There are four main barriers to compassionate care: ignorance, the nature of the illness, financial constraints, and difficulty visiting the doctor.
Barrier One: Ignorance
When it comes to helping people with ME/CFS, many medical providers are operating in a state of unintentional ignorance. Lack of information, training, educational resources, and the necessary time to dive into the complexities of the illness combine to create this barrier.
It is critical to seek out specialists that are used to dealing with complex illnesses and listening to patient perspectives. Some specialists only run tests, and while this can be useful for diagnosing a specific symptom, it is not useful for understanding the everyday reality of ME/CFS, which can come only through carefully listening to the patient.
One useful resource ME/CFS specialists have developed is a four-page document that overviews the basics of ME/CFS. We encourage people with ME/CFS to give medical providers this document to assist in explaining the illness.
Patients should also be flexible with doctors that might use different terminology to describe ME/CFS, such as Lyme disease and post-viral disease.
Barrier Two: The Nature of the Illness
ME/CFS is difficult to explain and even harder to medically evaluate. Patients can help overcome these barriers by practicing and building skills in explaining the illness.
When doctors ask about symptoms in intake forms, make sure to emphasize fatigue, weakness, neurological symptoms, and abnormal weight loss or gain. Many also find it helpful to rate their symptoms, with 0 meaning the symptom is absent or unimportant, 1 meaning the symptom is mild or infrequent, 2 meaning the symptom is moderate or frequent, and 3 meaning the symptom is severe or near-constant. This is a concise way to communicate each symptom severity in a doctor-accessible format.
Communication also improves when patients use specific language, such as “hot, tight, and stabbing,” in place of vaguer words like “inflammation.” Instead of saying, “I hurt,” say, “here is the context, timing, frequency, duration, severity, and type of pain I experience.”
Finally, give specific examples of your pain and distinguish between, “I feel too sick to do something I really enjoy,” “I develop symptoms while doing this…,” and, “I develop symptoms after I do this…”
Barrier Three: Financial Constraints
The topic of financial constraints in patients with ME/CFS is too complex to address as a sub point in a lecture. However, understanding medical providers’ financial constraints helps us work effectively within the medical system.
Medical providers are incredibly pressured to work quickly and efficiently. A doctor who takes too much time may find their pay docked or promotions denied. Therefore, it’s key that we help doctors be more efficient.
There are many strategies for using time efficiently. First, schedule brief, frequent appointments instead of expecting long appointments. In each appointment, address only one or two symptoms so the doctor has the space to process the information. Arrive early or on time to appointments, and bring a current list of medications and what medications you’ve tried in the past.
Most importantly, clearly state your main purpose for the visit at the beginning, instead of bringing it up later in the meeting.
Barrier Four: It’s Hard to Go to the Doctor
People with ME/CFS, especially the severely ill, may experience significant symptoms from the effort it takes to go to the doctor.
There are simple strategies for managing symptoms: save up energy for the visit, use wheelchairs where possible, rest after the visit, use ear protection and sunglasses if sensitive to noise and light, and have friends and family gather the needed information for the doctor.
In addition, doctors can sometimes be contacted without leaving the house. Some doctors will do home visits on request, and insurance is increasingly covering telephone doctor “visits.” Short-term nursing services are also available for bad crash periods.
In summary, while there are many barriers to accessing quality care, it is possible to reduce these barriers through specific strategies. More information for medical providers can be found at: http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx
We are grateful for Doctor Bateman’s thoughtful insights. We encourage you to read other education meeting summaries for more practical strategies on handling ME/CFS.
If this content is helpful to you or a loved one, please consider donating to help us pursue more compassionate, quality care for people with ME/CFS.