The US National Institutes of Health (NIH) has announced a $246,000 grant to study the use of an oral solution of isotonic saline to reduce orthostatic intolerance (OI) in ME/CFS patients.
The grant has been awarded to New York Medical College’s Professor Marvin Medow, who has long had an interest in OI in ME/CFS, particularly in young people. The money comes via the National Institute of Neurological Disorders and Stroke (NINDS), which is the current leader of the ME/CFS trans-NIH Working Group at the NIH.
Most patients with ME/CFS have OI, defined as the inability to maintain an upright posture without developing symptoms. Patients whose heartrate increases excessively on standing have postural tachycardia syndrome (POTS), while those whose blood pressure falls excessively have neurally mediated hypotension (NMH).
Both are caused by a failure of the body’s normal ability to prevent too much blood being pulled by gravity from the brain and heart upon standing. The cause of OI in ME/CFS is unknown. Intravenous saline is an effective treatment but has risks if used long-term.
Usual methods of oral hydration have not been as effective but Professor Medows noticed that the isotonic oral rehydration solution (ORS) used by the World Health Organisation (WHO) is effective in rehydrating cholera patients, which suggested to him that it might be as good as, or better than intravenous saline for OI.
Professor Medow has already made preliminary physiological measurements of ME/CFS patients with OI that indicate that ORS is better than intravenous fluid in restoring orthostatic tolerance.
In the study, he and his team will examine the physiology of 15 ME/CFS POTS patients, 15 ME/CFS NMH patients and 15 healthy controls in response to both intravenous and oral fluid loading during orthostatic stress. Each participant will be rehydrated with each method a week apart, in random order.
The WHO ORS is a solution that includes glucose and sodium and is available online via, for example, Amazon (US). Recipes can also be found online. However, there are risks with taking on more fluid than the body is equipped to handle and this intervention should not be attempted without medical supervision.
Professor Medow’s project is due to complete by January 2018.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the