It’s difficult to illustrate the scope of this problem without evidence. The issue of under-researched conditions is far more significant than its level of media coverage would suggest, so it is integral to the argument for Folk Evidence’s development to show the situation clearly. Below are a collection of statistics that I am sure will combine to show the number of people affected by this gap in medical literature, and the impact that Folk Evidence can have to improve their lives.
Chronic, variable diseases will lead to
6 Billion Cases
Over a spread of 35 chronic variable diseases.
This collation of a set of 35 exemplar diseases has combined data from reputable sources with estimates for worldwide cases in the last generation. It goes to show just how many people may be impacted by this kind of disease over the course of their lives.
More than 5 Million Entries
Regarding this spread of diseases per year.
This is a summation of the annual entries data from the official reddit forums devoted to the sufferers of each disease. This number represents the level of untapped data that could be accredited and applied through Folk Evidence.
135 Million Sufferers
Turning to Reddit each year for help with these diseases.
This number represents the number of people who use reddit to find information about their disease. This is the most important number here, as it represents the number of people who would directly seek out a resource like Folk Evidence, and who would likely be more able to alleviate their condition if provided with the information it could collate.
These statistics alone should give a valuable indication of both the enormity of this issue, as well as the level to which a collection of this glut of anecdotal evidence could help the situation. In particular, there are several conditions which will be explored in more detailed posts over the course of this project that could be particularly improved with a tool like Folk Evidence.
Long COVID
This form of prolonged COVID symptoms – which can be entirely debilitating for many sufferers – currently affects 400 million people worldwide. These people seem to be turning to reddit for help in finding treatments for the disease, with the forum receiving 11000 weekly visitors, with as many as 10% of these visitors sharing their own experiences with the disease. This has the potential for over 50000 annual data entries that could be scoured for repeatedly successful treatments to be recommended to patients.
Multiple Sclerosis
Folk Evidence could compile as many as 190000 entries that could help sufferers of this incredibly debilitating illness every year. As a disease that affects nearly 3 million people worldwide, this data could be incredibly valuable for improving the lives of those with multiple sclerosis and finding treatments to help them live a life closer to normality. The r/multiplesclerosis forum receives over 70000 weekly visitors, with one in 20 adding to the collection of anecdotes within the forum.
Celiac Disease
With a disease as variable and widely undiagnosed as celiac, an active reddit forum would be expected with self-diagnosed and suspecting sufferers sharing their experiences. This is in fact what we find, with nearly 100000 weekly visitors, out of an estimated global community of around 100 million with celiac. This amounts to just shy of 200000 annual data entries that could be scoured for repeat treatments that have helped the members of this community.
Many other diseases came into the scope of this data collection, and so for completeness and in the interest of data transparency, I will include the entirety of the 35 diseases below.
| Disease | Weekly Reddit Visitors | Weekly Reddit Contributors | Annual Data Entry Estimate | Global number of sufferers (millions) | Data Source Site |
|---|---|---|---|---|---|
| ME/CFS | 3300 | 311 | 16172 | 17 | www.meresearch.org.uk |
| Long COVID | 11000 | 110 | 57200 | 400 | www.nytimes.com |
| POTS | 130000 | 5200 | 270400 | 1 | www.dysautonomiainternational.org |
| MS | 71000 | 3600 | 187200 | 2.9 | mstrust.org.uk |
| Parkinson’s | 14000 | 748 | 38896 | 10 | www.parkinson.org |
| Alzheimer’s | 12000 | 1400 | 72800 | 55 | www.alzint.org |
| Epilepsy | 62000 | 4600 | 239200 | 50 | www.who.int |
| Fibromyalgia | 75000 | 4600 | 239200 | 160 | www.moregooddays.com |
| Osteoarthritis | 5200 | 333 | 17316 | 528 | www.who.int |
| Rheumatoid Arthritis | 12000 | 877 | 45604 | 18 | www.who.int |
| Systemic Lupus Erythematosus | 55000 | 1800 | 93600 | 5 | www.lupus.org |
| Ehlers-Danlos Syndrome | 130000 | 3700 | 192400 | 1.4 | medlineplus.gov |
| Psoriasis | 51000 | 1200 | 62400 | 125 | www.psoriasis.org |
| Acne | 60000 | 1600 | 83200 | 650 | www.pierre-fabre.com |
| IBS | 117000 | 3200 | 166400 | 350 | aboutibs.org |
| Crohn’s Disease | 73000 | 3300 | 171600 | 10 | ampersandhealth.co.uk |
| Ulcerative Colitis | 66000 | 2800 | 145600 | 1.9 | www.gastroeneterologyadvisor.com |
| Celiac Disease | 99000 | 3700 | 92400 | 98 | celiac.org |
| NAFLD | 14000 | 619 | 32188 | 1240 | pmc.ncbi.nlm.nih.gov |
| Menopause | 260000 | 11000 | 572000 | 3500 | N/A |
| Endometriosis | 184000 | 4100 | 213200 | 190 | www.who.int |
| PCOS | 163000 | 4300 | 223600 | 69.5 | www.who.int |
| PMDD | 89000 | 3400 | 176800 | 31 | www.ox.ac.uk |
| Interstitial Cystitis | 33000 | 1200 | 62400 | 4.2 | www.icnetwork.org |
| Sarcoidosis | 1700 | 95 | 4940 | 1.2 | stopsarcoidosis.org |
| Sjogren’s Syndrome | 18000 | 1400 | 72800 | 3.1 | www.ncbi.nlm.nih.gov |
| Myasthemia Gravis | 4000 | 461 | 23972 | 1.4 | www.healthline.com |
| Asthma | 31000 | 1400 | 72800 | 262 | www.who.int |
| COPD | 3600 | 384 | 19968 | 384 | cks.nice.org.uk |
| HIV | 16000 | 448 | 23296 | 41 | www.unaids.org |
| Depression | 276000 | 8700 | 452400 | 332 | www.who.int |
| Anxiety | 574000 | 9800 | 509600 | 359 | www.who.int |
| Bipolar | 106000 | 5700 | 296400 | 37 | www.who.int |
| Schizophrenia | 44000 | 4600 | 239200 | 24 | www.who.int |
| OCD | 205000 | 6200 | 322400 | 700 | www.goldenstepsaba.com |
| Total: | 3068800 | 107876 | 5609552 | 6162.6 (excluding menopause) |
This data shows conclusively that the problem of under-researched, variable diseases is a pervasive one, that has a major impact on an unrecognised proportion of the globe.