Today, there was a post in a local CFS group dealing with a variety of heart issues.  I believe that many patients and their physicians are unaware of a set of interacting conditions that often cannot be successfully treated in isolation. I though that a review of what we know about the CFS heart and blood may be a good review for myself and my readers.

POTS:

“Postural orthostatic tachycardia syndrome (POTS) is a heterogeneous disorder of the autonomic nervous system in which a change from the supine position to an upright position causes an abnormally large increase in heart rate or tachycardia (30 bpm within 10 min of standing or head-up tilt). This response is accompanied by a decrease in blood flow to the brain and hence a spectrum of symptoms associated with cerebral hypoperfusion.” [2016]  – SPECT scans of CFS patient usually show moderate to severe  cerebral hypoperfusion

Low Blood Volume

David Bell, M.D. did a study in 1995 (twenty years ago) finding about low blood volume. Cort Johnson has an 2015 update by Dr. Bell that is worth reading. “In contrast, ME patients have a volume that can be as low as 50% of normal.”

Change of Red Blood Cell Shape

Back in 1997, Dr. Les Simpson in New Zealand wrote “Myalgic Encephalomyelitis (ME): A Haemorheological Disorder Manifested as Impaired Capillary Blood Flow” observed this in CFS patients. “So it has been proposed – first at the Cambridge Symposium on ME in 1990 and in another article in 1998, that ME is a dysfunctional state resulting from reduced rates of capillary blood flow due to the presence of shape-changed, poorly-deformable red cells” [source]

Hypercoagulation – Thick blood

In 1999, Dave Berg, Hemex Labs published Chronic fatigue syndrome and/or fibromyalgia as a variation of antiphospholipid antibody syndrome: an explanatory model and approach to laboratory diagnosis. Thick blood means that instead of flowing like water, the blood may flow like maple syrup or ketchup.

Small heart size

“A considerable number of CFS patients have a small heart. Small heart syndrome may contribute to the development of CFS as a constitutional factor predisposing to fatigue, and may be included in the genesis of CFS.” [2008]

” Echocardiographic examination revealed that CFS patients with “small heart” had an actually small LV chamber and poor cardiac performance. Cardiac functional changes evaluated by repeated examinations appeared to be directly associated with the severity of their symptoms. Small heart syndrome with impaired cardiac function may contribute to the development of CFS through low cardiac output as a constitutional factor.” [2009]

SPECT – Hypoperfusion in the Brain

Single-photon emission computerized tomography (SPECT) scans are the most reliable for CFS. Cerebral blood flow is reduced in chronic fatigue syndrome as assessed by arterial spin labeling[2011]. Full Text

Low Iron

Hemoglobin is the iron-containing oxygen-transportmetalloprotein in the red blood cells of all vertebrates  Hemoglobin in the blood carries oxygen from the respiratory organs (lungs or gills) to the rest of the body (i.e. the tissues). There it releases the oxygen to permit aerobic respiration to provide energy to power the functions of the organism in the process called metabolism. [wikipedia]

Iron insufficiency and hypovitaminosis D in adolescents with chronic fatigue and orthostatic intolerance. Restless leg syndrome (RLS) is  negatively correlated with ferritin / iron [2012] and RLS is also co-morbid with CFS (i.e. the less iron, the more likely you will have RLS)

Condition Summary

Volume of red blood cell has decreased significantly. Red blood cells are less pliable so there are harder to move along. Coagulation has increased, making the blood harder to push along. Inflammation and vascular constriction has happen in blood vessels. Compounding this is a smaller pump (heart) size!

The body actually appears to try super-saturating the available (less than normal volume ) hemoglobin – “, a significant increase in oxyhemoglobin content, and a significant increase in the oxidation of heme a+a(3) and copper in cytochrome c oxidase in CFS patients.” [2009]

“This study has shown that there are objectively measured abnormalities of blood pressure variability in CFS and that these abnormalities have the potential to be a bedside diagnostic tool.” [2012]

Effectively the body is screaming from low oxygen (hypoxia). Rapid heart beat in an attempt to push through more blood. Restless leg is also an attempt to push more blood through by using the leg muscles to boost the heart. Pain in FM, brain fog in CFS are all symptoms of low oxygen delivery.

With the heart having to work harder constantly, side-effects will eventually show up.

Treatment Possibilities

Dr. Bell in his 2015 article describes positive experiences from blood transfusions. Posterior reversible encephalopathy syndrome secondary to blood transfusion[2015].

Reducing coagulation, reducing inflammation, vascular dilators, and a diet rich in the chemicals needed to produce red blood cells.

• Ivabradine  for POTS has potential, see my earlier post

Symptom Reduction

Hypobaric chambers, changing blood pH (acidity/base)  and oxygen masks will increase oxygen levels somewhat — but the root problem is not how much oxygen gets into the body (i.e. how much coal is mined) but the speed and quantity of delivery.

Personal Experience

Early in my treatment for my second episode with CFS, I pushed  my MD to take the coagulation aspect seriously. I read what the maximum safe dosage on an aspirin bottle was and proceeded to do exactly that every day  for the 10 days on the bottle.

After 5-6 days, I was running up the walls with energy. What is aspirin?:

• blood thinner
• reduces inflammation

At the same time, I had switched from expensive NADH tablets to regular flushing niacin (a vascular dilator) and had been satisfying a strong craving for peanut butter (i.e. eating lots of it!)

Peanuts are rich in the ingredients needed to produce hemoglobin, including:  niacin, folate, pantothenic acid, thiamin, roboflain, choline, Vitamin B6, Iron, magnesium etc…

Of course, staying on high dosage aspirin was not viable. The energy burst faded when I stopped. The MD proceeded with a full coagulation panel done by Dave Berg’s Hemex lab and we started down the anticoagulation path while continuing doing minocycline (an anti-inflammatory antibiotics) to address what was then believed to be the root cause.

Alas…

Heart transplants and regular blood transfusions are unlikely to be accepted as treatment for CFS…..