Epistemic Injustice & MECFS: Knowledge is Power
What Is Epistemic Injustice?
Epistemic injustice is injustice that is due to a lack of knowledge. This can be an inability to collect knowledge, access knowledge, or produce knowledge. There are two forms of epistemic injustice.
Testimonial Injustice: Not being believed.
Ex: A black woman is less likely than a white man to have her symptoms believed as she reports them to her doctor.
Hermeneutical Injustice: Not being able to conceptualize your oppression. Being unlabeled and unresearched.
Ex: Someone who is non-binary but does not know that non-binary genders exists feels unrecognized and alone.
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Why Testimonial Injustice Matters
Testimonial injustice is important because you need to understand a problem to solve it. The people who best understand problems in social and medical science are generally the patients are marginalized groups that live with those problems.
When we fight to #believePatients and remind our doctors not to confuse an hour lecture on our diagnosis with decades of lived experience this is fighting against testimonial injustice.
Testimonial injustice in the form of medical gaslighting, lack of patient outreach, and exclusion of marginalized groups decreases our ability to collect accurate data about MECFS. In turn, this increases sigma against patients which makes them less believed, increasing testimonial injustice.
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Why Hermeneutical Injustice Matters
Hermeneutical injustice is important because you need to be able to talk about something to study it and address it.
A name is something we give to a _thing_. When we give names we are creating a category of thing. For example: mugs are vessels that hold liquid and have a handle.
But when we name something like MECFS we are doing more, we are creating a diagnosis. Without the name MECFS we would have a lot of patients with similar symptoms, but no way to address or study those patients as a group.
Similarly when we name a social issue like medical gaslighting we are creating a _thing_ that can be studied and critiqued out of a vast array of similar experiences.
When we lack the language to discuss a particular problem this is hermeneutical injustice. Without a name, we cannot study and solve problems in medical and social sciences.
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Testimonial Injustice: Medical Gaslighting
Medical gaslighting is a direct consequence of testimonial injustice. In this case, privileging the knowledge of doctors over that of patients.
This harms health outcomes because patient symptoms are often the most reliable source of information about someone's medical condition. This is especially true of rare diseases or diseases like MECFS where diagnostic blood tests are unavailable.
Furthermore, the dismissal of patient testimony leads to patients being pushed to dismiss and neglect their own bodily signals. This leads to harm from pushing through PEM and fatigue which we know to cause a permenant decline in MECFS.
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Testimonial Injustice: Exclusion From Public Life
A lesser-considered testimonial injustice faced by MECFS patients is the exclusion from public life faced by housebound and bedbound ME advocates.
The termining of online activism as "slacktivism" dismisses the voices of those excluded from physical spaces.
Complex requirements for submitting complaints and requests to governments about the struggles of ME patients exclude patients with cognitive difficulties from self-advocacy.
Inability to exist in public spaces makes housebound and bedbound patients invisible. This is especially problematic in research studies, many of which unintentionally exclude severe patients leading to results that may not apply to the most vulnerable.
There is often a false belief that because ME advocacy is less prevalent than with other diseases it is a less severe disease. Quite the opposite, the severity of many ME patients excludes them from advocacy. We are simply less able to protest than those with AIDS, cancer, MS etc.
Additionally, the extremely high caregiving needs of ME patients for years on end precludes many of our closest allies from advocacy as well.
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Hermeneutical Injustice: Mislabeling & Misdiagnosis
The coining of the term "Chronic Fatigue Syndrome" is quite possibly the biggest epistemic injustice in MECFS history. It has lead not only to massive proliferation of testimonial injustice through medical gaslighting but also to hermeneutical injustice through poor diagnosis.
Because in the US, MECFS (ICD-10-CM) can only be recorded in medical records as "chronic fatigue" or "myalgic encephalomyelitis" and most clinicians incorrectly code this as chronic fatigue, we have no way of knowing how many cases of MECFS exist in the US, nor any statistical data about those cases.
Additionally, around the world the name CFS has spread confusion about the true nature and diagnostic requirements of MECFS. This has lead to studies with poor inclusion criteria producing distorted, meaningless, or harmful results and wasting valuable research dollars.
Finally, the poor definition of MECFS through confusion surrounding CFS leads many patients vulnerable to misinformation about their disease and confusion about their prognosis and treatment options.
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Hermeneutical Injustice:
Lack of Complex Chronic Illness Specialty
Doctors for MECFS also lack a cohesive framework or label to work under. There are very few specialists for ME and those that are have many different specialties from GPs, Internal Medicine, Infectious Diseases, Neurology, Rheumatology, Cardiology etc.
Because there is no specialty for complex chronic illness, patients with ME but also MCAS, EDS, POTS and Dysautonomia often have no way to receive comprehensive care. Many of us end up on a bus with no driver. With many specialists offering opinions, but no doctors looking at the whole picture.
Furthermore, the lack of a complex chronic illness specialty means that it is much more difficult to arrange conferences and fund studies for these diseases as organizations dedicated to other medical specialties will always feel it's not quite "in their domain."
This in turn leads to less knowledge about these diseases which leads to fewer doctors specializing in them.
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Actions We Can Take
#BelievePatients
The most basic way you can fight testimonial injustice is to believe patients. To actively seek out the perspectives of pwME especially the most marginalized such as poor, BIPOC, and housebound & bedbound patients. This is important for everyone but especially for those in social services and healthcare.
#CodeUsCountUsCureUs
Go to @meactnet and sign the petition to create a specific code for MECFS in the US medical system. This will allow us to finally see the impact of ME in the US statistically.
Study Complex Chronic Illness & Create Theories & Labels.
Donate to @openmedf to help us study the underlying dysfunctions behind complex chronic illnesses and post-viral diseases.
Go to www.meaction.net/epi to participate in the most detailed survey to date on MECFS and connected post-infection illness. Patients with ME, EDS, MCAS, POTS and healthy controls needed!
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Testimonial Injustice & Allies
People with ME face massive testimonial injustice. We are not believed by doctors and we are not seen or heard by researchers. Because we are housebound and bedbound we cannot protest in the streets. Many cannot share their experience at all.
It is therefore essential that our allies amplify and fight on our behalf. That they educate themselves and share our stories. That they march and protest when we cannot.
We may not be dead. But we are #millionsMissing. Right now #millionsMore with long covid are #stillSickStillFighting but this disease is a vampire to your ability to fight. The millions of people with ME did not just give up, they were forced to ration their advocacy simply to stay alive.
So please, if you are still in the temporary condition of being enabled, fight for the recognition, treatment and cure of ME and post-viral illness before even more fall victim to this mass disabling event and the gaslighting and mistreatment that our government has chosen over providing real help.
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Knowledge is power. Epistemic injustice is when that power is stolen.
Here's how power is stolen from the millions Missing with MECFS and how we can take it back.
1.) Name our demons
Recognizing epistemic injustice allows us to pinpoint the places it occurs and name the harm that is occurring. In other words, by learning that hermeneutical injustice exists we fight it. That is the goal of this post.
2.) Believe Patients
Testimonial injustice against pwME largely tied to medical sexism medical gaslighting and the legacy of hysteria is rampant. We must start believing patients' testimony of their own bodies. Without this, no research or progress can be made.
3.) Code Us Count Us Cure Us
Without accurate tracking, the US cannot address the Myalgic Encephalomyelitis and Long Covid crisis.
UPDATE: As of Nov the CDC now has assigned code G93.32 to MECFS. Please inform your clinicians!
4.) Research Complex Chronic Illness
Donate to @openmedf to help us study and learn about the complex interactions of multiple organ systems that occurs in ME fibromyalgia and in other multisystemic diseases affecting the autonomic nervous system, immune system, and mitochondria.
5.) Share your story and data
Go to www.meaction.net/epi to participate in the world's largest study on post-viral illness. Patients with ME / #CFS as well as long covid, MCAS, and POTS or any combination needed as well as healthy controls!
Fixing epistemic injustice may not fix the many material injustices faced by disabled people with ME and those with chronic illness more broadly. But they are still a massive avenue for empowerment and changes. They are the reason pwME often wish they had a disease like cancer or MS. Not because these diseases are less terrible. But because they are known because the only thing that hurts more than chronic pain is having your pain dismissed and ignored. The only thing worse than having your life stolen is being told you must not have wanted it.
