Trish Blogs about Endo

Blog #1:

A serious flaw in the medical knowledge systems: when information is wrong, starting at the top.

We learn about our world through experiences; what we experience firsthand, read and watch streamed through various information and ‘quasi’ information platforms.  Some is ‘self-selected’ and some is ‘spoon-fed’ to us with others controlling the content and direction of a given topic.

This is not limited to news organizations. Entertainment outlets attempt to share ‘important information’ as well, watered-down for appeal and easy reading.  Unfortunate, but not unexpected, this often results in a product that is far from accurate.  But what happens when authoritative ‘sources’ – presumed to be ‘gold standard’ are also out-dated?

Sadly, women’s health, THE most underfunded, neglected specialty, yet most important to ensure continuation of a healthy species, remains captive to the patriarchy and prisoner to the for-profit and personal interests of those who dictate the course for progression.  The subspecialty of endometriosis has experienced almost no progress for decades.  To wit:

I recently read an article in the Journal of American Medical Association (JAMA), THE journal most healthcare practitioners in America consider ‘Gold Standard’.  Indeed, Jama states they are “the most circulated journal in the world with more than 320,000 JAMA recipients of the print journal, 1.2 million recipients of electronic tables of contents and alerts, and over 20 million annual visits to the journal’s website.”  Unfortunately, the feature presented to the vast audience of practitioners, policy makers and members of the public was of the poorest quality [Peiris, AN, Chaljub E, Medlock D  Endometriosis. JAMA.2018;320(24):2608] .  As such, a response was necessary.  Importantly, the premise of my response was not to attack the authors. Rather I sought to raise awareness on the pandemic proportion of misinformation that continues to plagues our knowledge systems at a time of ‘Evidence Based Medicine’.

It was with high hopes that this prestigious journal, with a massive following, would accept my Letter of Response to the article ‘Endometriosis’.  Today I received notice, however, that the editorial team denied my submission on the grounds that it lacked ‘high enough merit’.  They also cited less pertinent concerns (ie. ‘limited space’).  The Response Letter can be read here: letter of response to jama.

As a writer, I expect denial.  As an educated advocate, witnesses to the numerous injustices those with endometriosis continue to face year after year, for decades while other areas of healthcare evolve, I feel hostage to the system that revolves around the daily onslaught of misinformation that starts from the very top.

It is a system with intent to provide the most accurate information yet, those within the very system itself are blinded to the misinformation they promote.  Perhaps they are aware of the concerns yet perceive the topic endometriosis – insignificant.  Or perhaps, in the paltry 400 word limit, they allow, I should have used ‘shock and awe’ in my Letter of Response highlighting the destructive nature of endometriosis beyond menstruation. Destruction that includes kidney death, bowel obstructions, collapsing lungs and coughing up blood – conditions still perceived as ‘rare’,  when in fact, they are not.

The plethora of injustices and complications which can occur with endometriosis provides endless topics for a writer. Unfortunately, always having to be the ‘reactor’ and ‘put the flames out’ within a tiny envelop to work in makes the mission of an advocate far more difficult than it should. When the system blindly gives a platform where millions of readers will access inaccurate information, I ask the system, when will we, as advocates and survivors, be given the equivalent platform to share accurate information?

Wendy Bingham, DPT  January 29,  2019

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