Well?
Some people feel tired all the time. They suffer from Chronic Fatigue Syndrome. That’s the deal.
CFS is still not well understood, but it is apparantly caused by a fairly common retrovirus which attacks the immune system. The virus shuts down the natural killer T cells in the immune system, but leaves the rest intact, so the person suffers from constant low-grade fevers and infections but doesn’t die. The virus also apparantly interferes with aerobic cellular respiration, forcing your cells to rely more on anerobic energy sources, which makes you tired most of the time. People with CFS are also more likely to get cancer, apparantly due to their weakened immune system.
The virus which (probably) causes CFS is present in a large portion of the population, but only rarely causes illness. Why this is and what triggers it is not know. Medical science only officially recognized CFS as a disease recently, so there’s still a lot more research to be done before it’s fully understood.
There is no cure. There are drugs and treatments which you can take to improve your energy level and reduce the pain, but they do nothing to fight the underlying retrovitus infection. The best you can do is spend several years resting and avoiding stress while your body fights it off by itself. If you recognize the illness and start resting immediatly, this takes about three years. If you keep working and stressing yourself out and don’t rest enough in the early stages, you might never recover.
My wife has had CFS for about two and a half years now. She’s mostly recovered now, but there was a period of about six months when she basically couldn’t get out of bed. Even though she’s nearly back to normal, we still have to be careful because she gets sick easily, and if the retrovirus theory is correct it means she’ll never really be free of it and could relapse at any time.
look up Epstein Barr Virus.
jb
Ok thanks. I understand that there are those who contend that CFS is “in the head,” so to speak. I take it that this view is disfavored?
Is the retrovirus present in larger quantities in those who have CFS?
It seems like the virus which (allegedly?) causes CFS is extremely widespread.
I assume it’s not easy to diagnose except through the symptoms?
Blood tests any good?
Be careful, though. CFS is a magnet for quacks. If you feel tired for more than six months and they can’t find any cause for it, you get a diagnosis of CFS. Since the symptoms can also be caused by mental depression, you can see why the diagnosis would be controversial.
Fortuneatly, this view is less common now than it used to be, althouth there still are some doctors who hold this view. CFS is most definetly not a psychosomatic disease as there are detectable changes in the blood and immune system in those who have it.
I believe so, although I’ll check with my wife when I get home tonight. Actually, I’ll see if I can get her to come on here and answer questions herself; she knows a lot more about the disease than I do.
One problem is that CFS, similar to fibromyalgia and depression, is too often used to readily and widely as a “trashcan diagnosis” which - IMO&E does a disfavor for the much smaller number of folk who actually experience such somewhat nebulous conditions.
Can you elaborate on what the detectable changes in the blood and immune systems are? It seems like if that were true, there would be a different diagnosis process. The CDC’s process for a CFS diagnosis is to see if it lasts for six months or more, then try to rule everything else out, and if that doesn’t work, call it “CFS.”
In my wife’s case, the diagnosis was based on a zero count for natural killer cells in the blood (but an otherwise normal immune system), and a positive test for the epstein-barr virus, combined with extreme fatigue and fevers for over 6 months, plus the fact that she didn’t test positive for any other disease such as lupus, lyme, AIDS, or fibromyalgia that can cause similar symptoms. Yeah, it’s a poorly-understood disease and the diagnosis is somewhat grab-bag, but there is a real physical illness going on. It also helped that my wife had suffered clinical depression in the past, and when she started suffering from CFS she knew pretty quickly that it wasn’t depression but something different with a real physical cause.
The Epstein-Barr virus is present in a large number of people, many of whom suffer no ill effect whatsoever from it, so it seems that something additional is needed to cause CFS.
AndrewL’s comments pertain to his wife and possibly a subset of CFS patients, not to CFS patients as defined by epidemiologists and physicians. For example, “…it is apparantly caused by a fairly common retrovirus which attacks the immune system.” Here is what the CDC says" “Taken together, these studies suggest that among identified human pathogens, there appears to be no causal relationship for CFS. However, the possibility remains that CFS may have multiple causes leading to a common endpoint, in which case some viruses or other infectious agents might have a contributory role for a subset of CFS cases.” Also, “The virus shuts down the natural killer T cells in the immune system, but leaves the rest intact, so the person suffers from constant low-grade fevers and infections but doesn’t die” doesn’t jibe with what the CDC says about CFS: “Several investigators have reported lower numbers of natural killer cells or decreased natural killer cell activity among CFS patients compared with healthy controls, but others have found no differences between patients and controls.” And AndrewL’s assertion that “People with CFS are also more likely to get cancer, apparantly due to their weakened immune system” is at odds with the CDC’s statement that “The opportunistic infections or increased risk for cancer observed in persons with immunodeficiency diseases or in immunosuppressed individuals is also not observed in CFS.”
CDC quotes are from http://www.cdc.gov/ncidod/diseases/cfs/causes.htm#Agents
Hi. I’m Andrew’s wife. Anyhow, yeah, there’s a plethora of conflicting info from the government, the medical industry, and a zillion “homeopathic” remedies. I was lucky, in many respects. I was a wedding videographer, and one of my brides happened to be an RN and told me what to get tested for. I had also had depression for 2 decades, and under control, and knew what it felt like. Fevers, extreme flu-muscle pain, sore throats isn’t it.
It starts like flu, but seems to not go away, and then it gets worse. Some people who had mono said it sounded like mono. Where even tying your shoelaces tires you out and you have to lay down. I had my hair cut very short, so I could take care of it. I bought clogs. It hit the hardest in the first year, where Andrew had to feed me by hand because I was too weak. (That’s when I knew I should marry him. Takes a special guy to do that 
).
I first went to my allergist, Hemant Kesarwala, who’s excellent. He’s outside my insurance, but I go to him and just pay the extra. He had a friend who specializes in these diseases, and I went to the specialist. He and my Provider (HMO doctor) worked in concert, and I must have given a gallon of blood to be tested.
Epstein-Barr: Yes
Lyme, Lupus, Fibromyalgia, Cancer(s), AIDS: No
My Natural Killer Cells were not there, but the good news was that other parts of my immune system were still strong. That’s why I get the fevers and stuff. My body fights things.
Totally independent of anything CDC or the medical people say, here is what I realized, based on -my- experience:
-
Something happens that makes the body stop using oxygen. I used to work out a lot, so I know the difference of how anaerobic and aerobic exercise feels. Everything I did felt like I was weightlifting. I’d get those tight muscle feelings. Also, I expected to atrophy, after a year in bed. My muscles are still pretty strong.
-
It’s tied to allergies, somehow. I had awful allergies, but they seemed to disappear when I got CFIDS. Now that I’m becoming more functional, I seem to be getting them back.
-
It’s not in the head. I have an immense amount of tools to deal with psychological disorders, and nothing works. I did use those to fight against becoming depressed over not being able to do anything, though.
-
Something takes away your immune system. I get sick from people very easily, now. I carry hand wipes with me at all times, and vitamin C/zinc drops to take.
-
Stress is very bad for it. May even precipitate getting it. If I get stressed out, I get bronchitis for 2 weeks, now. Right before I got CFS, the following had happened: My first husband and I decided to divorce and did so (takes a year for the whole thing), my 19-year old dog had to be put to sleep, I had to buy a condo to live in, my workload increased by 65 percent, and my best friend since childhood and her 8-yr-old son were killed in an auto accident. I spent the year after that, working hard and being single for the first time in 10 years. When I had a chance to rest, that’s when I got whammied with CFS.
I don’t know if they’ll figure it out, or cure it, or what. I just make do with what I have, and I’m thankful it’s not something like cancer, where I’d need painful treatments.
I think part of the confusion here is that since CFS is a process-of-elimination diagnosis, it’s likely that there are many different conditions with entierly different causes that will get you a CFS diagnosis. So take what myself and Ellis have said and apply that to a certain subset of people with a (possibly retroviral) illnes which causes CFS. Other people diagnosed with CFS may have something totally unrelated causing it.
Thank you so much for sharing your personal experiences. I wish you good health.
As many have said, one of the biggest problems with CFS/fibro/other related (in symptoms at least) illnesses is that it’s not normally the first thing doctors look for. They usually arrive at the diagnosis after eliminating other possibilities. In the area I’m at now, if someone walked into the doctor’s complaining of low-grade flu like symptoms that aren’t going away, it’s more likely they’d be tested for West Nile Virus before the question of CFS ever enters the picture.
Another problem is that there is still a tendency towards the attitude that “it’s all in your head”, although that is slowly changing as education efforts ripple through. Many with CFS, et. al., look normal, even if they feel like the poor SDMB hamster at the end of the day. 
It’s not like chicken pox, or a sprained ankle: people can see those things, most people have experienced those things and can relate. But to being tired? People can relate to being tired, but normally being tired is a short term deal for most people. They feel tired, they sleep, they get over it. It can be hard to connect being tired with having a medical problem: not only for the people around you, but for the person in question, no matter what the reason behind the fatigue is. (Which can lead to a bunch of other problems, but that I think is best saved for another time.)
<< This post made from 100% recycled electrons. >>
"Another problem is that there is still a tendency towards the attitude that “it’s all in your head”, although that is slowly changing as education efforts ripple through. "
How can you say that it’s not “all in your head” if you have no idea where or what IT is? The only way you can conclude, for any given individual, that it is not “all in their head” is if you have some objective evidence of an abnormality elsewhere. For many CFS sufferers, who have no evidence of abnormality elsewhere, you can’t say that it ISN’T in their head any more than you can say that it IS in their head.
(Of course, you can solve the problem by defining CFS as a condition that is not “all in the head” but that’s just playing with words.)
(What’s wrong with a condition being “all in one’s head” anyway? Are people who have problems that are “all in their head” any less disabled or less deserving of care than people with problems elsewhere?)
>(What’s wrong with a condition being “all in one’s head” >anyway? Are people who have problems that are >“all in their >head” any less disabled or less deserving of care than people >with problems elsewhere?)
The problem with saying that it’s psychosomatic is that then it will be treated that way. I got the flu sophmore year of high school, and it never went away, it turned into cfs and fibromyalgia. My first doctor kept plagued me with stupid questions, “Is this a particularly stressful semester at school?” “Are you having any trouble with your boyfriend or other friends?” “Is everything really ok at home?” I was in extreme pain (fibromyalgia feels like there’s acid trying to burn its way out of you at various pressure points) and that idiot was trying to pin it all typical teen problems. Then came the crowning question, the dumbest thing I’ve ever heard, “I see that you were born by cesarean , perhaps this is a type of delayed birth trauma or a bonding problem?”
Luckily, that last question made my mom snap, and she found an infectious disease specialist who diagnosed me very quickly. Unless it happens to you, you can’t imagine how frustrating it is to be in pain and have to fight with the doctor you’re supposed to be able to trust to make it all better. Imagine having a broken leg, and dealing with a doctor who is arrogantly certain that a cast should be put on your arm instead of your leg.
Tho I am far from an expert, it seems to me that the medical community has long had difficulty addressing these somewhat nebulous conditions. Maybe 200 years ago the people diagnosed with CFS today may have been diagnosed with hysteria.
Other diagnoses, such as depression, fibromyalgia, fibrositis, myofascitis, environmental sensitivity syndrome, somatoform disorder, etc, grow and recede in popularity. My suspicion is that the particular diagnoses in vogue at a particular time says something about the relative prominence of various portions of the medical community, as well as contemporaneous societal trends towards attributing things to physiological as opposed to mental/emotional causes.
Please note that none of the above is intended to suggest that I consider any of the conditions I name to be unreal or insignificant.
It is really upsetting to most people suffering from physical ailments to be asked about psychological stresses, but they should ask it, and I don’t fault my General Practitioner for asking me stuff. She did that plus many blood tests, to rule out physical stuff, as well.
Fibromyalgia has that ‘poke the person in 11 places and see if it hurts’ diagnosis. Since I have a red rash across my nose, they thought about Lupus (there’s a specific rash that goes with it). So, in certain ways, CFS gets that “Well, we eliminated all the other stuff” diagnosis.
A lot of trouble comes when the doctor simply dismisses things, instead of being thorough. Like “I feel tired all the time” …“You’re depressed. Here, have a prescription for MAO inhibitors.” Even when the specialist told me, apologetically, that aside from telling me to rest and not get stressed out, he can’t do anything other than give me prescriptions for stimulants and painkillers. I’m not a big fan of drugs, so I just drink coffee/tea and take Advil for the pain.
Also, I try to keep ‘perspective’. In the newspaper, a couple years ago, they had a story about a woman who was healthy and pregnant, but something happened to her one day, and they had to totally amputate her arms and legs. Her nervous system was damaged and she can no longer speak. She lost the babies. However, once all that was over, she was back to regular “health” and will live out a full human lifetime, although her quality of living is certainly horrible. I keep the newspaper clipping on the wall near my bed. Whenever I start to despair, I look at it, and know that she’d trade places with me in a split second. And I realize that, yeah, I got a lousy hand these past few years, but there’s lousier hands to get.
And I sum it up with: Enjoy life, no matter what’s wrong with it.