AboutSuzan Jackson Expertise I have had CFS since March 2002. My 14-year old son and 10-year old son also has CFS. I have a scientific background (chemical engineering) and have read and researched extensively to try to help myself and my sons to improve our symptoms, with some success. I`ve also conferred with some of the top CFS doctors in the U.S. I have a lot of hard-won experience working with school systems to get appropriate support for my sons. This is a very debilitating and isolating illness, and I would be glad to help anyone else who is struggling with CFS themselves or with a family member. You can read about our experiences in learning to live with CFS at my blog: www.livewithcfs.blogspot.com.
Experience Have had CFS/CFIDS since 2002.
Two young sons have CFS/CFIDS.
Organizations CFIDS Association of America
Various listserves that provide up-to-date information on CFS research.
Question i have suffered with ME since i was 14. Im now 28 but over the past 18mths i have been vomiting and passing out. i have seen several specialists for heart and head everthing has come back fine thankgoodness but im not getting better its as if they think its all in the mind even though i have been rushed into hospital on several occasions after blacking out and then covered in vomit(i am so ashamed)its only just occurred to me could it be linked with ME.Have you seen or heard any cases with these symptons relating to ME? Thankyou for reading my letter my name is clare from England Manchester.
Answer Dear Clare -
I'm so sorry that you're going through such a difficult time. This disease can do crazy things to us. I hope I might be able to help you, but first, please know that you are not alone and you have nothing to be ashamed of. My favorite CFS reference book says that 30-50% of people with CFS/ME experience vomiting and 50-80% faint.
Fainting is so common in CFS because of a condition known as Orthostatic Intolerance (OI) that affects 90% (maybe more) of people with CFS. Researchers have found that CFS causes low blood volume and, therefore, low blood flow through the heart and reduced blood flow to the brain. Orthostatic Intolerance means that when we stand or even sit up for extended periods of time, the blood doesn't flow properly to our brains and hearts, causing all sorts of symptoms. My son and I have a moderate form of OI - neither of us has ever fainted, but standing or sitting up for awhile can make all of our CFS symptoms worse or even trigger a bad crash. Other people (like you) faint because of the poor blood circulation to your brain.
The hospital and doctors have likely not discovered this condition because it is unique to CFS and fibromyalgia. OI does not show up on the standard blood pressure tests usually done. There's a general medical condition known as orthostatic hypotension, but OI associated with CFS is different. The best way to diagnose OI is to use a tilt table test or a standing version of the same test. In either case, doctors monitor your blood pressure and pulse rate for an extended period of being upright.
The good news is that there are ways to treat OI (a nice change from most aspects of CFS!). First and most simply, you can be aware of the problem and avoid standing still or sitting upright for long periods. If you have to stand for awhile, keep your legs moving as much as possible to keep the blood flowing. When you sit, elevate your legs to prevent the blood from pooling in your lower extremities. Most important, vastly increase the amount of salt and fluids you drink/eat. Salt helps your body to hold onto more fluids, thereby increasing blood volume. My son drinks Gatorade every day to help his OI; I drink several glasses of V-8 juice each day (do you have V-8 in the UK? It's a vegetable juice very high in both sodium and potassium).
The world's foremost expert on OI in CFS is Dr. Peter Rowe at Johns Hopkins University Hospital (not too far from where I live). He's the one who first identified the condition in his young CFS patients and who pioneered OI treatment with various medications to help increase blood volume. I've consulted with him several times about my son. As with many children, my son has benefited tremendously from OI treatment with Florinef, a medication that helps your body hold onto more salt and fluids. The change has been astounding. He's now at about 90% of his stamina and activity level as before he got CFS. Florinef didn't work as well with me (I suspect because the dose wasn't high enough, since we saw no change at lower doses with my son), but I have benefited from the extra salt and fluids and am currently trying licorice root, an herb that has some of the same properties as Florinef.
Here is an excellent overview by Dr. Rowe on OI, including how to diagnose and treat it. I suggest you read it thoroughly and share it with your doctor or a cardiologist who can diagnose you and help you try various treatments:
Usually, once you understand OI and find some treatments that help, you'll see improvements in almost all of your CFS/ME symptoms. I don't know, but I suspect the vomiting is linked to OI as well.
One other, related thing you might want to read about is the overall effects of CFS on the heart. Several doctors now theorize that CFS and low blood flow cause cardiac problems. Here is information from the two primary doctors studying this area (Dr, Myhill is in the UK and Dr. Cheney is in the US):
You may want to also share this information with a cardiologist.
One other resource that I've found very helpful is the book I referred to at the beginning of this very long note! Katrina Berne's book "Chronic Fatigue Syndrome and Other Invisible Illnesses" is an excellent overall resource for dealing with every aspect of CFS/ME: emotional, social, and physical. It's a few years old now, so it doesn't include the very latest research, but it's still very thorough and helpful (the author has CFS herself and did extensive reserach for the book). If you're interested, you can check it out from amazon:
