Cardiology info specific to Myalgic Encephalomyelitis

The more we know…

Several years ago, a Facebook group I admin worked together to create information sheets about ME.  The info sheets were created to help group members better understand ME and provide something to hand to our doctors to help them improve our care.  Links to these info sheets can be found in the ME-ICC Info group’s Table of Contents.  Many of those info sheets are based on information from the ME IC Primer.

One of those info sheets is aimed at cardiologists and electrophysiologist (EP) cardiologists.  

Per Cleveland Clinic:

“An electrophysiologist (EP) is a doctor who’s an expert in diagnosing and treating issues with your heart’s electrical system. A type of cardiologist, they can do testing to find which area in your heart is causing a problem with your heart rhythm.”

In some cases a referral to an EP cardiologist must go through a regular cardiologist who screens for cardiac issues not related to the heart’s electrical system.  In my experience, EP cardiologists are more likely to have training in dysautonomia and offer treatments that help manage some of the cardiac issues seen in ME.

A nearby cornfield after harvest. Difficult to see but there is a herd of deer running through the field.

In recent years, there has been a lot more research into the cardiac issues seen in ME.  Much of it reaffirms what some of the expert clinicians have been discussing for many years.

In July a paper was published that did a comprehensive overview.  This paper, Cardiovascular and haematological pathology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A role for viruses, brought together a lot of what we currently know about cardiac issues in ME. I discussed this paper in a July article, Cardiac issues in Myalgic Encephalomyelitis.

I have again collaborated with group members to recreate the cardiac info sheet for ME using the updated knowledge provided in that recent paper.  A special thanks to my husband for helping to sort through all the references and finalize the document.

PDF of the Cardiac Info Sheet found HERE.  Link:  https://tinyurl.com/3zxcjjpe

Some of the topics discussed includes the following:

• Cardiac output reduced

• Dysautonomia

• Endothelial dysfunction

• Venous return issues

• Hypovolemia

• Left ventricular issues with “small heart” 

• Arterial wave reflection is inversely associated with left ventricular systolic function

• Clotting dysregulation & fibrinaloid microclots 

• Blood findings

• Acetylcholine - elevated response to acetylcholine 

• Exertion intolerance 

• Abnormal Holter readings

• Reduced HRV during sleep

The sheet also includes some testing and treatment information.  It is fully referenced and includes forms to enter personal heart rate, blood pressure and heart rate variability data that may offer valuable insight about your heart for your cardiologist.

Please note this information is written for cardiologists and much of it may not be easily understood.  If anyone is interested in helping put together a simplified version for non medical professionals, please let me know.

Someday there will be as much understanding about managing ME as there is about managing multiple sclerosis, Parkinson’s and other difficult to diagnose and treat diseases.  Until then, we need all the tools we can find.

Colleen

Information provided here or in comments is not to be considered medical advice

Sources:

The National Library of Canada Cataloguing-in-Publication Data: Myalgic Encephalomyelitis – Adult & Paediatric: International Consensus Primer for Medical Practitioners. ISBN 978-0-9739335-3-6

Nunes JM, Kell DB, Pretorius E. Cardiovascular and haematological pathology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A role for viruses. Blood Rev. 2023 Jul;60:101075. doi: 10.1016/j.blre.2023.101075. Epub 2023 Mar 20. PMID: 36963989; PMCID: PMC10027292.