 23.5 0.0
Benadryl 22.2 0.0
Plant based diet 17.4 0.0
24-48 hour fasting 17.0 0.0
NADH 16.6 0.0
Allegra 15.5 0.0
Red light therapy 15.3 0.0
Homeopathy 12.9 0.0
Other muscle relaxers 12.2 0.0
Pine needle tea 11.8 0.0
DAO 11.3 0.0
IV vitamins 11.3 0.0
Infrared sauna 11.3 0.0
Wim Hof with cold 11.1 0.0
Opiates 10.7 0.0
Lavender 10.5 0.0
Dry cupping 10.5 0.0
Lumbrokinase 10.2 0.0
Oil of oregano 10.2 0.0
Other diet 10.0 0.0
Wellbutrin 9.6 0.0
Acrivastine 9.6 0.0
Other pain relievers 9.6 0.0
Psychedelic mushrooms 9.6 0.0
Antiseizure 9.4 0.0
Hydroxyzine 9.2 0.0
Penicillins 8.9 0.0
Montekulast 8.9 0.0
Osteopathy 8.5 0.0
Zeolite 8.5 0.0
Seroquel 8.3 0.0
Vegan diet 8.1 0.0
Cigarettes 7.8 0.0
IV vitamin C 7.6 0.0
Traditional sauna 7.4 0.0
Effexor 7.2 0.0
Cymbalta 7.2 0.0
Zoloft 7.2 0.0
Remeron 7.2 0.0
Monolaurin 7.0 0.0
Vaping 7.0 0.0
Activated charcoal 6.5 0.0
Paxlovid 6.5 0.0
Prozac 6.5 0.0
Spermidine 6.3 0.0
Xyzal 6.3 0.0
Bentonite clay 6.1 0.0

Do the more pessimistic/realistic surveyees have a different ranking of treatments?¶

'Realists'/'pessimists' are defined as people who reported more than 2 non-successful treatments for every successful treatment.

Number of realists/pessimists: 151
All surveyees: 525

Rankings from realists are shown below:

Symptom cluster analysis¶

Hierarchical clustering was used to try to find potential phenotypes of chronic illness. In this situation, it is unlikely that the analysis found a distinct phenotype. In my experience, hierarchical clustering usually spots surveyees who have a different style when answering surveys. Those phenomena tend to drown out any subtle phenotypes, if they exist.

As well, it would be interesting to see if postvax and Long COVID overlap heavily.

Of 525 data points, 438 had valid severity data that could be used for the cluster analysis

The diagram below is a dendrogram. DisplayR.com has an excellent webpage on how to read dendrograms. Visit https://www.displayr.com/what-is-dendrogram/ or https://archive.ph/4PN2f

Symptoms were rated on a subjective scale. -1 = don't have this symptoms. 0 = no suffering. 4 = worst suffering imaginable. Avoidance behaviours (for light/sound sensitivity) are on a scale of 0 to 1, or 0% to 100%. e.g. 44% wore sunglasses indoors.

Number of people in each cluster

0.0    203
1.0    126
2.0     45
3.0     64
Name: Cluster, dtype: int64
Cluster 0.0 1.0 2.0 3.0
Employment severity peak 2.507463 2.216000 2.659091 1.968254
Employment severity current 1.964286 1.560976 2.452381 1.174603
Peak pain 2.576355 1.682540 3.155556 0.515625
Peak depression 2.334975 1.547619 2.533333 0.765625
Peak cognitive difficulties 3.157635 2.214286 3.266667 1.843750
Peak sleep issues 2.714286 2.357143 2.955556 0.468750
Peak bleeding disorders -0.610837 -0.674603 2.555556 -0.843750
Peak clotting disorders -0.192118 -0.158730 1.888889 -0.343750
Peak POTS OI 2.403941 1.460317 2.577778 0.531250
Peak food intolerances 2.211823 0.769841 1.777778 -0.281250
Peak sound sensitivity 2.655172 0.698413 2.866667 -0.109375
Peak light sensitivity 2.704433 0.428571 2.622222 -0.125000
Peak other symptoms 3.064039 2.206349 3.266667 1.015625
Current pain 1.551724 0.865079 2.311111 0.031250
Current depression 1.315271 0.777778 2.000000 0.140625
Current cognitive difficulties 1.965517 1.182540 2.311111 0.718750
Current sleep issues 1.615764 1.238095 2.222222 -0.109375
Current bleeding disorders -0.773399 -0.738095 1.755556 -0.937500
Current clotting disorders -0.546798 -0.333333 1.111111 -0.671875
Current POTS OI 1.246305 0.619048 1.488889 -0.250000
Current food intolerances 1.280788 0.365079 0.977778 -0.546875
Current sound sensitivity 1.403941 0.039683 1.911111 -0.625000
Current light sensitivity 1.389163 -0.111111 1.711111 -0.687500
Current other symptoms 1.940887 1.380952 2.555556 0.218750
Age 41.509901 43.080645 46.613636 43.046875
Sunglasses 0.351485 0.137097 0.431818 0.081967
Avoided outdoors 0.574257 0.193548 0.568182 0.147541
Avoided bright environments 0.752475 0.330645 0.681818 0.147541
No light sensitivity 0.153465 0.604839 0.204545 0.754098
Earpro 0.522167 0.241935 0.488889 0.114754
Avoided loud environments 0.798030 0.459677 0.822222 0.262295
No sound sensitivity 0.137931 0.475806 0.088889 0.688525

One way to describe the clusters would be:

  1. High severity --> High severity, low recovery
  2. High severity --> Low severity, high recovery
  3. Low severity --> Low severity, low recovery (those with lower severity have a ceiling as to how much they can improve)
  4. A small high-severity cluster where there is a tendency to report both bleeding and clotting disorders. Almost all of these people are vaccine injured.

Sound and light sensitivity analyses (by cluster)¶

Survey questions were:

  • "Have you done any of the following due to sensitivity to light?"

    • "Avoided bright environments"
    • "Avoided being outdoors" --> Avoided outdoors
    • "Wore sunglasses indoors" --> Sunglasses
    • "None of the above" --> No light sensitivity

  • "Have you done any of the following due to sensitivity to sound?"

    • "Avoided loud environments"
    • "Wore ear buds" --> Earpro
    • "None of the above" --> No sound sensitivity (*This is not a good name. What it really means is none of the above.)

The two high-severity clusters had roughly the same percentage answering the objective questions about avoidance behaviours. However, one of those clusters rated their subjective suffering slightly higher (on average).

Statistics for the composition of each cluster¶

The cluster that mainly consists of vaccine injured participants (it may be #3) may reflect surveyees who answer surveys with a particular style rather than a difference in underlying medical condition. (The full analysis is not shown.)

Aside from that cluster, the postvax and Long COVID patients are hard to distinguish based on the survey questions asked. However, this survey was not designed to find differences. There was not a question about loss of smell or taste- a symptom that may be far more common in Long COVID.

Cluster 0

Vaccine injured    106
Long COVID          88
ME/CFS               9
Name: Chronic illness, dtype: int64
Cluster 1

Vaccine injured    62
Long COVID         59
ME/CFS              5
Name: Chronic illness, dtype: int64
Cluster 2

Vaccine injured    40
Long COVID          4
ME/CFS              1
Name: Chronic illness, dtype: int64
Cluster 3

Long COVID         36
Vaccine injured    28
Name: Chronic illness, dtype: int64

Second cluster analysis (symptoms rather than patients)¶

This analysis looks at symptoms that are similar to each other than than people who are similar to each other.

I was curious to see if light and sound sensitivity were 2 symptoms characteristic of its own phenotype, as an underyling medical cause (e.g. meningitis) would lead to a distinct phenotype. Perhaps a survey or study designed to look for phenotypes would be able to find distinct phenotypes.

The bleeding and clotting disorders form the most distinct cluster (4, 5, 15, 16 in the dendrogram above). This likely reflects how those surveyees answered the survey as they typically reported BOTH bleeding and too much clotting. It may not reflect underlying medical differences.

Of 24 patients who reported 1 or higher for subjective suffering from clotting disorders, only 2 reported taking a prescription drug thinner (clopidogrel or clopidogrel + heparin). 10 did not try any of the natural anticoag supplements (serra, natto, lumbro).

Symptom followed by which cluster they are grouped into

Peak pain                         2
Peak depression                   2
Peak cognitive difficulties       2
Peak sleep issues                 2
Peak bleeding disorders           1
Peak clotting disorders           1
Peak POTS OI                      0
Peak food intolerances            0
Peak sound sensitivity            0
Peak light sensitivity            0
Peak other symptoms               2
Current pain                      2
Current depression                2
Current cognitive difficulties    0
Current sleep issues              0
Current bleeding disorders        1
Current clotting disorders        1
Current POTS OI                   0
Current food intolerances         0
Current sound sensitivity         0
Current light sensitivity         0
Current other symptoms            2
Name: Cluster, dtype: int64

Popularity rankings¶

Treatments sorted from most data points (people who reported data for the treatment) to least. The top 60 are shown. See earlier tables (All 235 treatments surveyed) for a complete list.

Treatments with more than 0 data points Score Risk score # of data points (out of 525 surveyees) Percentage tried (%)
1 [Time] 0.83 -0.35 465 88.6
2 [Vitamin D] 0.56 -0.05 388 73.9
3 [Magnesium] 0.87 -0.05 366 69.7
4 [B vitamins] 0.58 -0.12 353 67.2
5 [Light exercise] -0.37 -0.91 331 63.0
6 [Vitamin C] 0.47 -0.05 318 60.6
7 [Avoiding exercise] 0.95 -0.14 306 58.3
8 [Curcumin] 0.52 -0.07 283 53.9
9 [Zinc] 0.52 -0.06 273 52.0
10 [Water and salt] 1.04 -0.02 272 51.8
11 [Fish oil etc.] 0.50 -0.02 267 50.9
12 [Probiotics prebiotics] 0.63 -0.09 266 50.7
13 [Advil] 0.31 -0.17 254 48.4
14 [Meditation] 0.96 -0.03 250 47.6
15 [Intense exercise] -1.76 -2.07 243 46.3
16 [NAC] 0.56 -0.14 243 46.3
17 [Quercetin] 0.54 -0.05 243 46.3
18 [Pacing strategies] 1.28 -0.06 239 45.5
19 [Melatonin] 0.53 -0.18 236 45.0
20 [Multivitamin] 0.34 -0.08 228 43.4
21 [Aspirin] 0.37 -0.12 227 43.2
22 [Nattokinase] 0.64 -0.12 223 42.5
23 [Tylenol] 0.26 -0.08 222 42.3
24 [CoQ10] 0.51 -0.04 214 40.8
25 [Intermittent fasting] 0.77 -0.08 212 40.4
26 [Low histamine diet] 1.25 0.00 200 38.1
27 [Zyrtec] 0.63 -0.11 187 35.6
28 [Glutenfree diet] 1.14 -0.01 187 35.6
29 [Massage] 0.66 -0.22 174 33.1
30 [Other NSAID] 0.43 -0.22 171 32.6
31 [Acupuncture] 0.66 -0.21 165 31.4
32 [Compression garments] 0.65 -0.10 161 30.7
33 [CBD with THC] 0.48 -0.36 159 30.3
34 [Pepcid] 0.46 -0.24 157 29.9
35 [Prayer] 1.26 -0.01 157 29.9
36 [Claritin] 0.49 -0.10 152 29.0
37 [Drinking water] 0.96 0.00 152 29.0
38 [Glutathione] 0.60 -0.07 151 28.8
39 [Corticosteroids] 0.52 -0.48 147 28.0
40 [CBD without THC] 0.51 -0.08 145 27.6
41 [Benzodiazepines] 1.15 -0.12 144 27.4
42 [K vitamins] 0.44 -0.11 142 27.0
43 [CBT] 0.54 -0.09 142 27.0
44 [LDN] 0.91 -0.26 140 26.7
45 [Ashwagandha] 0.34 -0.19 139 26.5
46 [Beta blockers] 0.66 -0.37 136 25.9
47 [Sleeping with head of bed elevated] 0.52 -0.13 134 25.5
48 [Ivermectin] 1.00 -0.14 129 24.6
49 [Resveratrol] 0.52 -0.03 126 24.0
50 [OMAD] 0.44 -0.24 124 23.6
51 [ALA] 0.48 -0.06 120 22.9
52 [Graded exercise therapy] -0.71 -1.19 118 22.5
53 [Benadryl] 0.35 -0.25 112 21.3
54 [Serrapeptase] 0.79 -0.05 112 21.3
55 [VNS] 0.89 -0.09 108 20.6
56 [Lion's mane] 0.49 -0.16 106 20.2
57 [Gabapentin] 0.00 -0.59 105 20.0
58 [Dandelion] 0.43 -0.05 96 18.3
59 [Chiropractic] 0.46 -0.29 89 17.0
60 [24-48 hour fasting] 0.43 -0.42 89 17.0

Risk rankings¶

Treatments sorted from highest risk score to lowest risk score. May be limited to the 60 riskiest treatments.

Treatments with more than 90 data points Score Risk score # of data points (out of 525 surveyees)
1 [Intense exercise] -1.76 -2.07 243
2 [Graded exercise therapy] -0.71 -1.19 118
3 [Light exercise] -0.37 -0.91 331
4 [Remeron, Seroquel, Wellbutrin] -0.31 -0.72 126
5 [Celexa, Lexapro, Fluvoxamine, Prozac, Paxil, ... -0.17 -0.70 264
6 [Tetracyclines, Fluoroquinolones, Penicillins,... 0.21 -0.55 220
7 [Corticosteroids] 0.52 -0.48 147
8 [Beta blockers] 0.66 -0.37 136
9 [CBD with THC] 0.48 -0.36 159
10 [Time] 0.83 -0.35 465
11 [Amphotericin, Canesten, Econazole, Fluconazol... 0.51 -0.27 101
12 [LDN] 0.91 -0.26 140
13 [Benadryl] 0.35 -0.25 112
14 [Pepcid] 0.46 -0.24 157
15 [OMAD] 0.44 -0.24 124
16 [Other NSAID] 0.43 -0.22 171
17 [Acupuncture] 0.66 -0.21 165
18 [Ashwagandha] 0.34 -0.19 139
19 [Melatonin] 0.53 -0.18 236
20 [Advil] 0.31 -0.17 254
21 [Lion's mane] 0.49 -0.16 106
22 [Plant based diet, Vegan diet] 0.73 -0.15 130
23 [Avoiding exercise] 0.95 -0.14 306
24 [Ivermectin] 1.00 -0.14 129
25 [NAC] 0.56 -0.14 243
26 [Sleeping with head of bed elevated] 0.52 -0.13 134
27 [B vitamins] 0.58 -0.12 353
28 [Benzodiazepines] 1.15 -0.12 144
29 [Nattokinase] 0.64 -0.12 223
30 [Aspirin] 0.37 -0.12 227
31 [K vitamins] 0.44 -0.11 142
32 [Zyrtec] 0.63 -0.11 187
33 [Claritin] 0.49 -0.10 152
34 [Compression garments] 0.65 -0.10 161
35 [VNS] 0.89 -0.09 108
36 [CBT] 0.54 -0.09 142
37 [Probiotics prebiotics] 0.63 -0.09 266
38 [Intermittent fasting] 0.77 -0.08 212
39 [CBD without THC] 0.51 -0.08 145
40 [Tylenol] 0.26 -0.08 222
41 [Multivitamin] 0.34 -0.08 228
42 [Glutathione] 0.60 -0.07 151
43 [Curcumin] 0.52 -0.07 283
44 [ALA] 0.48 -0.06 120
45 [Zinc] 0.52 -0.06 273
46 [Pacing strategies] 1.28 -0.06 239
47 [Dandelion] 0.43 -0.05 96
48 [Serrapeptase] 0.79 -0.05 112
49 [Quercetin] 0.54 -0.05 243
50 [Magnesium] 0.87 -0.05 366
51 [Vitamin D] 0.56 -0.05 388
52 [Vitamin C] 0.47 -0.05 318
53 [CoQ10] 0.51 -0.04 214
54 [Meditation] 0.96 -0.03 250
55 [Resveratrol] 0.52 -0.03 126
56 [Water and salt] 1.04 -0.02 272
57 [Fish oil etc.] 0.50 -0.02 267
58 [Prayer] 1.26 -0.01 157
59 [Glutenfree diet] 1.14 -0.01 187
60 [Drinking water] 0.96 0.00 152