Dr. Per Sjögren is a researcher at the Braggee Myalgic Encephalomyelitis Clinic (Sweden) and a winner of a Patient-Led Research (PLRC) grant for his work on ME/CFS (cervical spine operations to relieve ME/CFS symptoms). Now, his team has published a case series showing how intravenous saline treatment can reduce dysautonomia for people with ME/CFS.
Dysautonomia affects the nervous system’s automatic functions, like regulating blood pressure or heart rate. Serious and debilitating symptoms of dysautonomia are common among people with ME/CFS. These symptoms can be driven by significant loss of body fluids or by poorly circulating fluids (e.g., blood pooling in legs, too little blood returning to the heart). Saline solution delivered intravenously can boost body fluids and quickly relieve symptoms of dysautonomia, as seen for people with orthostatic intolerance or POTS (two conditions common among people with ME/CFS).
In this study, the team tested whether three doses of intravenous saline, given over nine weeks, helped 22 people with either ME/CFS and dysautonomia or ME/CFS and low body fluid levels. They found that the treatments significantly reduced symptoms, especially symptoms of dysautonomia and POTS; significantly increased ability to work; and significantly improved overall quality of life. Treatments most benefited people who were the most dehydrated at the start, suggesting that the treatment worked by replenishing fluids.
However, intravenous saline treatments did not help all participants. And while many patients “felt” better after each treatment, they still performed poorly on tilt table tests and still had POTS at the end of the nine-week course. This is consistent with earlier reports of intravenous saline therapy only temporarily relieving orthostatic intolerance–related symptoms and POTS. In a follow-up questionnaire completed a week after the last dose, 8 of the 19 participants wanted to keep getting infusions, but 10 were unsure.
The authors noted that more work is needed to understand whether intravenous saline therapy can more durably reduce symptoms for people with ME/CFS and dysautonomia. Continual intravenous treatment is impractical because it needs a central venous catheter (a port), which can cause serious complications. (In contrast, the intermittent treatments in this study caused no serious adverse effects.) Other possibilities for intravenous saline treatment to more durably reduce symptoms include combining these treatments with other types of targeted treatments; tailoring saline schedules, solutions, and volumes for each patient; and targeting the faulty mechanisms driving fluid loss, instead of just intermittently replenishing the lost fluid. For example, Dr. Sjögren’s team recently found that many people with ME/CFS have unusual levels of vasopressin, a hormone that controls how much water is lost through urine. Thus, treatments that regulate vasopressin levels may be a better long-term solution for people with dysautonomia and ME/CFS than treatments to replenish fluids. Future clinical trials could address these important questions.
This study appears in the journal Frontiers in Neurology.
Why This Study Matters to the Patient Community:
- Indicates Key Questions for Future Clinical Trials: These include finding best intravenous saline doses and schedules for different patients; how to combine intravenous saline treatment with other targeted treatments; and whether treatments that help the body to retain fluids are more effective than those that replenish lost fluids.
- Validates Key Symptoms of ME/CFS: Addresses serious and debilitating symptoms of orthostatic intolerance and POTS, which affect many people with ME/CFS.
- Centers Patient Experience: Applies strategies used by people with other conditions of dysautonomia to help people with ME/CFS.
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