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Study Points to More Effective Treatment than IV Infusions for Low Blood Volume in OI, POTS

Just in the nick of time, we finish October with a post for Dysautonomia Awareness Month! Back in March of 2016, the Zebra Pit published a post about an upcoming study of oral rehydration salts (ORS) as an effective therapy for dystautonomia. The study was finally completed and published in July of 2019, in The Journal of Pediatrics. Learn about the results of the study, how it was conducted and what it said about the use of ORS versus that of saline infusions.

What is ORS?

Oral rehydration salts (ORS) are a mixture of glucose, potassium, and sodium. ORS was developed by the World Health Organization in the 1940’s to use as an oral rehydration therapy, in place of IV administration. When mixed with water, ORS has been proven to be effective to replace necessary electrolytes that have been lost to acute diarrhea or vomiting caused by diseases such as cholera. ORS is an essential medicine of the WHO, and has saved countless of lives that would have otherwise been lost.

Study Findings

In recent years, studies are starting to show that ORS can also be used as a short term treatment for those with Orthostatic Intolerance due to dysautonomia as well. The study sought to understand the efficacy of ORS and IV saline and whether it could increase blood volume, thereby reducing the effects of OI in the short term. In 2016, the NIH announced it was funding the study conducted by Dr. Marvin Medow, concerning the benefits of ORS with ME/CFS patients who have OI.

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Dr Medow tested a total of 35 people with OI and ME/CFS between the ages of 15 to 29. A portion were given placebo, while others received either a litre of saline intravenously, or an oral dose of ORS. After administration, the patients were placed in a lying position, with the lower half of their bodies covered in an airtight chamber,also known as an LBNP tank. The patients were then subjected to varying negative pressure. The pressure was gradually increased until each patient reached particular levels of OI. The testing was grueling: Most of the patients passed out at some point. My heart goes out to these patients and their bravery, but it seems their hard work has paid off. Not only did they prove both IV and oral rehydration salts to be quite effective in treating OI, but they figured out that one is actually more effective than the other:

Changes in normalized orthostatic index (% of that measured without treatment in control (black bars) and subjects with POTS with orthostatic intolerance (gray bars) measured following no treatment (Untreated), after infusion of IV saline, and after ingestion of ORS. Neither saline nor ORS increased orthostatic tolerance in untreated controls (P = .46; n = 15), whereas both IV saline and ORS significantly improved orthostatic tolerance (*P < .05 and **P < .001, respectively; n = 10) in subjects with POTS.” Dr. Medow, et al.

The study revealed that both saline and ORS are effective in the short term treatment of OI. However, the ORS, with it’s combination of sugars, potassium and sodium, was proven to be even more effective than the saline. While simple sodium can help raise blood volume, ORS still seems to be the better option, according to this study. Better yet, ORS is readily available, as well as affordable and it doesn’t require a visit to an infusion center or the use of ports and is obviously much less invasive, providing fewer risks than any venipuncture.

These concerns were what led Michelle to conduct her own study of the use of ORS to improve her POTS symptoms. Michelle has been taking ORS to treat her Orthostatic Intolerance (OI) for nearly three years. It’s proven to us that it can be quite effective and has been a staple in our household for a few years now! I even take it to help keep my own low blood pressure from becoming a problem.

ORS Caveats

Before jumping on the ORS bandwagon, it’s important to note that there are also some potential drawbacks to its use long-term that weren’t addressed in the short term study. Potassium is a very important substance for heart health, and it’s quite possibly part of the reason why ORS is more effective than IV saline, along with the glucose that it contains. However, potassium is something that needs to maintained within a certain range, as too much potassium can also have terrible side effects and fatal consequences.

High potassium levels in the blood can cause kidney failure, type 1 diabetes, Addison’s disease, or heart failure. Before starting any regiment of ORS you should consult with your doctor about whether or not this therapy is right for you and conduct preliminary testing, in addition to doing occasional spot checks to ensure your levels remain within a healthy range.

How often you need to supplement with ORS will largely depend on the individual and may take a bit of trial and error. Intermittent testing can help you get to the right level. For Michelle, who gets more potassium in her diet, it takes a lot more sodium than potassium, so she only supplements 1-2 x per week with ORS, while drinking water infused with sea salt and a small amount of glucose daily.

Some people may also have a hard time adjusting to the taste of ORS. Lucky for them, there are oral rehydration salts that also come flavored. Either way, you get used to the flavor and really come to appreciate the effects. In the end, Michelle decided learning to get used to salty beverages is by far preferable to higher risk, more expensive IV saline.

Where to Find ORS

Oral Rehydration Salts are easy to find, but not with the correct amounts of sodium, potassium and glucose. They also tend to focus more on flavor than quality and are not true WHO approved brands. Trioral brand is the only one I’ve found that is WHO approved and is conveniently available on Amazon:

Don’t need the potassium? Try putting up to a 1/2 teaspoon of natural sea salt into your water several times a day and add a little sweetener, which helps the body to absorb sodium. If you supplement with salt alone, you want to make sure it’s natural and not iodized table salt. You’ll also find you run through it quickly, so it’s good to buy in bulk. We like these brands and types:

No matter how you choose to supplement, it’s important for people with dysautonomia to get enough salt, glucose and potassium. As the highlighted study shows, it can have a huge impact on blood pressure levels, which means fewer dizzy spells on standing, less fatigue and improved symptoms over all. Sometimes medications are also needed to help manage this complex condition, but the first line of defense should also include these important electrolytes, which should be monitored periodically through testing. Remember, any and all changes to your healthcare regimen should be discussed with your care team first.

Do you already supplement with ORS or a similar product? What are some of the benefits you’ve found?

Resources and Further Reading

David Curtis lives in Florence, KY with his wife Michelle, 2 Russian Blue cats and his many fish. David manages the pet department of a prominent retail chain in addition to caring for his wife, pets and home. In his spare time, he enjoys reading, exploring history, watching football, sci-fi, fantasy or comic book shows and film, along with fighting for truth, justice, and the human condition. Much like Tyrion Lannister, he also drinks (coffee) and knows things.

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Friends in Australia’s parliament for people with ME and chronic fatigue syndrome

It’s heartwarming to see lawmakers in Australia giving ME/CFS patients serious consideration and support by forming a parliamentary friendship. This group will provide a forum for members of the House of Representatives and senators to meet and interact with representative groups and scientists studying ME and CFS. Congrats Australia!

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Younger Releases Preliminary ME/CFS Subset Study Results

Editor’s Note: This post was last rechecked and updated on 4/13/19. Thank you.


Jared Younger, one if the freshest minds on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome research seems to have already uncovered three distinct subsets of the illness. The first points to a distinctly viral kind which produces C reactive protein that corresponds directly with patient’s reported fatigue. The second subset’s fatigue correlates directly with changes to the immune system itself and may  be an unidentified immune deficiency or autoimmune disease, while the third is being caused by yet unknown factors requiring more investigation.

The video below provides greater detail from Younger himself and includes charts of the three different types.

If you prefer to read, this link to Cort Johnson’s excellent breakdown of the findings will help  you to better understand the overall ramifications and importance of the study.  I recommend taking a gander at both to fully understand and interpret this information.

This is the kind of break ME/CFS patients have been looking for for decades, as until we understand the subsets of this illness and their exact cause, no effective therapies can be developed to treat the millions of people suffering from this illness. I will continue to share information as it becomes available on this and other ongoing studies about ME/CFS and other spoonie-related illnesses. To ensure you don’t miss anything, follow me on Facebook or Twitter feeds, as I don’t always write everything up on my blog.

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