The Disease We Barely Know Anything About


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. So what do you think we should call this miserable
condition? If you have any ideas that aren’t “first!” let us know in the comments.
While you’re considering a name, why not stop by our home base at HowStuffWorks.com,
where you’ll find more on being tired, feeling like crap and the failures of the medical
industry.

79 thoughts on “The Disease We Barely Know Anything About

  1. The monetary system causes Chronic Fatigue Syndrome…
    Our humanity and our time on Earth have been sold away.

  2. Any Emma Blackery fans? Is it fair to say I thought of her during this video?

  3. Homeopathy? So… PLACEBO? It can make sense to treat something psychosomatic with placebos, but I can't shake off the bad taste of giving credence to a thing like that.

  4. cfs lol I think it's sounding more of a label than a syndrome lol it's just a way of saying we don't know what's wrong but we do believe you may have cfs lol more of an excuse you ask me lol if someone truly feels that shifty for six months maybe it's just time for people to start getting a second and maybe a third opinion… but to me the general bases of symptoms match a bunch of disorders not that there's a lot that don't have this list but none the less a lot do have these symptoms a good way to know is check webmd if new to medicine and diagnosis… shoot maybe you just have more than 1 disorder that coexist with one or more disorders… they say they have no evidence to back up this label so to me it's just a label or an excuse to tell certain people they need a form of treatment that from my glancing research at this myself never seems to ever help it… shoot this could be as simple as an allergy to an everyday chemical or something they may not use due to certain times of the year… this logic is what's wrong with medicine and people need to be more certain of what doctors they consider putting there life into… either that or begin learning about medicine and anatomy on their own…

  5. My best friend has it, and I wish she didn't.. 🙁 She can't go to school because sometimes she's ill, she has bad anxiety due to it, and need the rest. She has it quite bad. I wish we knew how she got it. I'm worried for her, this is a real eye opener.

  6. Twenty second! No but seriously, hasn't CFS been linked to Vitamin D deficiency/Daylight sickness? I thought I remembered this from college…?

  7. I think the fact that anti-depressants and, particularly, homeopathic remedies, are used to treat it is a pretty good indication that it's all in peoples' heads. Not getting fresh air, sunshine, and exercise will screw anyone up and send them into a downward spiral that makes them avoid the very things they need.

  8. funny this video was uploaded the same day as this was published:
    https://www.sciencedaily.com/releases/2016/05/160517101527.htm

  9. sounds like this is just one of the symptoms us with Ehlers Danlos syndrome suffer with every day, I can count the number of restful night I have had in my lifetime on one hand, and I am 45

  10. I have to admit I remain unconvinced this is a real condition. Why does it only seem to affect upper middle class people? Are the poor just pushing through it, or is it brought on by an affluent lifestyle?

  11. 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.

  12. 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.

  13. 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.

  14. 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.

  15. 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.

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

  17. 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.

  18. 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

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

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

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

  22. 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.

  23. 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!

  24. 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)

  25. 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…

  26. 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

  27. 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. ❤️

  28. 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.

  29. 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.

  30. CLS.

    Chronic Laziness Syndrome.

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

  31. 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.

  32. the reason they might have psycho symptoms is that most of these MDs don't even know what CFS is. Brain Fog, Fatigue, unrefreshing sleep. There people who they have it but really dont.

  33. "30+ YEARS OF HELL"
    I'VE LOST EVERYTHING…
    MY MODELLING CAREER, MY EDUCATION @ BYU, MY PUBLIC JOURNALISM GOAL, POLITICAL & CONGRESS-WOMAN GOAL, MY REAL ESTATE LOAN MANAGING & BANKING JOB. MY BEING A HANDS-ON MOM [I USED TO PRIDE MYSELF AT BEING ABLE TO MULTITASK WELL FOR MY FAMILY], MY EX-HUSBAND & LATER BOYFRIENDS. I CERTAINLY DON'T WANT TO DRAG ANYONE ELSE INTO MY MESS SO I DON'T GO OUT ANYMORE. TO CONTINUE – I ALSO SANG PROFESSIONALLY, PLAYED THE PIANO & FLUTE ALL MY LIFE. I ENJOY SKETCHING & MAKING CRAFTS, DANCING [I TAUGHT DANCE & BANKING – TELLER TRAINING INST.], ROCK CLIMBING & EDUCATING MYSELF ON SURVIVAL SKILLS, MY HAPPY GO LUCKY PRESENCE: OVER-ALL —– MY LOOKING TOWARDS A FULL LIFE WITH GOOD OR AR LEAST DECENT HEALTH, A CAREER, MANY, MANY GOALS, ETC.
    AS YOU CAN SEE, I WAS BLESSED WITH AN INCREDIBLE LIFE!
    I LOVE "LIFE" SOOOO MUCH & AM STILL DEDICATED TO MY DAUGHTERS & LEARNING TO LIVE WITH THIS YUPPY DISEASE [LOL, THEY USED TO CALL IT THAT OR EPSTEIN-BARR DISEASE]…I AM HOPEFUL WE WILL FIND THE ANSWERS & POSSIBLY EVEN A CURE! I'VE BEEN THROUGH THE RINGER TOO MANY TIMES!!! IT'S BECOME TOO EXPENSIVE TO KEEP TESTING FOR THIS & FOR THAT, & WELL, IT DOESN'T MAKE SENSE TO KEEP RUNNING INTO DEAD ENDS. SO, I DON'T EVEN GO TO THE DOCTORS ANYMORE, EXCEPT I WAS HOSPITALIZED A YEAR AGO WITH STAGE FOUR PNEUMONIA, FINDING POLYPS IN MY LUNGS & TUMORS JUST ABOUT EVERYWHERE. IT'S BEEN ESPECIALLY HARD ON MY GIRLS 🙁
    THANK YOU FOR READING. I AM STILL LOOKING & SAVING UP ALL MY ENERGY TO LIVE MY LIFE AGAIN!!!!! ~ PEACE

  34. I'm so sorry, but I wanted to add to my comments…
    IF ANYONE KNOWS OF AN EXPIRAMENT PROJECT OR A CURE PLEASE-PLEASE REPLY TO ONE OF MY COMMENTS HERE OR MY YOUTUBE CHANNEL!!!!!
    I WOULD BE WILLING TO TRY A-N-Y-T-H-I-N-G REGARDLESS OF WHAT I WROTE PREVIOUSLY! THANK YOU SOOO MUCH!!!
    GOOD LUCK TO EVERYONE WHO FACES THESE DISABILITIES & ILLNESS OR ANYONE WHO IS CLOSE TO SOMEONE INFECTED! ~ BLESSINGS!

  35. i have these symptoms but my doctors dont care they just say i have a small weak bronchitis and im like iv been fainting and feeling this #!#! for ages stop acting stupid and help me!!!

  36. Thank you…I have 5 from the 1st list and 11 from the 2nd, going on nearly 5 months. My doctor guesses it might be but it hasn't been quite 6 months. She'll see me then. In the meantime, I can't do much of anything, and when I try to push back the constant exhaustion, back I go into collapse. For now I'm said to suffer from chronic sinusitis and depression, with swollen lymph nodes. Frustrating "garbage pail" terms for everything; just want my life back

  37. I was going to share this, but stopped when she said, "Some people don't even think it's real." Or words to that effect. We should not even have to deal with that stupidity any longer.

  38. I've had the worse flu in my 51 years. .three weeks later and my fibromyalgia and chronic fatigue syndrome etc has got worse..tried so much different vitamins but no improvements. ..no way out..only a miracle from GOD. ..prayed for many years and nothing.
    Hard to believe anymore. .😢

  39. I have many of these symptoms, I was diagnosed with Asperger's and ADHD when I began asking questions to doctors about my sleep. Took 3 GPs, 2 psychologists and a psychiatrist but most of these are now gone…except I still don't get enough sleep :/

  40. Excellent Video! Forgive me for chiming in, I would love your thoughts. Have you considered – Dinanlinson Rebooting Health Approach (do a search on google)? It is a great one of a kind product for getting rid of chronic fatigue syndrome without the headache. Ive heard some super things about it and my GF at last got great success with it.

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