I have watched my friends struggle with the aftermath of an ME diagnosis.
I learned about ME from a good friend whose daughter became ill 10 years ago. I tried to be a supportive friend, watching her search for an effective treatment, without success. Then, just last year, another friend’s daughter was also diagnosed with ME, shortly after becoming engaged. I watched this daughter struggle with her daily routine, unable to work, during what should have been the happiest time of her life, terrified that she would go down the aisle in a wheelchair. She then paid the price for her day of happiness when she spent two months after her wedding in the hospital, half of those in intensive care. Her doctors have struggled to help her, but her future is uncertain at best, her ability to start a family unclear.
I recently met a nurse named Jane who worked at the University of California/San Francisco Hospital (UCSF) for 20 years. A hardworking clinician and researcher, she became the Project Director for a national HIV research program. Diagnosed with ME in 1984, her disease progressed until she was unable to work, and she sought care from UC. UC was unable and unwilling to help her. Frustrated, she feels UC has let her down in her time of need.
My main advice: There is something you can do, please help people like my friends’ daughters and Jane to regain their lives by diagnosing and treating those with ME with compassionate and informed care.
– M’Liz C., friend of two pwME