After happening across a documentary entitled, “Unrest” this weekend, I’m pondering the question: How many cures are we missing?
“You can miss a cure because people are telling the wrong story about you.” – Jennifer Brea
That’s the powerful quote that stuck with me after watching the heart wrenching story of Jennifer Brea and others who suffer from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) also sometimes known as Myalgic Encephalopathy.
“You can miss a cure because people are telling the wrong story about you.” – Jennifer Brea
ME/CFS is a complicated illness affecting the neurological, immune, endocrine and energy metabolism systems. Like Multiple Sclerosis, Lyme Disease, Celiac Disease, and Fibromyalgia, ME/CFS has attracted controversy. For many years, it was a debated whether it was an illness at all. Today, up to 90% of people with this syndrome go undiagnosed. Approximately 75% of those affected can no longer work and 25% are homebound and sometimes bedridden.
Unfortunately, the story we often tell when an illness has vague symptoms, is chronic or intermittent, is difficult to diagnose, has no cure, or is difficult to treat is that the patient has a psychological disturbance rather than a physical illness. Some doctors directly tell patients the symptoms are all in their head.
It has happened to me. During the two years I spent with an intracellular parasite encapsulated in a capped tooth, I was told by two different doctors that the extreme fatigue, abdominal pain, abnormal bleeding, and pain behind my right eye that occurred between each round of pneumonia were all in my head. The story they were telling nearly caused my death.
I had psittacosis that I contracted from pet Cockatiels which unbeknownst to me had been illegally imported. My diagnosis was confirmed by both a blood titer and a positive test of the birds. The good news is, I lived. The bad news is, it was an immense struggle to get medical help until I had 104 temperature, incessant vomiting, and pneumonia. At that point, I was considered ill. The fact that it kept recurring was considered unrelated.
That illness was 30 years ago. Any time I have crossed paths with one of those two doctors since then he asks me, “Are you sure those birds had something to do with it?” Yes, I’m sure. The tests indicated the birds carried the organism. The USDA asked for custody of the birds so they could save tissue samples to use as evidence against the pet store owner. YES, I’M SURE!
I am sure, but he is not. In spite of the supporting science, this doctor who is an animal rights advocate cannot bring himself to let go of his story. In his story, animals do not cause harm.
“You can miss a cure because people are telling the wrong story about you.” – Jennifer Brea
Every time I hear someone condescendingly say, “I believe in science,” I cringe. It’s not that I don’t believe in science. It’s that I recognize that we don’t have as much scientific knowledge today as we will have tomorrow. And what we learn tomorrow may turn today’s knowledge on its ear.
I also recognize that the story we construct around scientific observation may be filled with bias that can do real harm and, as Jennifer Brea so astutely points out, may cause us to miss a cure for a very real disease.
It can be difficult to develop a narrative most likely to cure. Some physical illnesses have associated psychological components. Sometimes depression is a reasonable response to the altered life circumstances we face from physical illness. Some wounds to the psyche manifest as somatic symptoms. There’s no doubt it’s complicated.
Just because it’s complicated is no reason to take a shortcut, rely on assumptions, perpetuate myths, or be dismissive of a patient because they have something outside your realm of expertise or experience. Perhaps my greatest disappointment with the medical community came when no one seemed remotely curious why I got pneumonia every time I stopped taking antibiotics and why I had continual symptoms in between rounds of pneumonia.
I wanted someone to be curious to solve my puzzle. I thought that’s how diagnostics worked. I believed getting curious and trying to figure things out were a large component of practicing medicine. I believed that until the point at which I read my medical charts. It was an eye opening experience.
If you have an autoimmune disorder or auto-inflammatory disorder like MS, Celiac Disease, Lupus, CREST Syndrome, or Moersch-Woltmann syndrome, it may take months or even years to get an accurate diagnosis. The same is true of ME/CFS and many other chronic conditions – even common ones.
A study published in 2007 in The International Journal of Clinical Practice (found here on Pub Med) found “The under-diagnosis of common chronic diseases in the developed world ranges from about 20% for dementia and cirrhosis to 90% for depression and osteoarthritis. The delay in the prompt diagnosis and initiation of treatment is associated with increased morbidity and mortality for most of the reviewed diseases.”
There are models of hope: A movement toward Patient and FamilyCentered Care makes the patient part of the care team. Translational Research embraces the input of patients and the community as it seeks to implement scientific research into patient care. Systems that value the input of patients can help shift the story that is told about a disease.
Systems that invite curiosity, innovative thinking, imaginative approaches, and new information (even that which challenges current beliefs) rather than treating them as threats could vastly improve diagnostics and treatment plans.
I view curiosity, a willingness to question, and the willingness to sometimes be wrong as confident qualities. I don’t believe that any physician will have all the answers. That would be unrealistic.
What I do hope for is physicians who are willing to exhaustively pursue knowledge that will help their patients. I hope for doctors who ask good questions. I long for a system that is not dismissive of ANY patient. I hope for physicians who can embrace and incorporate other opinions. I wish for practitioners with enough strength, character, and perspective to recognize areas in which they may be biased and with enough courage to question themselves.
“You can miss a cure because people are telling the wrong story about you.” – Jennifer Brea
Until we begin to question our stories, how many cures are we missing?
Resources
https://www.unrest.film/
https://www.cdc.gov/me-cfs/about/index.html
https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs
https://www.meaction.net/about/what-is-me/
http://www.meassociation.org.uk/about/what-is-mecfs/
https://multiplesclerosis.net/living-with-ms/portable-history-ms/
https://www.ncbi.nlm.nih.gov/pubmed/17686096
Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”
