After the worst Ebola outbreak in Guinea, Sierra Leone, and Liberia the fatal virus has finally begun to retreat. Though many people have started a regular life, still 50% or more of the infected people suffer from many chronic illness. These include chronic headaches, debilitating joint pain, even eye problems that can progress to blindness.
Some doctors in the region have begun calling the suite of problems "post-Ebola syndrome" and they're developing clinics devoted to caring for Ebola survivors.
"Many of the symptoms being reported by survivors are non-specific and could be due to consequences of Ebola virus disease or other diseases. Plenty of other diseases common in west Africa, like Lassa fever or malaria, could be causing the physical symptoms. And symptoms like fatigue, anorexia, and insomnia could be caused by post-traumatic stress disorder," said Michael Sneller, an infectious disease researcher with the NIH.
The epidemiologists are not able to track down the exact symptoms caused by Ebola infection. Therefore the NIH in collaboration with Liberia's Ministry of health has launched the PREVAIL study that will ask 1,500 survivors about their symptoms and perform physical exams—eye tests, neurological evaluations, blood draws—to track symptoms.
"Importantly, PREVAIL won't just follow survivors. It will also follow control subjects who were never infected. If post-Ebola syndrome is real, that control group should report significantly fewer symptoms. This type of study of survivors, to my knowledge, has not and is not being done for the current epidemic," said Sneller, who is one of the lead NIH researchers on the study.
Tests for Ebola look for antigens to the virus in an infected person's blood serum, so while a person may be declared Ebola-free and sent home, the test could be missing reservoirs of the virus in other parts of the body.
"There may be virus persisting, and direct tissue damage could result from the infection itself. Ebola virus definitely hides out in the testes and eyes—that's why male survivors are encouraged to refrain from sex or use condoms for three months after their infections clear up. Hypothetically reservoirs could exist elsewhere in the body, like in the synovial fluid in the joints," said Clark.
It is an autoimmune disease and therefore even after the infection is cleared the immune system may remain active and will attack the foreign agents. This jibes pretty well with the joint pain that is a common complaint among survivors. "Joints have always been very vulnerable to overactive immune systems. In that case, immunomodulating drugs might be the best treatment" explained Qureshi, a neurologist.