Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline: A case study (Davenport 2020)

[Murph]

Cardiopulmonary responses to exercise in an individual with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during long-term treatment with intravenous saline: A case study

Article type: Research Article
Authors: Davenport, Todd E.*; a; b | Ward, Michael K.a | Stevens, Staci R.b | Stevens, Jaredb | Snell, Christopher R.b | VanNess, J. Markb; c
Affiliations: [a] Department of Physical Therapy, School of Health Sciences, University of the Pacific, Stockton, CA, USA | Workwell Foundation, Ripon, CA, USA | [c] Department of Health, Exercise, and Sport Science, College of Pacific, University of the Pacific, Stockton, CA, USA

Abstract:

BACKGROUND:Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) causes significant impairment in daily activities, including the ability to pursue daily activities. Chronotropic intolerance is becoming better characterized in ME/CFS and may be the target of supportive treatment.

OBJECTIVE:To document the effect of repeated intravenous (IV) saline administration on cardiovascular functioning and symptoms in a 38-year old female with ME/CFS.

METHODS:The patient received 1 L of 0.9% IV saline through a central line for a total of 675 days. Single CPETs were completed periodically to assess the effect of treatment on cardiopulmonary function at peak exertion and ventilatory anaerobic threshold (VAT). An open-ended symptom questionnaire was used to assess subjective responses to CPET and self-reported recovery time.

RESULTS:Improvements were noted in volume of oxygen consumed (VO2), heart rate (HR), and systolic blood pressure (SBP) at peak and VAT. Self-reported recovery time from CPET reduced from 5 days to 1–2 days by the end of treatment. The patient reported improved quality of life related, improved capacity for activities of daily living, and reduced symptoms.

CONCLUSIONS:IV saline may promote beneficial effects for cardiopulmonary function and symptoms in people with ME/CFS, which should be the focus of formal study.
Keywords: Treatment, exercise testing
DOI: 10.3233/WOR-203214
Journal: Work, vol. Pre-press, no. Pre-press, pp. 1-7, 2020
Received 13 September 2019
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Accepted 29 March 2020
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Published: 27 June 2020

 

[Murph]

INtriguing but not exactly a low impact intervention!

 

[junkcrap50]

Full paper: https://sci-hub.tw/https://content.iospress.com/articles/work/wor203214

 

[Sad Dad]

Before anyone reads anything into this, the sample size was one patient!

 

[andyguitar]

Before anyone reads anything into this, the sample size was one patient!

Dr David Bell uses saline as a treatment for me/cfs. Reports it is helpful.

INtriguing but not exactly a low impact intervention!

But if others benefit from it there may be some clues as to what is causing me/cfs.

 

[Gemini]

Dr David Bell uses saline as a treatment for me/cfs. Reports it is helpful.

@andyguitar, glad you mentioned Dr. Bell who with the late Dr. David Streeten did the pioneering research on low blood volume in ME/CFS years ago.

Later, Vanderbilt researchers tried, unsuccessfully, to determine its cause using as a model astronauts who develop low blood volume while in space which resolves when they return to earth's gravity.

The long-term saline treatment here may shed light on the cause which would be helpful.

Interestingly, Harvard's Dr. David Systrom is giving saline as part of his invasive CPET study. It would be nice if he tested his ME/CFS patients for low blood volume before and after his treatment interventions.

 

[Sad Dad]

Before anyone reads anything into this, the sample size was one patient!

I'm not saying it might not help some patients. My daughter tried it, and it had no effect. My point is simply that if her doctor wrote a paper based solely on her experience, the conclusion would have been that it was completely ineffective. With a disease as mysterious as ME/CFS, individual patients are helped by all kinds of things. The internet is full of stories of people who have "cured" themselves in all kinds of odd ways.

 

[Cort]

Fascinating that it worked so well. I'm pretty sure that an IV saline study is underway in ME/CFS. I think it's more important as an indicator of something rather than a treatment although many people have been helped at least temporarily by saline.

https://www.healthrising.org/treati...fective way to measure blood volume in ME/CFS.

 

[junkcrap50]

Fascinating that it worked so well. I'm pretty sure that an IV saline study is underway in ME/CFS. I think it's more important as an indicator of something rather than a treatment although many people have been helped at least temporarily by saline.

https://www.healthrising.org/treating-chronic-fatigue-syndrome/drugs/iv-saline-solution-for-chronic-fatigue-syndrome-mecfs/#:~:text=Outside of chronic fatigue syndrome (ME/CFS) saline solution,effective way to measure blood volume in ME/CFS.

From Cort's links:

A 2017 study found that intermittent saline IV’s over a year significantly reduced symptoms and improved quality of life in postural orthostatic tachycardia syndrome (POTS) patients.

Remarkably, 50% of the study participants didn’t feel they needed the IV’s anymore – suggesting that regular use of saline IV’s in POTS may be able to eradicate the disease in some. The authors believed the IV’s allowed the POTS patients to exercise, overcome the deconditioning present, and basically work their way out of the illness.

Dr. Bell noted that a year of daily 1 liter saline infusions had enabled a severely ill CFS patient who had been undergoing seizures (which had been characterized as psychological in nature) to return to full-time work.

"With the first bag of saline the “pseudo-seizures” stopped and did not return. At three months of daily infusions of 1 liter of normal saline, she was able to be up and around the house for several hours a day. At six months of treatment she was able to volunteer at her church for three hours a day. At one year of infusions she returned to full time work and has remained working for nearly five years."​

Saline solution’s effects are, however, usually temporary resulting in a return of symptoms when the treatment is stopped. Dr. Bell reported that 75% of the 25 patients he’d tried saline solution on had improved.

Many people have reported significant increases in energy and reduced symptoms following saline. One person with ME/CFS suffering a severe relapse after being given general anesthesia for an operation reported being revived 5 weeks later after being given saline solution.

Seems like there was good indication to give the patient in the case study daily IV saline. Perhaps very long term use can reverse symptoms permanently.

 

[nryanh94]

Interestingly I feel slightly better after I’ve had quite a bit of blood drawn.

 

[bread.]

Interestingly I feel slightly better after I’ve had quite a bit of blood drawn.

adrenaline.

 

[Oliver3]

adrenaline.

I'm part of the 'magnesium advocacy group' Their protocol insists you have blood draws frequently to get rid of unbound oxidised iron as this damages mitos and tissue. I have noticed the same thing, that i feel better after a draw.
Don't know if the above is correct or not.

 

[bread.]

I'm part of the 'magnesium advocacy group' Their protocol insists you have blood draws frequently to get rid of unbound oxidised iron as this damages mitos and tissue. I have noticed the same thing, that i feel better after a draw.
Don't know if the above is correct or not.

how severe are you? how much blood how often?

 

[Hopeful2021]

I'm not saying it might not help some patients. My daughter tried it, and it had no effect. My point is simply that if her doctor wrote a paper based solely on her experience, the conclusion would have been that it was completely ineffective. With a disease as mysterious as ME/CFS, individual patients are helped by all kinds of things. The internet is full of stories of people who have "cured" themselves in all kinds of odd ways.

I don't think saline is the best IV.
Wish they could compare iv nutrients.
Super helpful.

 

[Chelby]

I have severe ME and have been receiving 2L of saline per week for just over 12 months. It has improved my orthostatic tolerance, cognitive function and energy envelope. I have not fainted since starting. Before starting I was on a slow constant decline in functioning. It has helped me more then any supplement I have taken.

Before the saline, I usually had cold lips and blue tinged fingers and struggled to sit for even one minute. I could not stand, I had to transfer bent over and pee with my head between my knees. I had to have cool flat baths. I was short of breath whenever upright.

Now the first 5 days after an infusion I can stand long enough to wash my hands. I can sit upright to 45 degress (with legs up).

This has been a magnificent benefit to my mental health as I can go for short walks in a tilt in space power chair now and be out of bed.

The first infusion I felt what I can only describe as high. My lips felt warm again and my vision became saturated with colour. My head felt buzzed and I could think much more clearly - but really I was just getting blood to my head and damn that feels good.

I still have severe POTS and ME. But the improvement in my quality of life and ability to get out of bed has allowed me to be a part of the world. Best of all is I have improved a little instead of continued to get worse. I believe I would be bed bound now without the infusions.

 

[Hopeful2021]

@Chelby great post about your IV saline.
I've been getting IV NAD and IV nutrients and IV glutathione and IV phosphatidylcholine regularly -- one of those options- for almost a year now.
Mainly the IV NAD.

The IV NAD we started in tiny dose and slowly worked up. It was at consecutive day treatments where I really discovered I could have "true" energy back.
(Well.... it was all IV dependent)
Now, after almost 11 months, I get NAD IV once a week.

 

[junkcrap50]

The IV NAD we started in tiny dose and slowly worked up. It was at consecutive day treatments where I really discovered I could have "true" energy back.
(Well.... it was all IV dependent)
Now, after almost 11 months, I get NAD IV once a week.

How many infusions of NAD did it take before you noticed benefits?

 

[Chelby]

@Chelby
I've been getting IV NAD and IV nutrients and IV glutathione and IV phosphatidylcholine regularly -- one of those options- for almost a year now.
Mainly the IV NAD.

Happy to hear it is helping you,

Are you paying for it privately or were you able to get this covered? Would love to try this, but the commercial IV clinic's charge over $700 for a NAD infusion.

 

[Hopeful2021]

Happy to hear it is helping you,

Are you paying for it privately or were you able to get this covered? Would love to try this, but the commercial IV clinic's charge over $700 for a NAD infusion.

@Chelby
Out of pocket
Less of a dose is less.
But yes, it's expensive.
But there wasn't anything else that could help me as vastly as this. It's nice to have more abilities because of it.

There are ion patches available. 6 for about $275 fir a 400mg time release 4 hour patch. I'm not able to tolerate the adhesive anymore... but they are nice. The nasal spray is also helpful --- not as good as patch, but more helpful than sublingual or the powder or pilks which didn't help me back then. I'm going to try again.

 

[Hopeful2021]

How many infusions of NAD did it take before you noticed benefits?

@junkcrap50
Interesting user name there JunkC.
So first dose was small but could feel it helping my cranial nerves during the drip. And I craved more.
It took my doctor about two weeks to give me a substantial dose, think 300mg.
We were laughing about our super cautious approach and how it was at the 1,000mg dose almost a month later where I could keep for longer than 30 hours the benefits.

So I can't give you the answer you desire.