In the online event panel by Human Health Project “Understanding Your Patient Rights,” held on August 13, 2021, panelist Terry Wilder from the US, talked about her experience with her own personal illness with myalgic encephalomyelitis, also known as chronic fatigue syndrome. Terry noted that the symptoms due to her myalgic encephalomyelitis were severe, including having symptoms of pain and exhaustion. Despite her illness, Terry talked about the importance of activism and giving back to one’s community. She discussed her experience as an activist in the LGBTQ community and helping those affected by HIV. Terry also made some important general points regarding diversity, equity, and inclusion, as well as activism. In regard to diversity, equity, and inclusion it is always important to be able to treat all patients with respect and equality. 

In addition, Terry also made an important point regarding activism, as she stated, “Activism is fundamentally about power. It is action people take, individually and collectively, to challenge power imbalances and create positive change.” It is precisely this notion of challenging power to create positive change that has led Terry to be an effective activist in her own life. 

In addition to Terry, another panelist Orla Ni Chombri from Ireland also discussed her experience with  myalgic encephalomyelitis, including the symptoms such as pain and exhaustion and medications she uses to help relieve symptoms. Orla also discussed health services organizations based in Ireland that could also be effective resources for patients living with myalgic encephalomyelitis, including the Patient Advocacy Service and the National Advocacy Service. 

In addition, panelist Wilhelmina Jenkins from the U.S., discussed her experience with myalgic encephalomyelitis, and also explained that her daughter had also suffered from the disease. Since myalgic encephalomyelitis is sometimes mischaracterized as a psychological disorder, Wilhelmina discussed the importance of the right to be believed, heard, seen, and understood regarding sharing symptoms for the disease. The right to competent and compassionate healthcare was also another significant point that Wilhelimia addressed for all patients. She also discussed the right of autonomy in regard to a patient to take control by deciding how he or she lives with myalgic encephalomyelitis.  Finally, panelist Emily Taylor, Director of US based Advocacy and Community Relations at Solve M.E., discussed how myalgic encephalomyelitis affected both her and her mother. Emily also discussed the significance of the role caregivers can have, including support from family and loved ones, to help those individuals and patients who are suffering from myalgic encephalomyelitis.

More information about the HHP online event, “Understanding Your Patient Rights,” can be found here: 

https://sqa.humanhealthproject.org/event/understanding-your-patient-rights-with-a-focus-on-me-cfs/