The Disease We Barely Know Anything About

We don’t know what causes Chronic Fatigue Syndrome, how to treat it or even what to call it. What’s up with this mysterious disease?

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You’ve had the flu before, right? Well, now imagine feeling worse than that all the time. I’m talking about “Chronic Fatigue Syndrome,” hereafter referred to as CFS for the sake of my brain not exploding all over the camera lens.

Maybe you’ve heard of this disease and thought, “Huh, I’ve been a little tired lately. Maybe I’ve got it?” Well hold on there boss, because to be properly diagnosed with CFS you have to be sick for at least 6 months straight. CFS is so debilitating that bed rest doesn’t even make it better.

It’s not even worth the Netflix binging, people.

And here’s the kicker: we barely know anything about how to diagnose it, what causes it or how to treat it. Some people don’t even think it’s a real biological disorder. Skeptics called it the “yuppie flu” or “shirker syndrome” for awhile. And for years doctors thought it was psychosomatic.

Less than half of today’s medical textbooks have any information about CFS as well. And only one-third of medical schools even teach it in their curriculum.

One thing we sort of know about CFS are its symptoms. Obviously, because of the name, “fatigue” is a big one. But that word barely does it justice, because patients are so weak it interferes with their daily activities, as well as their concentration and stamina, causing at least 50% incapacitation.

In addition you’ve got to have 4 or more of the following major symptoms over here. I’m not going to say them all out loud, or else we’d be here for a week, so just hit pause and check them out.

Now these are all the possible minor symptoms that could coincide with what we’ve already covered. As you can see, they’re both physical and psychological.

So you get an idea of how difficult it is to diagnose this thing. It gets even more complicated because CFS affects its victims in cycles. They’ll have periods of illness, followed by feeling okay, with sometimes even a total remission of their symptoms.

“Jeez Cristen, that sounds terrible,” you’re probably saying to yourself, “What causes this awful disease?” Well… I don’t know. Scientists haven’t identified what causes CFS. And they’ve studied all sorts of things as triggers: viral infections like Mono, immune system disorders, allergic sensitivity, stress and even nutrition.

One thing we do know is there’s no evidence that CFS is contagious. But it affects way more women than it does men. Current estimates by the Institute of Medicine say that somewhere between 836,000 and 2.5 million people in America have it. But less than 20% of them are diagnosed, because this thing is so hard to pin down.

So ok, how do you cure a disease that comes and goes, has a myriad of complex symptoms and can barely be diagnosed because it resembles many other illnesses?

You don’t.

At this time, all we can do is treat the symptoms of CFS as they vary over time. And if you think you have it, get ready to take a battery of tests.

The 2013 Magill’s Medical Guide actually has this quote about CFS in it: “Medical treatment and diagnostic testing can be costly as well as useless.”

Usually treating the disease is a combination of the following: antidepressants, nonsteroidal anti-inflammatory drugs, psychological counseling, physical therapy and a mix of homeopathic remedies.

So that’s all the stuff we don’t know about CFS. Oh, and we can’t agree what to call it either. The CDC only uses “Chronic Fatigue Syndrome” because exhaustion is the primary symptom. But some patients find that misleading and prefer “myalgic encephalomyelitis.”

Yeah, trying saying that three times fast. Or just one time slow.

SOURCES:

Chronic fatigue syndrome. By: DeLuca, Patrick J., Ph.D., Alder, Richard, Ph.D., Magill’s Medical Guide (Online Edition), January, 2013

patients-push-for-an-elusive-cure/409534/

39 Replies to “The Disease We Barely Know Anything About”

  1. I have had CFS/ME for 4 years and I can tell you it is very real. At times I have been unable to even open my eyes or feed myself and have had to stay in hospitals with feeding tubes. I have been very lucky with health care here in the UK. It is a devastating condition I got when I was fourteen and will be stuck with for the rest of my life. Nothing hurts me more than when people tell me I am not sick, as if I chose to spend my teenage years in hospitals alone and consequently in a wheelchair for the foreseeable future.

  2. I have CFS in addition to osteoporosis, osteoarthritis, chronic pain everywhere, degenerative disk disease (2 spine surgeries because of it) and insomnia. CFS is by far the worst of the bunch. I don't even drive because of it.

  3. Sound kind of like what I have been dealing with for the last year plus. I checked off many of those symptoms, including the being sick and unable to work for more than 6 months. I Should talk to my doc, possibly.

  4. I most likely have this disease. I've been tired for two years (with some periods of feeling less tired) and I've been unable to keep up in school due to that fatigue and concentration issues. CFS isn't something that can be diagnosed (if I have to believe the doctors here) and it's really a process of elimination. I do not have Lyme disease, Pfeiffer's disease (though I had it years ago, apparantly) and/or Coeliac disease, I've had multiple blood tests which showed nothing abnormal, et cetera… I guess that means that I have CFS. It is anything but fun to have, but I'm learning to cope with it. Still, that doesnt take away that it's even so that when I've had a very emotional or stressful moment, I feel completely tired and ill for at least a week. Really, the only thing I can do is try to stay positive and know where my boundaries are.

  5. It's so sad how my entire view of CFS was skewed by this one girl I knew for years; she got diagnosed with it, passed every class, smoked pot, only had to come to school 2/5 days (for real..) oh and she was constantly having sex with her 18+ boyfriend (as a 15 year old).
    Yea. No energy.. suuuure.. .'
    It was always so amusing to see her not come in for the days she didn't like, but come for the fun classes.

  6. There will be a lot people that mistake depression for CFS (WebMD style).
    CFS is more than just fatigue. The name is misleading.

  7. These are all the same symptoms as autoimmune thyroiditis. That can be difficult to diagnose because you have to see the thyroid antibodies in the blood, and it is also a disease that ebbs and flows. I highly suspect this is just another autoimmune disease that affects hormones.

  8. Egh, the comment section had made me lose a little bit more faith in humanity. Sad it is so.

    Still, I do agree that CFS as a name is very misleading, and will lead people to believe it's a mind thing. Hopefully we can uncover more about this disease in the future, and prove (or debunk and rewrite, if so) something about it

  9. Also stimulants are use as treatments. The stats on the use of mental health drug treatments for CFS work as well as doing nothing.

  10. Why "encephalomyelitis"???? Does it include inflammation of the spinal cord and brain as one of its symptoms?????????

  11. All my life I've heard that some people are "double jointed." Can some people actually be Double Jointed??

  12. A blood test was developed in 2015.
    Something triggers the immune system, turning it on high, where it stays for a couple of years until it pretty much burns out and switches to low, where it stays for good. I have had it since 1973, and, while I have days that are better, and some that are worse, I only had one wonderful, glorious day about 25 years ago, when I felt completely well. Nobody knows why, and it never happened again, but it was fantastic while it lasted.

  13. I have Fibromyalgia, which has a large number of similar symptoms, and is also a disease of exclusion. The primary difference between CFS and Fibromyalgia is that Fibro causes widespread, chronic pain in addition to the exhaustion, unrefreshing sleep and the other symptoms. Both CFS and Fibromyalgia are relatively "new" in the medical world, and are often not believed to be "real" by some, since there are no specific tests to diagnose them. Thank you for talking about this often misunderstood/misdiagnosed illness HSW!

  14. what about biodecodification? It might be useful to understand this disease, or analyzing the particular context of the patient (mode of life, occupation, family, attitude, etc). Big hugs from Colombia (South America)

  15. It took almost two years of testing and running from one doctor to the next until I was dignosed with this shit. Been on antidepressants since and it still only midly lessened the syntoms. At least I can study now, even if it does take me twice as long as everyone else…

  16. My sister has CFS, her school and government is giving us trouble because of her attendance issues and we cant explain ourselves! we (family) just recently been told by a different doctor that she has CFS. all the other doctors just gave her painkillers and coughing medicine last few years!
    she goes to school and comes home and she manages to sleep 12+hours (most) days. her vitamin D and immune system is weak so she has a cold (or cold-like symptoms) once every 2-3 weeks. shes extremely tired all the time even though she never goes out unless its school or driven to weekend school. she says her legs and bones hurt too.

  17. SPASMOPHILIA

    Some scientist HAVE STUDIED, IDENTIFIED AND CURED this modern disease, that comes totally from BIOLOGICAL deficiencies, that is a usually severe deficiency in NUTRIMENTS. However, those scientists, who were in their time real pioneers in their domain, have been made to shut up about their conclusions and success to cure it, because it displeases the big money making medical and pharmaceutical industry, which makes billions each year on the public's poor health and the sales of what they dare to call « medicines ». Of course, an uncured and aggravated case of it CAN LEAD in consequence to psychic disorders, and does in a rather many cases, but thoses disorders, such as depression, for the mildest, but theses disorders are NOT the disease in itself, but its CONSEQUENCES, and the so-called "medicines" given to people in that situation, do NOT CURE it, as everyone knows, but aggravates it greatly !…

    « LET YOUR FOOD BE YOUR MEDICINE » is Socrates quoted to have said. And indeed, the best cure to this is a daily additional intake of vitamins (and oligo-elements), which the body needs and does not find in regular food anymore for a few tens of years.

    In the 80s, with Linus Pauling (Nobel Prize for his research on vitamin C) as main leading voice in that direction, it was commonly recognised that this otherwise inexplicable disease was successfully overcome by nutriment intakes, and the idea was starting to meake its way rather rapidly through the more aware population of the time.

    That is also when started a progressive installment of IGNORANCE OF THIS ISSUE , by refusing it the status of medical truth, and a chase on nutriments themselves in any forms they would appear, so that even those who would could not have access to them as easily as before, or be able to get them at all.

    That is why, in the 90s, began a still ongoing campaign  : any forms of nutriments and supplements rapidly became a luxury reserved to those who could afford them ; they became forbidden and difficult to bring beyond boarders, under fallacious « medical reasons » – such as in Switzerland – that ALL MEDICINES MUST BE STUDIED IN LABORATORIES DURING TEN YEARS MINIMUM AND UNDERGO A MULTITUDE OF VERY COSTLY TESTS , which, in reality, only powerful and rich multinational pharmaceutical industries can really afford for theirs…! They began to be excluded systematically from the main basic popular health insurance contracts, and rapidly grew to become, with most natural therapeutical methods, a « luxury » reserved only for the rich, at the same time as the poor population and public health in general

    It is dramatic for the population and for small businesses offering the people good, healthy, natural alternatives to aggressive and harmful medicines, as they would propose ways and methods to enhance the natural body resistance to diseases and sicknesses. And it leaves the populations most needy and fragile no solution to recover health and vitality, having no other solution for any health trouble, but to resort to the chemical « solutions » offered by the pharmaceutical industry with the pretense that it will « cure » them, wheras it does just the opposite.

    This is the plan.

    If you just take a closer look at the litlle paper stuck in your medicine box, and that mostly everybody throws away upon opening the package without giving it a second look, you will find under the section called « UNDESIRABLE or SECONDARY EFFECTS », the very list of basically all the unexplained diseases this video speaks about. And most of them, today, are of really great impact and importance, as well as they are sometimes deadly.

    And this is only on the small paper displayed in the box to the user's attention : if you could have access to what doctors and health professionals have access to, even though you may not « understand » everything that is said there, you would get the full measure of the dangerosity of those chemicals you are taking in. In Switzerland, prior to 2015, anyone could get a used copy of this repertoire of medicines and their description, if a professional gave them his, which was renewed and completed each year, as new medicines appeared on the market at a fast rate ; but after that, paper copies of such books are no longer available, even to doctor and health professionals, and, having to be officially inscribed as such a professional, their only access is through their computer. Therefeore, there does not exist any more paper copies of such alarming reports as that of the description and content of today's medicines, and such thorough informations have been made TOTALLY unavailable to the common user, who take in very dangerous substances destroying his helath and well-being daily and inexorably…

    This is the plan.

    God help us all.

    M.-M. E. Jones.

    http://www.nobelprize.org/nobel_prizes/medicine/laureates/1937/

    http://www.lanutrition.fr/bien-comprendre/les-complements-alimentaires/les-principaux-complements-alimentaires/les-complements-correcteurs-de-l-alimentation/la-vitamine-c/linus-pauling-prix-nobel-et-pape-de-la-vitamine-c.html

  18. I have this along with fibromyalgia. My Dr says CFS is attributed to Epstein-Barr syndrome which is contracted when one contracts mononucleosis. I had mono in 2002 and Hodgkin's Lymphoma in 2003. It's been a long, strange, painful trip. But, we are learning more and more about this malady every day, so if one Dr doesn't take you seriously, please keep getting opinions until you find a Dr who knows about the syndrome and where it comes from, from your health perspective and how to treat YOU, not just the illness. ❤️

  19. I've had this for over 2 decades. The first 5 , I was constantly bedridden, couldn't stay on my feet without a can, even then not long. Dizziness was as much a part of my as breath for the first 10 years. If I even leaned down from my chair to pick up a pencil, The room would spen. If I was only my feet very long (or trying to do some exercise) moments after I stop I;d be hit with dizziness and the room around me would grow dark as my head swan. If I didn't lay down –fast, I'd pass out. I'm better than what I was now, but my activity is still very restricted.
    I'm mentioning all this because around 10 years ago, doctors started admitting people had died if CFS because organs would shut down from the bodies exhaustion. A couple people were even named along the way but then, suddenly CHS was dropped from the public eye. When people realized it was a serious illness, they couldn't mock it anymore, so they pretended it doesn't exist.

  20. Dear BrainStuff
    firstly I would like to say thank you for making this video as this topic needs to be spread so more people can be aware of cfs. I am 13 and has cfs and have had it for about a year and a half now. It is slowly getting better though :). Mine was caused by having galangila Fever when I was 10 and a lot of family related stress all mixed with starting secondary school. I have had treatment from a special clinic in bath, that has been very helpful and a specialist work with me through my anxiety to help me to. Thank you very much kind regards Isabelle.

  21. Ugh. People always say I look sad. I always have dark bags under my eyes and feel like I have a lead weight over me regardless if I seep 10 hours or 5 hours or eat will Or like shit. My joints always hurt like an old woman. Always feel like my head has a vice on it. Constantly have bloating and diarrhea. It's not always like this….. and when it's not I am able to work so much more efficiently and actually enjoy work. Oh yeah and I'm 21.

  22. CLS.

    Chronic Laziness Syndrome.

    Treatment varies but may include: working a job, volunteering, yardwork, book clubs, church, exercise, and community involvement.

  23. i have all of those symptoms but i believe is because i am fat, i have gained a lot of weight in the last 5 years and it got worse when i got married 3 years ago. i am way less active and i don't eat healthy. having bad circulation causes you numb limbs with little preasure on them, making it difficult to have long sleep times if you don't sleep straight like a corpse which is actually uncommon, having high choresterol in your blood gives you headaches of different types, the muscle pain comes from the inactivity, the pain in the joints is caused by the exesive weight, the things i cannot explain are the lymph nodes and sore throath both of which i have, the throat is minor and i think its because i only drink very cold water and drinks and my air circulator is always on my back when i sleep, causing trouble for my lungs.

    if i have this syndrome that might explain my lazyness but i think is just a vicious cycle started with my new eating habits my wife introduced in my life and that most of my activity came from shool/university friends, now that i am not in any university or school i have no activity whatsoever.

    if this happens to people without overweight or without cholesterol/circulation problems then i would be surprised and it would be serious and alarming. i would still want a explanation for the tender lymph nodes which only appear on me when i have low defenses cause of an infection or common cold virus.

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