Chronic Fatigue Syndrome is an illness that many may have heard of, but few, in reality, know much about.

The misconception of the seriousness of the disease is in part caused by the use of the name Chronic Fatigue Syndrome (CFS)coined in 1988 by a committee convened at the Centers for Disease Control. Prior to that recommendation, the disease was known by the more intimidating name Myalgic Encephalomyelitis (ME), which is favored by many patients and still used in many countries overseas. Chronic Fatigue Syndrome trivializes the nature of the disease and its impact on the lives of the people who suffer with it.

For individuals severely ill with ME/CFS, merely arising from bed to take a shower, or leaving the house to go to a medical appointment, can cause them to be bedridden several days afterward. Some people cannot manage to get out of bed at all.

The name influences not only the public’s conception of the disease but also that of medical professionals. As a point, in fact, College students and medical trainees who were given identical scenarios were more likely to consider patients described as having myalgic encephalopathy as having a biomedical illness, while patients labeled as having chronic fatigue syndrome were more likely to be thought to be psychiatric cases.

Four times as many women as men fall ill with ME/CFS. Many doctors dismiss women’s descriptions of ME/CFS symptoms as depression or emotional disturbance.

Recognizing the effect of naming the disease Chronic Fatigue Syndrome on patients and doctors an Institute of Medicine study recommended changing the name Systemic Exertion Intolerance Disease.  The name refers to a primary symptom of the illness, post-exertional malaise, which is an increase in symptoms when a victim attempts to do some previously tolerable exertion.  Most patients reach a steady-state level of exertion that they know from experience that they can bear, and exceed it only when absolutely necessary, as they know the consequence will be a subsequent increase in pain, malaise, fatigue, and cognitive difficulties that will last days or weeks.

But even a name change, which to be truthful, has not really caught on, won’t solve the problem when the imagery associated with the disease continues to be benign and misleading. As we all know, images are powerful and associating the wrong ones with the disease only helps to spread misinformation.

An exception is currently on an display in Times Square in New York: a video broadcast by the SolveME/CFS Initiative, a patient advocacy organization, which shows photos of genuine, severely ill Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients.

The SolveMe/CFS Initiative
The SolveMe/CFS Initiative

New Research Encounters Same Bias

These images are quite a contrast to many that accompanied the multitude of news reports about the recent scientific publication about abnormalities in the gut microbiome in ME/CFS.  In June, a team of researchers which I was a part of, reported our discovery that the populations of bacteria in the gut of individuals with the disease are abnormal compared to healthy individuals.  Increased escape of bacteria from the gut into the bloodstream appears to trigger inflammation in some ME/CFS victims.

This new information was the topic of more than 70 articles in the lay and medical press.

All the attention on our work had a chance to educate people about the actual life-robbing nature of the disease.

But the photos chosen to illustrate many of these articles spread persistent misconceptions about the disease.

There were several categories of photographs used to illustrate the news reports about our gut microbiome findings: microscopic images of bacteria, anatomical drawings with intestines highlighted, and photographs of people thought to be experiencing ME/CFS.

But many of the photos of patients with the disease were completely inappropriate, resulting from the misunderstanding that fatigue is not only the primary, but also the only symptom of the disease.

Indeed, one article was entitled: “Gut bacteria can make you tired.”

Fatigue is a common effect of other diseases as well, including multiple sclerosis and cancer.  But no one would illustrate an article about either of those diseases with someone sleeping at her computera woman snoozing with coffee cup in hand, or a woman who has evidently just come home from work, gazing wearily at children’s toys scattered around the floor. Another photo shows a woman lying on a couch with light from a nearby window streaming onto her face.  ME/CFS victims are unlikely to be in such a pose, given that most are quite sensitive to light and some must confine themselves to dark bedrooms.

When the underlying cause of the disorder is finally understood, undoubtedly a new and more accurate name will arise.  In the meantime, it’s important for editors at news outlets and health news bloggers to not only cover the disease accurately but to select images that represent the true nature of the disease that is described by the Institute of Medicine as  “a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients.”

 

-Maureen Hanson

 

Maureen Hanson is Professor of Molecular Biology and Genetics at Cornell University and conducts NIH-supported research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. She is a Public Voices Fellow of The OpEd Project.

50 COMMENTS

  1. Thank you for your continuing work and advocacy on behalf of people with Myalgic Encephalomyelitis (PwME), Dr. Hanson! You are helping to start to bring hope to so many sick people.

    • This is not about ME and will not help us. We need an accurate diagnosis and this continues to set us back and bury us in the fatigue quagmire.

  2. This is more misinformation and the same fabricated made up story of the ME/CFS script. CFS is not just a name for ME or there is no evedince it was ever intended as such. So the rest of this nonsense just falls apart. The truth is that CFS is not ME.

    • Agreed, people don’t seem to understand you can’t just say something is Myalgic Encephalomyelitis (whatever that is) without some type of biomarkers or some other type of objective evidence to indicate this. The term syndrome is a little esoteric and I don’t completely understand it. Cause it’s used for conditions that are definitely real like down syndrome. But than I get the impression that with cfs it’s meant to describe a set of loosely defined extremely varied symptoms from patient to patient. And maybe some level of ignorance as to what causes, and drives the condition.
      Having said this I have suffered from cfs for 20 years, know as well as I can know anything the symptoms are not imagined and they are as devastating as the author is alluding to here.
      I think the real problem isn’t the name so much as it is the attitude by certain authority figures who for over 100 years have characterized as if it were fact, these “syndromes” as psychological. And unfortunately the lay public and doc’s who’s expertise falls out of this area takes it as such. Which leads to no support one would otherwise get from friends, family, strangers, ignorant docs, etc. Which perpetuates the disease. Opps! “syndrome”

      • No one has yet been able to give me an explanation of the difference between a “syndrome” and a “disease” when trying to make light of my condition because “it’s only a syndrome, not a real disease.”
        AIDS is also a syndrome, and it kills people. That’s pretty serious.

    • Umm. In the US, unfortunately, cfs is the term used for
      Cfs/me. So, yes, it is the same disease and when being critical of the name (which is understandable) further margianalizes people who have been diagnosed with cfs or cfs/me.

      • Not true. But OK, even if it were, why would credible advocates allow it to continue? Would AIDS patients have gone along with GayPlague/AIDS or GRID/AIDS

    • Agreed, people don’t seem to understand you can’t just say something is Myalgic Encephalomyelitis (whatever that is) without some type of biomarkers or some other type of objective evidence to indicate this. The term syndrome is a little esoteric and I don’t completely understand it. Cause it’s used for conditions that are definitely real like down syndrome. But than I get the impression that with cfs it’s meant to describe a set of loosely defined extremely varied symptoms from patient to patient. And maybe some level of ignorance as to what causes, and drives the condition.
      Having said this I have suffered from cfs for 20 years, know as well as I can know anything the symptoms are not imagined and they are as devastating as the author is alluding to here.
      I think the real problem isn’t the name so much as it is the attitude by certain authority figures who for over 100 years have characterized as if it were fact, these “syndromes” as psychological. And unfortunately the lay public and doc’s who’s expertise falls out of this area takes it as such. Which leads to no support one would otherwise get from friends, family, strangers, ignorant docs, politicians, etc. Which perpetuates the disease. Opps! “syndrome”

    • Sorry, I think you are misinformed. At least one world renowned researcher concluded after testing blood samples of hundreds of patients diagnosed with CFS/CFIDS in he U.S. and M.E. in Canada and Europe published results showing the two are in fact the same illness.

  3. This is more misinformation to further the bogus ME/CFS paradigm. CFS is not just a name for ME, nor is there any evidence that it was intended as such. This is just repeating the same false narratives.

  4. Thank you for the great article. Pictures of sufferers who simply look tired don’t accurately portray the devastation of the illness and add to its trivialization.

    Not only are 25% of ME/CFS sufferers bedridden (often for years), but many people are also confined to wheelchairs. At the “Millions Missing” protest rally in Seattle a few weeks ago, I counted 4 people in wheel chairs out of about 20 participants.

    ME/CFS is a disease that has fallen through the cracks of modern medicine. Articles like this one help explain why.

    • Articles like this and these fake ME groups like ME action and fake ME campaigns such as millions missing add to the confusion and misdiagnoses. It is not just a name or created by gender bias.

  5. Thank you Dr. Hanson. I’m very grateful you are employing your scientific stature to address collateral problems — as above, the fact that CDC chose to give the disease a name that is misleading and dismissive and implies that the patients are whiny malingerers with nothing more wrong than the tiredness any working person might feel on a Friday afternoon. So far from the truth!

    In line with this, please encourage your colleagues to VOTE November 8th for candidate JOHN PLUMB to represent your 23rd Congressional district of New York in the U.S. House of Representatives.

    John Plumb is running against corporate-owned multi-term incumbent Tom Reed, who is sure to serve pharma and health insurer interests rather than PWME. Reed is into dirty tricks. One episode was setting up phony Facebook and Twitter accounts in Plumb’s name to discredit him with phony posts. Just the the other day a fresh $300,000 of Republican money, mainly dark, poured into Reed’s coffers to bolster the Trump supporter’s attack war chest. Total spending on this rural battleground seat is set to top $5 million by November 8th — a ridiculous sum, though a welcome boost for local media outlets.

    The 23rd extends north to progressive Ithaca, but mainly comprises the “Southern Tier” of poor, semi-rural, and politically conservative western New York State that stretches along the Pennsylvania border. It starts east of Elmira, takes in Corning, and runs west of Jamestown. The urban democrats of Buffalo and Rochester to the north are neatly penned up in their own congressional districts.

    John Plumb is a native of the area, attended Notre Dame, earned a Phd in Aeronautical Engineering, and after a naval career served in the Obama White House as a military advisor. He’ll be able to follow the electrons in the methylation cycle as well as in the Navy’s atomic powered subs. Herewith background from the Buffalo newspaper:http://buffalonews.com/2015/07/08/former-white-house-military-aide-plumb-to-challenge-rep-tom-reed/

    • Very disheartening that a Cornell professor would spew this ME/CFS nonsense uncritically. If CDC gave “the disease” CFS a bad name then change it, but not to that of another disease.
      I have fatigue. I have encephalomyelitis. It is beyond ludicrous.

  6. I am so grateful to Dr Hanson for giving a voice to so many of us suffering from M.E, who are often too sick to speak for ourselves.

  7. I got it from the hep b jab I had to have as a dental nurse, iim surprised that is never mentioned since it was originally called “the royal free disease” when lots of nurses at the royal free hospital in London came down with it after their jabs ,I read a book about it written by a doctor who had CFS ,why is no one doing research into that ? Because its something they want hidden as they don’t like anything “anti VAX” *sigh* probably not everyone who has CFS got it that way but a lot of us did !!

    • mine was exactly the same, hep b for my nurse training back in 1997, I have spoken to many other nurses and hcp’s and they have also been ill after this. I agree there are many subsets to this illness, probably due to the causative factors ie some due to vaccination, some trauma etc.

    • I hadn’t had a shot of any kind for years and years before getting CFS. Mine started with a 105 degree fever that came on in just the length of time it took my boyfriend to gobble his dinner.
      I took my first bite of dinner and apologized that the food tasted funny, it must have gone bad without me noticing, and he assured me it tasted fine. I tried a second bite, which also tasted funny, and suddenly felt I should lie down. By the time he finished — and he’s not a slow eater — I was already delirious, and stayed that way for several days.

  8. Wrong. It’s not about having a serious-sounding name. ME and CFS are simply two different diagnoses: the first is a specific neuro-immune disease, the second a term for unexplained fatigue and malaise. Plaese stop combining them and don’t use one name when you mean the other.

      • Oh Erik the true ME advocates have explained many times that the Tahoe story or conspiracy theory is just that. The real coverup is that of the CFS apologists and fake ME groups who work frantically to spread this ME/CFS misinformation. ME is not a fatigue syndrome.

  9. I would like to shed an awareness which the majority of Drs world wide are not educated about simple vitamin deficiencies & the devastating effects that have on the human body in particular the nervous system.I am speaking from personal experience when 30ys ago I literally crashed physically( profound fatigue )8 mths post natally after my 3rd baby.After 5 wks hospitalisation,5 specialists ,surgery,4 antidepressants that nearly killed me with side effects. I saw GP out of my city ,ME was my diagnosisThen 3yrs ago I crashed again( felt I was dying) 2 brain & thyroid scans 7 specialists this time who never had a clue why I had neurological symptons & profound fatigue ,tremors,falls,pins & needles,screeching tinnitus,numbness,Incontinece .6 mths later a diligent holistic GP confirmed my diagnosis in 2 visits a simple vitamin b12 deficiency with genetic mutation MTHFR low cortisol,liver& gut inflammation.I diagnosed my hubby as well but what makes me really angry is we both have permanent nerve damage hearing,memory loss,peripheral neuropathy SACD thanks to late diagnosis & treatment.The serum b12 low range here in Australia is grossly inaccurate as ours was in so called norm range so we were misdiagnosed from a blood test despite we both had severe neurological symptons which were never recognised as nerve damage occurring. I now know below 450 nerve damage has already occurred in the spine.
    We could sue but instead we both want to promote a world wide recognition of this vitamin deficiency which leads to pernicious anemia so to stop & prevent all needless suffering that is occurring.Check b12awareness.org for life saving facts.

  10. hi everyone yes cheers to doctor hanson. I speak with her and she is a wonderful caring person that is working very hard on our behalf. now I have had disease since childhood and have been homebound for last 5 years. I have sub set that has given me cancers dysautonima ect. here is the thing i’m will to fight crawl do what ever I can to get this disease the proper funding and recognition ie Hollywood philanthropists NIH. CDC . I need a number count in each state. I need people to e mail me please and we will make this happen. We are on the verge of busting out on this disease but we need money now. Please mail me and lets fight like AIDES and MS. lets get our do. Or we can wait and die slowly. GOD Bless JIMMY

  11. Im a former iron worker and body builder. Ive eaten right and worked out obsessively most of my life. Dr.s try to dismiss me as if im just “not trying hard enough” on good days I can pull an engine from a car with my hands. On bad days I need my wheelchakr to get to the bathroom. I doubt the issue is my will power or a lack of inherent strength exercise will solve. But I have a doctor that is not even half as strong as me pretending im just lazy. Ive worked too hard while injured to have someone that has lived such an easy life discount my efforts. Ive got my calluses and scars , unfortunately strip mall doctors repeating insurance company rhetoric dont understand some of us have actually worked ourselves into this condition by trying too hard…

    • Doctors have a blind spot where CFS is concerned.
      If you ask them directly whether someone can become deconditioned over a weekend, they will tell you that it takes several weeks.
      But when I told them that one day I could walk 4 miles to/from work, a couple days later I had to take the bus, and a couple days after that just the 4 blocks from the bus stop to my desk required an hour with my head down before I could work, they immediately brought up the “deconditioned” red herring.
      So I again led them through the “no, it takes weeks” question, and when I went back to the CFS, they stubbornly went back to the nonsense that I magically became deconditioned in a fraction of the usual time and therefore just needed to exercise my way back to health.
      We went through this same game playing several times before I realized that he was simply too stubbornly attached to the idea that CFS=deconditioned to ever agree that he’d just told me that you can’t get deconditioned that fast.

  12. Thank you for speaking up. Please continue to educate people across the World, what ME & CFS really are – Torture.

  13. Thanks for shedding light on the ongoing media and government cover-up of this nightmarish disease! I got the flu December 24, 2009 and went from being an active, athletic RN who worked full-time to completely homebound by a disease I’d never heard of!

  14. As a mother of a young woman who has ME, I have observed and lived with someone having this disease for 16 years from when she fell ill with it in 2001. I hadn’t a clue and was desperate seeing my then 16 year old having hypochondriacal phasing in and out symptoms that were independently crippling. I thought it was psychological at first, but we were both in a maze. The really sad thing about ME is the taste of normal days, sometimes for several days which gives the impression to friends and family one is “swinging the lead”, a term used for a malingerer. Luckily we had access to the Internet then and an understanding GP who knew neither of us were reactionary to every little illness. In fact we hardly ever needed the doctor.

    One day I came across an ME website and read the criteria and daughter had virtually all of them. Periods of nausea, muscle twitching, abnormal response to heat and cold i.e very poor temperature regulation, debilitating migraine attacks, inability to sleep, inability to wake up, absolute exhaustion to the point of not eating for days or able to complete hygiene tasks. This went on for around 2 years.

    As a trained nurse myself, and daughter not having a diagnosis as my area had and still has no support services, I soon realised daughter’s energy was like a bank overdraft. If she spent a £/$ worth of energy, she seemed to have to pay double back before she could function again. Even this was not in any pattern we could plan anything. I sank into a severe depression myself for seven years because my own life was on hold for what always seemed waiting for her to keep our plans, then disappointment as she rarely ever could.

    The point I am making saying all this is I now suspect a lot of problems with getting understanding about ME is the bad diagnostic criteria, in the UK anyway. Six months of extreme tiredness etc is too short because I suspect this encompases a lot of post viral fatigue where people taint the evidence of ME recovery. I suspect this is why we have a lot of people believing they have recovered from genuine ME, when they probably didn’t have the same disease. This makes those who find such treatments makes them worse are often deemed to be not helping themselves, or that they are somehow psychologically resistant to accepting help. Even my own daughter has recently been through the UK tribunal court system and lost because people deemed to be experts and advising the judge used this excuse. The GP implied daughter not trying to help herself because she did not take high dose anti-depressants, and the disability “expert” seemed to actually scoff at my daughter when daughter stated she found seeking help relating to what the PACE trial recommended, even after 16 years, was also not constructive in trying to get herself better. When we have so-called experts like this deciding on the support for people with ME we are in a sorry state.

    • PACE trial was on CFS, not ME. This ME/CFS garbage conflates and confuses, creating the misdiagnosis and mistreatment.

  15. Thank you Dr. Hanson for your work. It is heartening to know there are a few out there dedicated to researching this devastating illness. I am in my 26th year of this disease, going from a robustly healthy individual to being bedbound for the first years. Now I still struggle with activities of daily living. God bless all who live with this illness.

  16. Thank you so much, Maureen!

    and for a little constructive criticism, you stated, “Some people cannot manage to get out of bed at all.” I would STRONGLY suggest you use the appropriate language and not contribute to this villifying of very sick people who CANNOT get out of bed by removing the “manage to” from that sentence, which triggers misperceptions as well. I think if you reread this as a lay person, you’ll understand the many ways it causes/perpetuates confusion, misinterpretation, and even the continued stigma, which is the very thing you are trying to stop.

  17. I’ve been living with M.E. for many years and even now sometimes I don’t always balance myself and end up paying the price for it. To some extent I push through the exhaustion unless it takes over, but one thing too that never leaves is the nerve pain, it has various degrees but is always there along with brain fog and memory loss. Over the past 6 months my doctors seem to take it more serious which I’m now more forthcoming when I am having flare ups. Unfortunately this disease is far more than chronic fatigue.

  18. I have had ME for nineteen years. I have spoken to doctors of the WHO in Switzerland, who confirm that the diagnosis of ME was made in 1969, and is unchanged. It belongs in the class of neurological illnesses. I read a book by Dr David Bell, and his list of symptoms rang clear bells that this was it. My GP at the time didn’t believe me and tried Prozac, but that just damaged my liver. My next doctor was better educated, and labeled me with ME. I also have Fibromyalgia, verified by a Rheumatologist. This last weekend, I was really suffering from two days of dental surgery in a row, mainly from the adrenaline based anaesthetics. I couldn’t move for two days, and was too stiff and sore all over to go shopping on the third. I popped a 15g Codeine, and it felt like a miraculous cure, and I was able to do some shopping. Sometimes opiates are needed to break through and get me moving again. But only short term. I’m off to a quiz night tonight, so I have to balance clarity of thought with the ability to move and drive the 40km distance. It’s my one social pleasure of the week, so I feel obligated. To Codeine or not? But this talk of Chronic Fatigue Syndrome is silly. Only in America where the health system is run by insurance companies (which are conscience free money sinkholes), would authorities be allowed to vilify and torture patients in the name of medical science. The rest of the world knows better. Like with your Presidential election candidates. They wouldn’t be allowed to stand for office anywhere civilized.

  19. Thank you Dr. Hansen, you point out clearly that CFS should never have been used to define a disease process like the IOM DID.
    AND YOU SAY CORRECTLY THAT THE NAME HAS NOT CHANGED .

    At the end of the article you explain that the presentations of the research continue to repeat CFS or CFS name which continues to dismiss very ill people.

    Dr. Hansen your last paragraph is so important: below.:
    “When the underlying cause of the disorder is finally understood, undoubtedly a new and more accurate name will arise. In the meantime, it’s important for editors at news outlets and health news bloggers to not only cover the disease accurately but to select images that represent the true nature of the disease that is described by the Institute of Medicine as “a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients.””

    • CFS does not define any disease process but a symptom syndrome.
      This last paragraph is just appealing rhetoric that has been bandied about for decades. The cause of heterogeneous and mixed misidentified groups will never be found.
      And the same buzzwords: serious complex disabling etc. So is mental illness.
      Very ironic telling journalists what to do while doing anythin but. More sophistry and spin.

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