When Dr. DeMeirleir first sees a person with chronic fatigue syndrome they often have cold hands, cold feet and low blood pressure – even in people who are overweight – which is, as he put it…’highly abnormal’ and their heart rates are increased (10-12 beats a minute faster than in healthy people.).
Welcome to chronic fatigue syndrome, the disorder in which the seemingly paradoxical is commonplace.
Low blood pressure and high heart rates when standing signify a condition called ‘POTS’
Dr. De Meirleir then mentioned postural hypotension (tachycardia) syndrome where blood pressure often drops as one stands (it should increase), while heart rates increase (up to 30 beats more/minute). (Right here, whether you have POT’s or not, you have a capsule of the cardiovascular system problems in this disorder – the heart rate is increased but everything else, stroke volume, contractility, filling – is reduced when the system is put under ‘stress’..)
Nervous System Is One Culprit
He described these problems as being more of a nervous system (autonomic nervous system) than a blood flow problem and noted that when patients get really ‘vagal’ their heart rate and blood pressure can drop low enough so that they lose consciousness.
Getting more to the heart of the matter he identified ‘vaso-active’ (blood vessel effecting) substances such as hydrogen sulfide, nitric oxide and carbon dioxide that cause a permanent increase in the size of the larger blood vessels in ME/CFS patients. As those blood vessels become flaccid the blood pressure drops forcing the small blood vessels tighten up in an attempt to squeeze blood to the organs and muscles.
Dilated blood vessels, low blood pressure, and low blood volume are often found in chronic fatigue syndrome
Using Marian Lemle’s hydrogen sulfide theory Dr. DeMeirlier devised a hydrogen sulfide test he believes is diagnostic for ME/CFS. These and other ‘vaso-active’ substances are being studied in ME/CFS and we should find out a lot more about them in the not too distant future as some big NIH studies (see Biaggioni here) wrap up. )
(As we’ve seen lately blood pressure regulation is off in ME/CFS as well. Studies have shown that the baroreflex response that regulates blood pressure is underperforming as well; all parts of the cardiovascular system do not appear to be responding to ‘stress’ as well as they should. …)
Dr. DeMeirlier believes these enlarged big blood vessels play a key role in producing both the low blood volume, low cardiac filling and low heart pump action. He noted the heart contractions are less forceful because less force is needed to push out the reduced blood that is present. Blood volume can be so low in this disorder that the mitral valve will not close properly.
The enlarged blood vessels, the low blood volume and the low blood pressure all interact to reduce blood flow to the muscles and organs and set up possible metabolic problems in the organs and tissues.
Dr. DeMeirleir on Blood Circulation and Chronic Fatigue Syndrome
Causes
What’s causing these weird imbalances in the cardiovascular systems of people with ME/CFS?
Pathogens – Dr. De Meirleir referred to Dr. Lener’s work suggesting herpesvirus activation played a role reducing heart ‘pump’ activity. While applauding Dr. Lerner’s success in returning the heart to more normal functioning with what Dr. De Meirleir called ‘very aggressive’ antiviral treatment, he called the results ‘preliminary’ until they’d been replicated by someone else.
Inflammation – Of course, there’s inflammation – a problem in many disorders, in particular, cardiovascular disorders – and given all these problems it’s hard not to think of ME/CFS as a cardiovascular disorder. Inflammation is kind of like the elephant in the room for ME/CFS; we know it’s not good but it’s not particularly well defined. What exactly do researchers mean when they say ‘inflammation’ is unclear but it problably involves increased pro-inflammatory cytokine levels, and increased markers of oxidative stress.
(Why the inflammation is present is, of course, the big question. Pathogens, toxin leakage from the gut, a broken antioxidant system, mitochondrial problems, blood flow problems that produce ischemia, etc., could all produce inflammation)
Dr. De Meirleir believes an inflammatory process in ME/CFS releases substances (those vaso-active compounds) that contribute greatly to the cardiovascular problems found. Over time some people develop a sensitivity to the very substance (epinephrine (adrenaline) that closes the blood vessels plus hormonal factors can come into play as well demonstrating that the blood and blood circulation in ME/CFS is a complex subject; one that we’ll certainly be hearing about more in the future.
Maggie’s Panic
Check out Dr. Bell’s story of an ME/CFS patient who’s panic attacks turned out to be a result of her bodies attempt to deal with low blood volume. ’Maggie’ improved tremendously using salt and Florinef and for two days she was back to her old self but then mysteriously relapsed. Increasing blood volume was helpful for her but not the answer. Indeed, a study that used drugs to increase blood volume found they did increase functionality in ME/CFS patients but were not a cure.
New! Enhancing Blood Volume Page
- Check out different ways you can enhance blood volume. Suggestions are welcome!
- Check out more resources on orthostatic intolerance
Yes, yes, and yes. And now what? I want a dx and a drug. I want credibility, validation, legitimacy… and education of the general population of GP’s. I am 62 years old and have grown more and more ill as the decades go by. I will be dead and there will still be no consensus, no validation that I was even ill. AND I SUFFER. Very tired of it.
I am so with you Nina. I live in a state that is know for its schools of higher learning MIT, Harvard and have gone to hear a lecture by a famous Boston doctor who let us know there are over 2,000 peer reviewed studies showing abnormalities in ME/CFS. I have been sick for 15 years and have yet to find a doctor who will even say the letters CFS, it’s getting to the point that I don’t even want to bring up the subject at office visit’s. There is something broken about our medical system when patients don’t feel comfortable having an intelligent conversation with their doctor. If it wasn’t for people like Cort bringing us much needed information I can’t imagine what life would be like for many of us.
If you can help it I wouldn’t mention CFS to doctors at all…I imagine that’s impossible for most people who’ve seen alot of doctors and have that diagnosis stamped on their chart but unless you hit the right person it may hurt.
I’m 78 and have chronic pain from issues in the spine and the extra stress from the undertreated pain is killing me little by little. I was doing a lot better when I had time release pain medication but pain mgt took it away saying it was “bad for me” but didn’t get specific. Any additional stress is a problem which results in being mostly bedbound for a few days. I don’t even care to eat anymore but do enough to get by.
Cort, I wrote yesterday concernig my issues with immune dysfunction, and lack of oxygen available that has nothing to do with deconditioning. I also mentioned white matter in the brain. There is a condition called cadasil or cadisil not sure on spelling. My mother and sister have it and so do I based on the fact that the disease is supposed to carry to 50% of offspring. It is a very rare small blood vessel disease with many different sub sets. I believe there is only one doctor in usa who is doing any kind of research on this disease. He is based out of university of penn. It is definitely worth a follow up. It is definitely a heriditary disease with subsets even within the family that has disease.
Small blood vessel disease – fascinating, Jimmy…I found a link on it – http://en.wikipedia.org/wiki/CADASIL
How did they think to look for it in you? I see that it can cause ‘silent’ or transient strokes.
“with approximately 85% of symptomatic individuals developing transient ischemic attacks or stroke(s).”
I know that there are at least a few of us who present with high blood pressure…not sure where this fits into the puzzle…have all of the other symptoms mentioned…
Yes there are..and I’m not surprised with a wiggy ANS that some people go one way and others the other…I guess it depends on which part is not working.
And all the time I thought my cold hands and feet were due to poor circulation from smoking.
I quit smoking 16 months ago and still have low blood pressure and I’m cold all the time.
I was originally diagnosed with Fibromyalgia but it seems like the Chronic Fatigue symptoms
are more noticeable to me. This is just one more thing that confirms it for me. It’s too bad that
this condition isn’t taken more seriously. So many are suffering.
To me, using terms that basically merely point to a symptomology, terms being used as by the medical community as definitionsss of something they made up arbitrarily because they are too dam dumb to
listen to the patient… is wayyyy past absurd. People who have Parkinson’s are not people who simply have a tremor. Treating a tremor does not cause Parkinson’s to go into remission. It just stops the tremor. The patient stillllll will die of Parkinson’s Disease. I want an etiology and a NAME for what is killing me. My doctor treats me as if I am imagining I am suffering. I hate most doctors now. I hate a system that helps ameliorate the suffering of the rich only.
Hey Cort Doctor Levine did the brain scan bout 5 years ago. Now I never new that my mother had this disease called cadisil at that time. Here is the thing cort. As a child I had cold and viruses that would go on for 2 weeks at a time even while home resting. This continued on and off through my life. At about 22 I lost all my wind capacity out of the blue. Funny I always had issues with lifting weights because my heart rate would rise to fast as apposed to a more gradual increase that jogging or other sports. I always felt heart type issues. I also notice if I walk to much or fast my chest area and stomoch feels cold. like not enough blood is getting there. I have classical m.e -cfs with all the symptoms which by the way caused kidney cancer a year and a half asg. I saw that coming. That was definitely a result of my immune system being over active in some areas and underactive in others. also nk cells 2.0 and out of that they are not even working properly.Heart issues including everything you mention in this article are my major issues along with immune system. Doctors thought I had hiv a couple of times. I really think we will be getting great answers soon. we need one or two big celebritys to help out for finances and just to get the word out. Cort if you know anyone who wants to work with me to do that I think I may be able to be successful in that area. Please let me know. Sorry for grammar ect even without disease not my strong suit. LOL
Jimmy
I obtained my undergraduate degree in biochemistry from
Cornell, graduated from Medical School and was Chief Resident during my Family
Medicine residency. Gurmar extract may help lower blood sugar and protect kidneys.
I was first drawn to my great grandfather who died in a house
fire, I felt I was carrying some part of his experience in me.
Hi everybody, I’m the Mom of a kid who was diagnosed with CFS at age 14, she’s entering her 5th year with this life-stealing illness. She hasn’t been able to go to school, but through sheer force of will she passed her GED got high scores on her ACTs and is starting her freshman year at a nearby university so she can live at home and I can continue to care for her. She has ALL the low blood pressure/volume symptoms described, it’s given me some ideas on things to do to help her. As you all know this illness is a maze that we have to figure out as we go, even with a great doctor. She’s been harassed by schools and others that call her lazy or malingering etc they don’t see a once vibrant healthy child suddenly NEED 20 hours of sleep every day, please keep me/us posted on ANY new info, because just this low blood volume concept has helped so much! Good luck everybody and plz understand there are MANY people that know this disease is real, it is debilitating and just because medical “professionals” don’t have easy answers or tests or treatments doesn’t make it a real and horrible disease. Thnx for letting me vent, take good care of yourselves 🙂
Could the cell danger response be the main culprit for increasing the size of the larger blood vessels?