{"id":18993,"date":"2016-08-08T08:52:42","date_gmt":"2016-08-08T12:52:42","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=18993"},"modified":"2016-08-08T17:05:13","modified_gmt":"2016-08-08T21:05:13","slug":"e-patients-as-journal-authors-sean-ahrens-self-experiment-published-in-a-major-journal","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2016\/08\/e-patients-as-journal-authors-sean-ahrens-self-experiment-published-in-a-major-journal.html","title":{"rendered":"e-Patients as journal authors: Sean Ahrens self-experiment published in a major journal"},"content":{"rendered":"

\"Sean<\/a><\/p>\n

We’d love to start a list of other patient-authored papers and posters – let us know in the comments! We know of Dana M. Lewis & Scott Leibrand’s poster about #OpenAPS<\/a> in June – who else??<\/em><\/p>\n

We’ve written before about e-patient Sean Ahrens and the Crohnology community<\/a> he started. \u00a0In my view the most important post of the series was four years ago:\u00a0Crossing a threshold: the e-Patient movement enters wave 2<\/a>. That post linked to an article in\u00a0Fast Company\u00a0<\/em>(a business magazine!) about Sean.<\/p>\n

Now, could this be wave 3? We’re starting to see e-patients as authors\u00a0in medical journals.\u00a0That\u00a0<\/em>is a culture change, folks.<\/p>\n

In this case it’s not just an opinion piece – Sean devised and conducted an experiment on himself! Here’s his Facebook post the other day on it:<\/p>\n

\n

So I think this is kind of big news: I just got published (in print) in a major medical journal, the American Journal of Gastroenterology (AJG)!<\/p>\n

I submitted a 1500-word scientific report of the self-tracking experiment I did on myself taking pig whipworm (an intestinal parasite) for my Crohn\u2019s in 2010. For this experiment, I had mail-ordered the pig whipworm from the internet, shipped via Thailand in small vials. Yeah I know that sounds kinda crazy. I did this experiment from March – August 2010, intentionally ingesting TSO (Trichuris Suis Ova<\/em>), a non-FDA approved treatment, every two weeks, and recorded my changing symptoms in a digital tracker I built for myself.<\/span><\/p>\n

\n

While I\u2019ve given talks on this self-experiment at various health and medical conferences, the detailed report of my results have remained unpublished up until now. And they are published in a major medical journal by Nature! That feels pretty good ;)<\/span>!<\/p>\n

Unfortunately, the way medical journal publishing works is that unless you have paid access to Nature<\/em>, you cannot read my publication (entitled \u201cOpening (and Swallowing) A Can of Worms to Treat My Crohn\u2019s Disease<\/a>\u201d). And legally I have given up copyright ownership of my submission to Nature (kind of a bummer, right?) so I can\u2019t share it with you here; however, after 6 months from when it appeared in print (July 2016), I have rights to re-publish it online for you to view\u2014which I will do, in December 2016.<\/p>\n

Since you can\u2019t read it now, I\u2019ll give you the summary:<\/p>\n

During 2010, my Crohn\u2019s symptoms were very active. During most all of the experiment taking pig whipworm, it appeared the whipworm was not helping: my symptoms remained very active. Because taking care of my health was priority #1 and doing the experiment was priority #2, I started a dramatically strict diet (called the Specific Carb Diet) about 2\/3 the way into my study because I needed to do anything to quell my symptoms; I continued this diet for years afterward. Three months after I stopped taking the pig whipworm (and seven months after starting the diet), my symptoms dramatically improved (and nearly disappeared); in November 2013 my physician declared after a colonoscopy that my Crohn\u2019s showed signs of \u201cremission with no visible inflammation\u201d. I believe that one of the two (the diet or the whipworm) helped bring me into remission, but I cannot say which one, or if it was the combination of the two.<\/p>\n

As you may know, I think it’s super important for the advancement of medical knowledge for patients who do self-experiments (or just treatment variations, diets, etc) on themselves to record and publish those so we can build up a resource of patient’s real-world (and otherwise unrecorded) collective knowledge. This will help medical information to flow from patients up.<\/p>\n

That\u2019s my report for now, and I plan on publishing the 1500-word full report once I have rights to do so in December 2016.<\/p>\n

\n

In a comment he added: “Luckily the AJG now solicits these kind of studies via their \u201cRed Section\u201d which is dedicated to patient submissions. I\u2019m not sure a lot of patients are submitting self-tracking study reports like this, but more should. And hopefully more journals are opening up to accept from patients even if they don\u2019t have PhDs.” (Sean himself doesn’t – “just” a bachelor’s degree.)<\/p>\n

I hadn’t heard of a journal having a section dedicated to patient submissions – how great! Why doesn’t everyone do that??<\/p>\n

 <\/p>\n<\/div>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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We’ve written before about e-patient Sean Ahrens and the Crohnology community he started. \u00a0In my view the most important […]<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false},"version":2}},"categories":[171,35,7,3586],"tags":[68,147,158,55,178,7927,7924,7926],"coauthors":[],"class_list":["post-18993","post","type-post","status-publish","format-standard","hentry","category-e-patient-stories","category-key-people","category-positive-patterns","category-research-issues","tag-health","tag-journal","tag-medical","tag-patients","tag-report","tag-sean-ahrens","tag-specific-carb-diet","tag-trichuris-suis-ova"],"jetpack_publicize_connections":[],"yoast_head":"\ne-Patients as journal authors: Sean Ahrens self-experiment published in a major journal - SPM Blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/participatorymedicine.org\/epatients\/2016\/08\/e-patients-as-journal-authors-sean-ahrens-self-experiment-published-in-a-major-journal.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"e-Patients as journal authors: Sean Ahrens self-experiment published in a major journal - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"We’d love to start a list of other patient-authored papers and posters – let us know in the comments! 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