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Why ME/CFS may kill you: Disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS – Source: Neuro Endocrinology Letters, Dec 30, 2009

  [ 81 votes ]   [ 20 Comments ]
By Michael Maes, FN Twisk • • January 13, 2010

There is evidence that disorders in inflammatory and oxidative and nitrosative (IO&NS) pathways and a lowered antioxidant status are important pathophysiological mechanisms underpinning myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS).

Important precipitating and perpetuating factors for ME/CFS are (amongst others):

• Bacterial and viral infections;

• Bacterial translocation due to an increased gut permeability;

• And psychological stress.

Recently, Jason, et al. (2006) reported that the mean age of patients with myalgic encephalomyelitis / chronic fatigue syndrome dying from heart failure, i.e., 58.7 years, is significantly lower than the age of those dying from heart failure in the general US population, i.e., 83.1 years.*

These findings implicate that ME/CFS is a risk factor to cardiovascular disorder. This review demonstrates that disorders in various IO&NS pathways provide explanations for the earlier mortality due to cardiovascular disorders in ME/CFS.

These pathways are:

a) Chronic low grade inflammation with extended production of nuclear factor kappa B and COX-2 and increased levels of tumor necrosis factor alpha;

b) Increased O&NS with increased peroxide levels, and phospholipid oxidation including oxidative damage to phosphatidylinositol;

c) Decreased levels of specific antioxidants - that is, coenzyme Q10, zinc, and dehydroepiandrosterone-sulphate (DHEAS); **

d) Bacterial translocation as a result of leaky gut;

e) Decreased omega-3 polyunsatutared fatty acids (PUFAs), and increased omega-6 PUFA and saturated fatty acid levels; and

f) The presence of viral and bacterial infections and psychological stressors.

The mechanisms whereby each of these factors may contribute towards cardiovascular disorder in ME/CFS are discussed.

ME/CFS is a multisystemic metabolic-inflammatory disorder. The aberrations in IO&NS pathways may increase the risk for cardiovascular disorders.

Source: Neuro Endocrinology Letters, Dec 30, 2009;30(6). PMID: 20038921, by Maes M, Twisk FN. Maes Clinics, Antwerp, Belgium. [E-mail:]

* "Causes of death among patient with Chronic Fatigue Syndrome," Health Care for Women International, Aug 2006, by Jason, et al.

** See also the authors’ paper, published as a companion to this one in Neuro Endocrinology Letters, “Coenzyme Q10 deficiency in ME/CFS is related to fatigue, autonomic and neurocognitive symptoms…”

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this article
Posted by: Jana5
Jan 20, 2010
I find this article depressing and scary. To someone so ill like myself reading this makes me feel more hopeless. While articles such as these may be informative they should never be written without some hopeful, positive information included as well.
Reply Reply

Way to depressing why dont we got out and shoot ourselves?
Posted by: hensue
Jan 20, 2010
I cannot handle this we have enough to handle my doc will not run any heart test on me. God all this good news will kill us!
Reply Reply

This Article
Posted by: lmartell
Jan 20, 2010
As depressing as this information is, I also see that it contains concrete information about what we need to consider to stay ahead of the illness, for example, checking the heart, checking our medicines and supplements, etc. Plus - if the Centers for Disease Control (CDC) actually starts looking at this illness as a potential killer, then maybe they will actually put more effort into finding the actual cause and thus a cure!!!
Reply Reply

Posted by: health61
Jan 20, 2010
I agree with Imartell's comments. Yes it is scary to hear this but if we want better ways of taking care of it, then we need to hear it. This very much confirms to me that my team of doctors are excellent and I have chosen the right types for my care. The regimen they have me on is working very well, but you need to have a positive attitude. Both my parents had heart problems, my mother had fibromyalgia-colon cancer-3heart attacks. My father had quadruple by-pass surgery and ended up on kidney dialysis. I'm also diabetic so I am thrilled with any new info that will help my doctors keep me in good shape.
Reply Reply

there's hope for all of us
Posted by: weary1
Jan 20, 2010
I agree that we need more positive articles on our condition. We are already painfully aware of the problems this disorder brings. You know what, H2O may kill you too, in right quantities :) If you eat right and try to stay physically fit, your chances for a longer life are just as great as those without ME/CFS. But, then, again... do I really want to live till my 90s in pain? Cheer up, brothers and sisters! One thing we all can do for sure is to be positive and keep fighting!
Reply Reply

scary but very helpful
Posted by: Sandy10m
Jan 20, 2010
Yes, the comments can be scary, but they also confirm that I am doing the right things with my supplements. I am taking loads of antioxidants (alpha lipoic acid, Vitamin C, grapeseed extract, Vitamin E, Omega 3 fish oil) along with zinc (in liquid ionic form for maximum absorption) and CoQ10 (as ubiquinol instead of ubiquinone, so that it is already in the bioavailable form). Add to that a high dose of all the B vitamins and more, and I feel like I'm doing all the right things to keep myself going, until the researchers find the real cause for ME/CFS and then the cure. If you're not on all these supplements yourself, then you're at risk for the scary things from this article. If you're limited on money, then the most important stuff to take would be Ubinquinol, Omega 3 fish oil (3000 mg daily), liquid ionic zinc, and Super-B's.
Reply Reply

article does not give solutions
Posted by: ArielGail
Jan 20, 2010
I agree that this article is off-base. there are so many preventative and turn-around strategies we can choose, using food as medicine, using alternative approaches, herbs, and lifestyle changes that make so much profound difference -- much more than the allopathic, pharmaceutical approach, that I wonder who is writing this stuff? someone from a drug company no doubt. don't let stuff like this distract you from the path of self-healing. We all have a program, our own self-designed program, which will work, is within reach even for low-budget people, and without the help of doctors. I am an example of somoene who against all the odds, and with all the disadvantages economically that one could have, and with complicating other burdens to carry, and I am still alive and better than I was before I chose self-healing approaches. Educate yourself! Become a scientist and develop you own solutions and medicines. Stop listening to the drug pushers and get on board with your natural body.
Reply Reply

GET A GRIP: Knowledge is POWER
Posted by: nitekitty
Jan 20, 2010
You guys need to get a grip. It's fantastic to have news come out about this sort of thing. It's yet another valid argument for ME/CFS treatment, for our doctors to take us seriously, and this article lists particular things that can be tested and assessed in order to reduce risk of cardiovascular problems in the future. You can take this list of things to be tested over to your doctor and say, "Hey, I'd like to reduce my risk of cardiovascular problems. Let's test these." If something is abnormal you can target it. But if you wallow in misery about oh there's already so much to worry about, well, then you'll die wallowing in misery. Knowledge is POWER folks.
Reply Reply

Thank you for this article
Posted by: rosebud29
Jan 20, 2010
When I was first very sick with ME/CFS, chemical sensitivity etc I couldn't read anything negative as it stressed me more than I could cope with. However many years down the track I can read a few more things without freaking out. In fact having lost so many friends and so much credibility with this illness it actually good to have some medical evidence that says "This IS a nasty thing and yes it has been jolly hard." Thank you for the validation. I knew there were times when I was so close to not being here, it made it really hard to have the illness trivialized. But to give you hope, I was in bed 24/7 for a total of 9 years, couldn't sleep, eat, open my eyes, turn over etc, noise, light, sound sensitive ++++ and could never have even got on line to find this information. Now I can go shopping more, I'm out of the wheelchair etc and walking, so remember you may not always be as sick as you are today, just don't give up :)xxxx
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As Rosebud Points out, We are in Different Stages and Need to be Gentle with Eachother
Posted by: ASIMSNAP
Jan 20, 2010
Well said Rosebud. I, too used to be as ill as you have described. I remember all too well that with the tiniest bit of stress I could not cope. "You People Need to Get a Grip" is neither helpful or supportive. When you are extremely ill it is even difficult to read so the last thing you need is a scary article without clear information on how to handle the subject. I was once far to ill to research. Like Rosebud I couldn't even get on the internet. If we can't find solace and understanding in our own community then we will find it from no one! So PLEASE respect everyone and remember they may not be as well as you. To be told this could cut our life span to 58? is a scary thing! As this article says we can't handle stress and this is stressful. So thank all of you who gave constructive ways to combat this study...the article certainly doesn't! Be Gentle with Yourselves and...Eachother!!!
Reply Reply

Better Understanding Needed
Posted by: hipmama42
Jan 20, 2010
Well,I am one of those *lucky* souls who was diagnosed with idiopathic cardiomyopathy and congestive heart failure last August, thought to be "perhaps the result of a virus but we really can't say for sure." I have had fibro for over 10 years, and just recently the fibromyalgia expert Dr. Mark Pelligrino confirmed my diagnosis, as I had all 18 tender points and then some - as well as the fibro fog and extreme fatigue. I had also been previously diagnosed and treated for chronic fatigue syndrome beginning about 4 years ago, by my family doctor. My CFS and FMS symptoms kept getting progressively worse, and the fatigue was becoming so overwhelming on a consistent basis that many days were spent mostly in bed. My blood pressure and heart rate were what my doc considered "borderline high" and decided that we would not treat it with meds just yet as I was already taking so many for my other conditions! My ankles began to swell periodically over the last year, and I became even more lethargic and sluggish, continuously sick with sinus infections, bronchitis, and flu....all signs of chronic viral infection with bacterial infection superimposed. I am also asthmatic. Bottom line, I was rushed to the ER by ambulance last August with severe bronchitis and out of control coughing. I was coughing up more phlegm than I had ever seen in my life and my nebulizer was not helping it. The ER doc ordered a chest X-ray, and then told me that I was in serious congestive heart failure, with fluid backed up into my lungs, and some life-threatening cardiac arrthymias as well. He ordered me to be admitted to the hospital for tests, and it turns out that my heart is damaged considerably. I am now on 5 CHF meds and doing better than I was last summer, although still not great. I have broached the subject a number of times to my cardiologist and other cardiologists that I saw in the hospital as well as my PCP about the possibility of the heart failure and "viral heart disease" being a part of the CFS process - whatever viruses and bacteria were in my system already that my poor immune system could not clear, as well as my altered metabolic pathways and digestive abnormalities - were likely manifested in part as heart disease, and that the process had probably been going on for some time, just not picked up or suspected by my primary or myself. As word of caution to you all - and please, let me emphasize that I feel tremendously blessed to have had my heart condition caught when it was, because so many CHF diagnosis are missed by doctors - the symptoms of heart failure - dizziness, shortness of breath, extreme fatigue, light-headedness, mental fog - greatly resemble the typical CFS symptoms, which is why they did not raise a red flag earlier. We need to be our own advocates - if you have not had an EKG for quite awhile, then ask for one. If you experience swelling of the ankles, feet, legs and hands that lasts for more than a day, accompanied by water weight gain of more than 2 pounds, if your blood pressure or pulse has been running on the high side, if walking and going up steps leaves you especially fatigued all of a sudden, or you feel a tightness in your chest or actualy pain, skipped heart beats, or anything at all abnormal in the area of your chest, upper back, shoulder areas, please don't ignore these symtpoms, even if your doctors downplay them! It is possible to be going into heart failure for a very long time without noticing or feeling a thing. This is especially true for those of us with CFS and FMS who already suffer from chronic fatigue. Yes, this article is depressing, but it is a serious subject and I can personally attest to its validity. I only wish I had been better informed about the link between CFS and heart failure earlier, so that I would have pushed for more heart testing and maybe it would have been caught before so much damage was done. I am angry at this disease and what it has done to me. It is a lot to accept, and then to add heart failure on top of it....sigh. I believe that I would feel more hopeful and optimistic if cardiologists and rheumy's and PCP's were all on the same page, so that they could see how everythng is interrelated here, and not the result of separate disease processes. I am glad that now research is being done and some scientists and doctors are beginning to connect the dots. In addition to my heart meds, I take CoEnzyme Q-10 a fish oil supplement, B's, extra C for immunity, and a good multivitamin. I believe that knowledge is power. There may be doctors who don't like people like me, the so-called "medical Googlers" as patients, but with a subject so little understood as CFS, we really do have to look out for our health and well-being! For us, it's a matter of life and death....
Reply Reply

to HipMama42--Yes you sure are!!!
Posted by: SantaFePrax
Jan 20, 2010
Hullo, This information is pivotal--even though I have some medical background and have worked with brilliant docs who specialize in autoimmune disorders, I had never seen exactly this info put together so succinctly.

I especially liked the very detailed response from HipMama42, and the fact that she included options and ways to handle this problem.

It is interesting that the article did not include such info, but that's research--the way it was presented in the brief provided a great jumping off point.

I have had heart pains, left arm pains, and other symptoms for years and have just given up trying to get docs to address this. Now my insurance would not cover an EKG, so....maybe I should get this out of my savings!

Thanks to the researchers and this institute. Felicia Trujillo, ND, GCFP


The message and the messenger
Posted by: franktwisk
Jan 21, 2010
Please, don't shoot the messenger. The most important is to look at the message, which is depressing, but can not come as a complete surprise, since our illness is very serious. Frank
Reply Reply

Posted by: elainep
Jan 21, 2010
I agree this news is scary. However, the good news is I'm taking most of the things they recommend! If you are short on money, check out They have very good supplements at very reasonable prices! I've even heard that Consumer Digest recommends them.
Reply Reply

Heart Failure
Posted by:
Jan 22, 2010
This information is wonderful to have as both a validation to the complex disorder that had been and in perventative medicine. I went into cardiovascular collapse at age 43 after a couple years of fatigue and pain and decline in general health- Could no longer work more than a few days a week.I was thought to have MS but not even many evaluations at UCLA did any good. I collapsed after sereral months of feeling faint.I begged for tilt table test that took months to get. The same day I had a positive tilt table they scheduled a pacemaker. That kinda helped but my blood pressure remained to low. I ended up on three blood pressure raising meds and still felt sick. I did not start to get well until I went to a chronic fatigue specialist who diagnosed 5 chronic infections including EBV, HHV-6, CMV, Mycoplasma, and candida. I am still on 2 antibiotics,one antifungal, cortisol, and prn blood pressure support almost three years later. We did effectively kill the EBV virus. The difference is I can ride a bike 10 miles, take care of my home, go to meditation class twice a week, and hope to rehabilitate enought to work part time by the end of the year. I am off percocet most days. I was headed for death from medical neglect in the care of 5 physicians who did not reconize CFS as fatal or treatable. I am down to one CFS specialist I see every other month and a cardiologist I see yearly. The CFS doctor understands every system so I dont need 5 doctors. One good one is enough. I plan to show my cardiologist your artical who never beleived in CFS in the first place.--Happy Heart
Reply Reply

Getting better by treating infections
Posted by: jewelbug
Feb 19, 2017
Curious if you could share the doctor treating you so well.


This article may not be meant for us.
Posted by: shut-in
Jan 23, 2010
I felt exactly the way some of you describe after reading this article. I was angry and depressed. Then it occurred to me that this article and that debacle of a streaming video on XMRV yesterday weren't meant to frighten us...they were meant to get the attention of the scientific, medical and government entities in order to get more funding. Yesterday's broadcast was nothing more than a bunch of scientists slapping one another on the back. There was nothing there to help us; as there is nothing in this article to help us. In fact, I would go out on a limb and say that some of these claims could be grossly exaggerated. Unfortunately, the medical community doesn't get their information from ProHealth, so the point of getting their attention is moot. The only reaction they'll receive, public, medical or otherwise is the stress it causes for the subjects. Thanks for that.
Reply Reply

Are you kidding me?!?! MICHAEL MAES NEEDS TO BE FIRED!
Posted by: Meeshelle
Jan 24, 2010
Is this article a joke? What a cold and miserable article for a fragile girl like me to be reading! I am 31 years old and have been diagnosed with a trifecta of Psoriatic Arthritis, CFS and Fibromyalgia for 10 years. Because of that lies MAJOR depression among other things... After reading that one sentence, that my life expectancy might be 58 years, i could not even finish the article because i started to cry and have a MASSIVE PANIC ATTACK! Knowledge is power but i think someone could have spelled this one out a little better. THANKS MICHAEL MAES for making an unstable girl reflect upon her demise at the age of 58. JERK.
Reply Reply

The key word in the title of this article is "MAY", not "WILL"
Posted by: MsChris
Apr 8, 2010
I contracted CFIDS over 20 years ago, later developed Fibromyalgia and Sjogren's syndrome (an autoimmune disorder). I have dealt with a lot of inflammation confirmed with consistently high SED rates. I recently discovered I also have hypoadrenalism (do to many prior stresses) and low thyroid. With this history, I would think I'd also be susceptible to an earlier demise. However, because of recurring pain in my chest, I recently had several EKG's, a couple chest X-rays, a CT scan and a nuclear stress test to determine the state of my heart and circulatory system. Part of this testing was done in the emergency room where I was constantly monitored for the entire day. The results - no aneurysms, blockages, malfunctions found and did surprisingly well on the stress test! Was given a clean bill of heart health from the heart specialist and given the OK to tackle ANY exercise I care to tackle (which surprised me considering I am more sedentary than not!). All this at 58 years of age. Since I had been on the road to improving my health anyway, I found that further positive changes in my diet since have helped reduce the inflammation in addition to the bonus of some weight loss (fat is also know to hold onto toxins and affects hormones resulting in increased inflammation). I had already been taking a battery of anti-oxidants include fish oil, Co-Q10 and added a liquid vitamin supplement to ensure I'm covering all the bases and now take thyroid and adrenal supplements and additional Vitamin D3. Am feeling much better - less inflammation, fibro is less intense but still have bouts of fatigue. My advise is not to stress yourself on what "MAY" happen and concentrate on whatever you can do to "balance" your health now with the proper diet and supplements. Also mentally focus on being as well as you can helps reduce unnecessary stress. There's a lot to be said for positive thinking! I say "Improved Health" to all! PS - turns out the chest pain was due to back misalignment which disappeared after a series of chiropractic adjustments!
Reply Reply

Posted by: vam
Sep 28, 2011
In your article you stated that the mean age of patients with myalgic encephalomyelitis / chronic fatigue syndrome dying from heart failure, i.e., is 58.7 years. Is this due to the disorders in IO&NS; pathways? Who provided you with this information? Was this study done by CFS specialists? Is there a better way to make sure that a patient with myalgic encephalomyelitis can live a longer life? I would also love to hear the positive stories of patients with chronic fatigue syndrome who have not died from heart failure and have lived very long lives.
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