MECFS Low Perfusion & Orthostatic Intolerance : Why Hydration Matters

What Is Orthostatic Intolerance?

Orthostatic intolerance (OI) is the inability to regulate blood flow to the brain, blood pressure, and consciousness when sitting or standing.

Common symptoms of OI include:

-Dizziness, blacking out or fainting

-Nausea

-Headache

-Tachycardia

-Unpredictable blood pressure

There are many types of OI including

-Postural Orthostatic Tachycardia Syndrome (POTS)

-Orthostatic Hypotension

-Neurally Mediated Hypotension

&

-Vasovagal Syncope (Fainting)

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Low Brain Perfusion & Orthostatic Intolerance Is Almost Universally Present In MECFS

Van Campen et all found in a 2020 study* of over 400 MECFS patients that cerebral blood flow (blood flow to the brain) was significantly reduced upon tilt-table testing even in patients without POTS. The reduction in cerebral blood flow was strongest in patients who reported symptoms of orthostatic intolerance in daily life.

90% of patients with ME showed reduction in blood to the brain. Even the group only including those with normal heart rate and blood pressure had significant blood flow reductions.

A further study** found that these cerebral blood flow changes could be provoked merely by sitting in severe patients.

*https://pubmed.ncbi.nlm.nih.gov/32140630/

**https://www.mdpi.com/2227-9032/8/4/394/htm?

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Causes of Orthostatic Intolerance

Orthostatic Intolerance in MECFS is theorized to be caused by two factors

1.) Low Blood Volume

This means that there is not enough total blood in your body. Thus leading to less blood flow to the brain and symptoms of OI.

2.) Poor Blood Vessel Tone & Constriction

This means that blood vessels in the body do not constrict properly leading to less ability for your body to properly control where your blood flows. This can lead to pooling of the blood in the legs and difficulty accepting blood in the brain.

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Orthostatic Intolerance Is Due Not To Deconditioning

A 2021 study* by Van Campen's team found that deconditioning did not explain orthostatic intolerance based on the fact that abnormal cerebral blood flow was found in patients regardless of their peak VO2 (a proxy for deconditioning) on Cardiopulmonary exercise testing.

This means that orthostatic intolerance is not just a consequence of patient's inability to exercise. Rather the opposite, patient's inability to exercise is at least in part influenced by orthostatic intolerance.

*https://translational-medicine.biomedcentral.com/track/pdf/10.1186/s12967-021-02819-0.pdf

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Brainstem Perfusion

A study by D C Costa from 1995* found decreased brainstem perfusion consistently in 24 initial and 16 follow-up ME patients. The patient has "marked and constant" reductions in blood flow to the brainstem which controls vital functions such as consciousness, heart rate, blood pressure, sensory input and sleep. Brainstem perfusion was significantly reduced compared to health controls, controls with depression and controls with seizure disorders.

A 2021 meta-analysis** of MRI studies on brainstem involvement in ME concluded that despite only a decade of study "the research published so far has demonstrated the critical involvement of the brainstem in ME/CFS associated deficits."

*https://pubmed.ncbi.nlm.nih.gov/8542261/

**https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8718708/

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Treating Low Blood Volume

Treating low blood volume is the easiest way to address orthostatic intolerance. Raising blood volume involves two ingredients:

1.) Salt

Salt can be added through dietary changes, or through supplements and electrolyte powders. If you are consuming very large amounts of salt it is best to use a salt stick supplement or electrolyte powder containing sodium and potassium to avoid throwing off your electrolyte balance.

2.) Water

Should be increased to 2-3 liters per day. Some doctors recommend using two water bottles one for sipping throughout the day and another "chugging" bottle for drinking large amounts at once.

In addition to increasing hydration, some medications like fludrocortisone can be used to help retain fluid increasing blood volume.

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Improving Circulation

To improve circulation compression garments can be used to stop blood from pooling in the lower extremities and instead encourage blood flow to the organs and brain. Compression stockings or full leg compression can be used to this effect.

In addition to physical interventions, medications like midodrine can be used to tighten blood vessels which can help improve circulation.

Finally doing exertive cognitive or physical activities in a reclined position and elevating the feet whenever possible will also reduce stress on the heart and improve symptoms.

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Creative Solutions For Better Oral Hydration

The goal of drinking 2-3 Liters of oral fluids with adequate electrolytes can be very difficult to achieve for more severe patients due to movement restrictions and fewer waking hours.

Retaining the fluid you drink is just as important as drinking a lot. The amount of electrolytes necessary for many ME patients is extremely challenging to meet with dietary changes alone, WHO oral rehydration salts, salt pills, and electrolyte drinks are a crucial element to add if you are struggling with oral hydration.

To increase the ability to drink, the hydra pack or hydrant systems allow for a bottle or bag of water to be placed above head height with a long straw and bite valve. A siphon effect removes the effort of sucking water through the straw. These systems can greatly increase oral hydration.

For those who still cannot meet hydration goals, a feeding tube can be used to deliver oral rehydration solution continuously over the course of the day and night. This carries much lower risk than the final option, IV fluids.

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IV vs Oral Hydration

A study by Marvin S Marlow found that the world health organizations recipe for oral rehydration solution (ORS) was roughly as effective as IV fluids in children with POTS.*

IVs or longer term IV fluid solutions like PICC lines and Ports carry significant risk of life-threatening sepsis infections so should only be turned to as a last resort.

However, some patients with MECFS and POTS find that IV fluids are significantly more effective for them than oral rehydration. In these cases, a careful conversation should be had with the managing doctor to make sure patients understand the trade-off between quality of life and risk of deadly infection. Depending on a patient's mobility, travel to an infusion clinic for IVs may be chosen or a line may be inserted in the hospital which can be used to deliver fluids at home. Careful management of ports or PICCs can greatly reduce infection risk, so patients should take sterile procedures very seriously.

All manner of creative solutions should be tried prior to IV fluids. Medications for tachycardia such as beta blockers or Ivabradine should be utilized before IV fluids.

*https://pubmed.ncbi.nlm.nih.gov/31405524/

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Hypovolemia or Low Blood Volume is a common and well documented problem in Myalgic Encephalomyelitis. It also happens to be an area we can actually treat!

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Low blood volume can cause forms of dysautonomia like Orthostatic Hypotension(Low Blood Pressure) when sitting or standing up) as well as Postural Orthostatic Tachycardia Syndrome or POTS a fast heart rate triggered by upright posture.

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It can also contribute to Brain Fog Cognitive Dysfunction and Chronic Headache.

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There are many ways to adress low blood volume from simple lifestyle interventions like increasing electrolyte consumption with drinks or salt pills as well as the use of compression Stockings.

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More invasive options include continuous saline given through a feeding Tube IV or CentralLine such as a PICC or PortACath.

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While treatment of low blood volume is most often indicated by dysautonomia, an umbrella of neurological and cardiovascular disease affecting the autonomic Nervous System and causing abnoral heart rate and blood pressure readings, treating low blood volume can also be extremely helpful for more vauge symptoms like chronic Fatigue and even muscle cramps and pain.

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Low blood volume is only one piece of the ME/ CFS puzzle. Treating it is not a cure for the disease. But it is a valuable area to discuss with your physician and pay attention to in order to maximize your functionality and quality of life.