Background: Clinical practice and the medical literature abound with reports of mutual dissatisfaction between individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and health care practitioners.
In this paper we:
1) formulate and describe the common therapeutic challenges in the care of patients with ME/CFS and
2) present a patient-centered, collaborative practice model that may mitigate these challenges.
We have combined clinical experience with hundreds of patients, a thorough review of the medical and psychotherapy literature and comments from patients and colleagues to arrive at our proposed practice model.
Findings and Discussion:
We have identified six common therapeutic challenges listed below. From our experience and the psychotherapy literature we have identified a relatively simple patient-centered intervention for each therapeutic challenge. These interventions are recommended for health care practitioners who find themselves in difficulty while working with patients with ME/CFS.
- Disagreement about the validity and severity of ME/CFS – Validate the patient’s experience and openly discuss differences of opinion.
- Disagreement about the etiology and best management of ME/CFS – Find and validate the truth in the patient’s position.
- Frustration due to lack of improvement – Collaboratively search for hope.
- Altered power balance between practitioner and patient – Clarify and increase practitioner expertise.
- Working with patients who feel unheard – Listen to the whole story.
- Gap between needed and available services – Build a coalition to access needed services.
Therapeutic relationships with patients with ME/CFS can be rewarding and enjoyable. The interventions highlighted in this paper may assist practitioners who feel otherwise.
Improving the therapeutic relationships between patients with ME/CFS and health care practitioners Eleanor Stein MD, FRCP(C), Eva Stormorken RN, CRNA, MNSc, Bengt Karlsson RN