Hypovolemia in Myalgic Encephalomyelitis
Low blood volume is a biological abnormality
Last week was the first week of Maeve Boothby O’Neill's inquest. I wrote about that HERE. She died as a result of Severe ME. I have not been up to joining the video link to view the inquest, so I appreciate those who have been posting under the hashtag "Maeveinquest". I have found the information very upsetting. The info clearly shows a systemic bias among those involved which led to unnecessary suffering and her death.
There have also been a lot of news stories and I am collecting links to those I come across on my personal Facebook page under the post of my Substack article mentioned above. I plan to write an article later about the outcome. (Update: that article is now published - Inquest into death of Maeve Boothby O’Neill)
If you want to catch up on the first week, David Tuller wrote about it HERE. He is attending in person.
IV (Intravenous) FLUIDS
Dr. William Weir testified on Wednesday. He is an expert in myalgic encephalomyelitis and provided excellent insight into what went wrong and ways Maeve could have been better supported.
In 2021 Dr. Weir and Dr. Speight co-wrote the paper ME/CFS: Past, Present and Future which offers a great deal of insight on how we got here, and how we can move forward. I wrote about that paper HERE. One of the things Dr. Weir brought up at the inquest was the usefulness of IV fluids. As I wrote about in my article, IV Fluids for Treating ME, I have found weekly IV fluids very beneficial.
As there is no transcript of the proceedings, my information is based on posts and articles published about the inquest. These are a few of the posts about low blood volume and IV fluids.
Carole Bruce posted on July 24
"Dr. Weir stressing low blood volume in #ME patients. It’s concerning that the vast majority of us are unable to access IV Saline at any time so, as I understand it, hypoxia is nearly always present. #MaeveInquest"
Paul Keeble ME/LC (@PaulRKeeble) on July 24 posted:
“Dr. Weir If patients get IV saline and nutrition with NJ [tube] most of severe patients gradually improve where their life is not threatened. #MaeveInquest”
ME Advocates Ireland posted on July 24:
"Important to note that Dr. Weir stresses here in the Q&A that if patients get IV saline & nutrition with NJ tube the most severe ME patients gradually improve where their life is not threatened."
NJ tube refers to nasojejunal (NJ) tube which is a tube through the nose into the small intestines for those who can’t get enough nutrition by eating.
ME & Low blood volume
We have known for decades that low blood volume affects people with ME.
The ME International Consensus Primer highlights the importance of recognizing low circulating blood volume.
“Vascular abnormalities suggest there is insufficient circulating blood volume in the brain when in an upright position, and blood may pool in the extremities.” (pg 6)
“Prior to surgery, alert the surgeon to important factors of ME: hypersensitivity to pharmaceuticals including anesthetics, low circulating blood volume, OI, NMH, low intracellular magnesium and potassium levels, rapid fatigability and elevated pain and fatigue levels. Ensure patients are well hydrated prior to surgery. Patients take longer to recover and may need extra time in the hospital.” (pg 20)
The article Circulatory Impairment in ME: A Preliminary Thesis, published in June 2016 on MEadvocacy’s website by Maryann Spurgin, offers insight into many of the issues with circulatory impairment seen in ME including the following:
“Much later, in the 1990's, Dr. David Bell's and the late Dr. David Streeten's joint work on low blood volume (hypovolemia) in ME was published [2, 3]. Dr. Streeten was a world-renowned endocrinologist whose area of specialization was blood pressure and orthostatic disorders.”
It may be that not everyone who has ME deals with low blood volume, but for those who it does affect it is something that can be treated.
The paper, Blood Volume Status in ME/CFS Correlates With the Presence or Absence of Orthostatic Symptoms: Preliminary Results, showed that in the small cohort of 12 ME-ICC patients that not everyone had low blood volume. According to the paper they were only able to study 12 patients because measuring blood volume is expensive. Measuring blood volume is not something most of us have access to with our regular medical care.
Knowledge is power. Without access to blood volume testing, it is important for doctors to use other ways to stratify their patients. Doctors can better serve ME patients by understanding that those who have difficulty tolerating an upright posture are at most risk for having low blood volume and will likely benefit from regular IV fluids.
“Adults with ME/CFS had a significantly lower blood volume if they had a clinical suspicion of OI compared to those without a clinical suspicion of OI, as well as a significantly lower blood volume compared to the expected value. The data suggest that accounting for symptoms of OI could enhance the detection of the subset with reduced blood volume.”
It is possible that IV fluids offer more than just increasing blood volume. I find the IV fluids reduce my pain levels and improve my digestion more effectively than what I can manage with oral hydration.
Recent research
A paper published in April 2024 may give insight into why people with ME have chronic low blood volume. This abstract, Low Vasopressin in ME/CFS, was published in the American Academy of Neurology Journals.
“The complex symptomatology of ME/CFS includes signs suggesting abnormal water homeostasis and hypovolemia. Since many patients report polyuria-polydipsia, we conducted an observational series of plasma and urine osmolality as well as plasma levels of vasopressin (VP) in consecutive patients diagnosed with ME/CFS according to the Canadian Consensus Criteria.”
“Our findings suggest that deficiency of vasopressin secretion is a fundamental measurable part of the disease mechanisms, which may underlie a number of symptoms in ME/CFS, including the common complaint of orthostatic intolerance.”
Hypovolemia is a state of abnormally low extracellular fluid in the body (more than just blood volume).
Polyuria is the excessive secretion of urine
Polydipsia is excessive thirst
We need to understand why this is happening in order to look for a viable treatment.
This is only the abstract but I was glad to see they used patients diagnosed using the Canadian Consensus Criteria (CCC). That gives me more confidence that the results apply to me personally.
Moving Forward
I look forward to learning more! Until then, IV fluids is an option that I would like to see recognized as a viable treatment for people with ME. Especially for those in the Severe ME category.
There are calls for medical professionals to create a protocol to manage Severe ME. I would like to see that protocol include IV fluids be administered to people with ME (in their homes) on a regular basis.
Until next time, I raise my glass filled with electrolyte drink in a toast:
Here’s to better days ahead!
Colleen
P.S.: (added March 2025) The article, A Momentary Pause in the Act Of Dying: Low blood volume in Myalgic Encephalomyelitis. It's shocking. An interview with David Bell, M.D., by Hillary Johnson, adds more insight into this issue of low blood volume.
Information provided here or in comments is not to be considered medical advice
Sources:
Weir, W.; Speight, N. ME/CFS: Past, Present and Future. Healthcare 2021, 9, 984. https://doi.org/10.3390/healthcare9080984
van Campen C. (Linda) M. C. , Rowe Peter C. , Visser Frans C.; Blood Volume Status in ME/CFS Correlates With the Presence or Absence of Orthostatic Symptoms: Preliminary Results; Frontiers in Pediatrics; Volume 6; 2018; https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2018.00352; DOI 10.3389/fped.2018.00352
Jin-Seok Lee, Wakiro Sato, Chang-Gue Son, Brain-regional characteristics and neuroinflammation in ME/CFS patients from neuroimaging: A systematic review and meta-analysis, Autoimmunity Reviews, Volume 23, Issue 2, 2024, 103484, ISSN 1568-9972, https://doi.org/10.1016/j.autrev.2023.103484
Thank you for your advocacy in behalf of ME patients. I am an RN who had to discover my own diagnosis after getting the worst flu of my life on 12/24/09 & descending into a living hell! Not a single doctor, nor I myself knew what was wrong with me for 2 years! So I spent the time I was cognitively & physically able to, researching my symptoms until I discovered the Nightingale foundation’s website! It was there that I discovered a textbook description of the multitude of symptoms I was experiencing & a diagnosis of ME & POTS! Before that I thought I was the only person in the world experiencing this mystery disease- that I had to be dying from, though not a single specialist, could find anything wrong with me!!
Thank God After being confined to lying flat for over a year, I learned about POTS! At my next appointment, I had the nurse check my orthostatic vital signs & my physician ran an infusion of normal saline into me right there in her office after I told her her about POTS! We watched my vital signs (High heart rate & BP) normalize Immediately afterwards! I started receiving infusions three times weekly, which took me from being forced to live flat in bed to being able to sit in a recliner & tolerate walking to the bathroom! I still receive them to this day, 12 years later, but have had to live through 3 different bouts of sepsis from Porta cath infections!
Thank you for this, Colleen. I’m not sure how, but I didn’t learn about Maeve until reading your post just now. I’m not sure where in the world you’re located, but I know that ME Action here in the U.S. recently worked with the Mayo Clinic to create training and resources for medical professionals anywhere, since none seem to learn about our illnesses in graduate school.