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America’s Hidden Health Crisis: Hope for Those Who Suffer from ME/CFS

Posted on by Elizabeth R. Unger PhD, MD and Christine Robinette Curtis, MD, MPH, FAAP

Millions Missing Atl Sept 2016

What would you do if you were going along with your life, got what seemed like a common, flu-like illness, but never regained your health? What if you couldn’t go to work, care for your family, or even leave your bed for months – or even years – as a result? Perhaps worse – what if this happened to your child? Then imagine doctors saying there is no treatment or cure, or even a known cause for the illness that is upending your life or your child’s. Sadly, this is the reality for many people who have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

ME/CFS affects men, women and children of all races and ethnicities. Between 825,000 and 2.5 million Americans are estimated to have ME/CFS. Yet, this debilitating illness remains largely invisible to most Americans, despite costing U.S. society an estimated $18–59 billion annually in medical bills and lost incomes.

Today, CDC recognizes the 25th anniversary of International Awareness Day for ME/CFS and Fibromyalgia. We continue to promote understanding of ME/CFS by:

  • Supporting one of the largest-ever studies of ME/CFS. Seven ME/CFS doctors are identifying major health problems and symptoms of patients with ME/CFS. This will help us develop better and easier ways to diagnose and treat ME/CFS. Early findings contributed to a 2015 report by the Institute of Medicine’s Committee on ME/CFS and have been recently published.
  • Publishing teaching modules through the American Association of Medical Colleges’ MedEd Portal that help medical and health students learn how to diagnose ME/CFS.
  • Developing other urgently needed educational ME-CFS collage-2017-05-11materials for healthcare providers.
  • Bringing together in 2016 a meeting of ME/CFS patients, advocates, health professionals and federal officials to discuss best ways to educate the public and provide resources for patients and healthcare providers.
  • Updating our comprehensive ME/CFS website to make it more readable and useful for the public, patients and healthcare providers.
  • Hosting Public Health Grand Rounds in 2016 to raise awareness and foster discussion about ME/CFS. The presentation, summarized here, has already been viewed nearly 8,000 times.
  • Hosting biannual calls with experts discussing promising ME/CFS research for patients, their families and healthcare providers. All are invited to our next SEC call on May 25.
  • Co-organizing the ME/CFS Common Data Elements project with the National Institutes of Health, which will enable information to be consistently captured and organized across ME/CFS studies.
  • Collaborating with other agencies across the Department of Health and Human Services to ensure each agency’s activities provide the greatest benefit to the American public.

Through this work, and the dedication of those who care for ME/CFS patients, CDC is striving to find better ways to diagnose and treat ME/CFS and to improve the lives of those enduring this illness. Better understanding of ME/CFS may ultimately lead to prevention or even a cure. We are confident that, together, we can make continued progress and that there is hope for a brighter future for patients who suffer daily from this debilitating, chronic illness.

Posted on by Elizabeth R. Unger PhD, MD and Christine Robinette Curtis, MD, MPH, FAAPTags , , ,

28 comments on “America’s Hidden Health Crisis: Hope for Those Who Suffer from ME/CFS”

Comments listed below are posted by individuals not associated with CDC, unless otherwise stated. These comments do not represent the official views of CDC, and CDC does not guarantee that any information posted by individuals on this site is correct, and disclaims any liability for any loss or damage resulting from reliance on any such information. Read more about our comment policy ».

    It has been thirty one years since I fell ill along with many of my travel abroad college class mates with an illness that changed my life and prospects forever. Still there are very few medical text books, and medical school curriculum that include accurate and appropriate information about this illness. Doctors need the information about this illness to help us. And Doctors need a national registry to report us as we are found. After thirty one years, there is no tracking mechanism where the government understands how the illness has changed me or my travel companions, or more than one million other patients (many of which have never been formally diagnosed). Thank you for posting on this very important day of awareness. I look forward to seeing changes to the CDC website, and handling of this debilitating understudied mis-treated illness.

    We greatly appreciate CDC ME-CFS support.

    Norway tracks ME/CFS well. Why not CDC? This “Forgotten Plague” that is much more common than Zika, Ebola, West Nile Polio is still not tracked by CDC to my knowledge, which is gross neglect, esp as diagnostics are being developed.

    Please track this very real disease that affects over 1 million in US and work with NIH to end three decades of discrimination against women and ME and fully fund, based on disease burden, $200M/year for R&D at NIH, CDC. Anything less is gross discrimination. We do greatly appreciate the current progress, but HHS must fully fund M.E. NOW !

    Hi, thanks for the attempt at helping with awareness. Your paragraph description at the top is helpful.

    To be honest, I would prefer CDC not conduct any education efforts until the factual errors on CDC’s website have been corrected and CDC has stopped promoting research with grave methodological errors and inclusion criteria that has been correctly identified as being useless.

    I know it is CDC’s position that it’s important to include all fatigue patients because everyone is “similarly ill”, but this is a tautology. Sick people are sick. Doubtless if people with correctly-diagnosed Lupus, scleroderma, pituitary disease, thyroid disease, cancer, multiple sclerosis, major depression, endometriosis, and so on were asked the same vague questions, many of them would also be similarly ill.

    Please do a better job updating your website and educational materials.

    What is ignored is the devastation this brings to couples. Most marriages fail. There is zero spousal support. For the spousal caregiver/advocate, it’s a special kind of hell where there is no support group, no counselor that really gets it, and very little support from friends or families.

    For me, the economy tanked about a year after the husband got sick — and it took 8 years to get him diagnosed. So from 2007 – 2014, he only knew he was sick all the time and the doctors just looked dumbfounded. I was his only hope for survival… and since my contract ended, it was also hard to find a replacement job. Being honest with employers and saying that sometimes i had to work from home was not helping. I couldn’t win for losing…
    Going through this as a couple has wreaked havoc on any hope of surviving it.

    There has to be a way to help families as a whole.

    Next month(June 10, 2017) will be MY 40th YEAR OF SURVIVAL. I am proud of that as it has NOT been easy. Still am hopeful after all these years.

    I was just diagnosed with M.E a couple years ago? I am pretty new to it and also have TBI which I have had since 1963. Although I am in Scotland I still want all the info on this debilitating illness? The sleep disturbance and muscle and joint pain, along with the other things are ruining my marriage.

    It is so nice to see the NIH and CDC being supportive. However, much of the CDC site hasn’t been updated since 2012 and it would help patients a lot if it was improved.

    I have had ME/CFS for 22 years and have been treated terribly by so many people.
    Doctors have said that I am crazy and have turned their backs on me when I needed compassion and help. One doctor told me to get out of his office before he called the police because I needed my medication to help with the symptoms of this cruel disease. I went to psychologists and did what they told me to do and I got severely ill from the so called treatment. The names I have been called because people had no idea what I was going through even though I told them how sick I am. When I mentioned Chronic Fatigue Syndrome the conversation changed completely.
    I have read everything that I could get my hands on to try to educate my family and doctors. I have been telling doctors how to treat me for decades. It would mean the world to me if I could get some compassion and understanding of how horrible this disease is for me and so many people.
    I have finally been reading some accurate information about ME/CFS and I can’t help but cry because it’s been such a long and hard life just living with this disease.
    Please continue to search for the help we patients so desperately need. I don’t know anyone that has this disease that wouldn’t love to work, travel and live an active life.

    Thank you Dr. Unger for this outstanding blog on May 12th, ME/CFS International Awareness Day. Your photos and your description begins to paint an accurate image of the devastation of this disease. Those suffering and the families affected greatly appreciate this step in changing the tragic history of this disease. Thank you.

    My beautiful friend Liz’s photograph headlines this ME/CFS blogsite. It took everything she had to attend the 2016 International Awareness Day where the photograph was taken, and cost her months in bed following the event. I pray that one day soon Liz’s medical community will find a solution to her decades long medical nightmare. Until then, I am glad that forums like this exist. Thank you for raising awareness and sharing what IS KNOWN about ME/CFS.

    It would be outstanding that you plan to improve medical student and doctor training on how to diagnose ME/CFS.

    It took dozens of doctors and 37 years for my diagnosis. This is unacceptable, and an appalling failure reflecting poorly on the CDC.

    Remaining undiagnosed for so long robbed me of any chance to manage my symptoms and live a reasonable quality of life.

    Thank you for supporting the cause of increasing knowledge of ME/CFS. As individuals, family members, friends, and potential taxpayers, improved identification of, treatment for and potential cure of ME/CFS would have an overwhelming impact – potentially millions of us back to work and spending money in our economy to spend time with our loved ones. Perhaps one of us could be able to return to work and find the cure to cancer, return to work and brook peace within the Middle East; return to work and discover the greatest secret of our universe. No one will never know what we are missing until we are able to show ourselves in society again or be reliable in our physical and mental presence at work and in our families. Your work would be curing people who want to become productive again! As ME/CFS survivors, our lives would be for ever changed. And cured, we could reclaim our place in the world to help improve it!

    Gotta love the IOM clinical criteria….with sufficient rest most of the symptoms gradually disappear leaving the core symptoms as per the IOM criteria. Excessive exertion and wham bam back come the ICC and CCC criteria symptoms. Great to see that the IOM recognises the core issues and isn’t blind sided by collecting symptoms.

    31 years with ME/CFS robbed me of so many wonderful things in life. Things like attending many of my children’s school functions when they were growing up; serving my family, community, and church; and going back to college, just to name a few.

    When I saw the new CDC page here entitled “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” I was moved to tears. Thank you, thank you! I am so grateful to all the clinicians and patient advocates who have been relentless in their endeavors to bring awareness and promote research of this devastating and horribly misunderstood illness.

    Even if we don’t have all the answers just yet, to remove the stigma of our disease means so much to those of us who have been living in the shadows for decades.

    My 29-year-old grandson was just diagnosed with ME/CFS, and the whole family is devastated. Loretta mentioned that she and many of her travel abroad classmates fell ill with the disease. My grandson was a Marine who served in Afghanistan. Could he have caught it there? Is it something you catch, or is it something that lies dormant in your system, like my auto-immune arthritis? — Morgan


    We’re very sorry to hear about your grandson’s diagnosis. Scientists have not yet identified what causes myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a complex illness, and it is possible that it has more than one cause, meaning that patients with ME/CFS could have illness resulting from different causes. In addition, it is possible that, for some or all people, two or more triggers might work together to cause ME/CFS.

    People with ME/CFS often have their illness begin in a way that reminds them of getting the flu. This has made researchers suspect an infection may trigger ME/CFS. In addition, about one in ten people who become infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti will develop a set of symptoms that meet the criteria for ME/CFS. People with these infections who had severe symptoms are more likely than those with mild symptoms to later develop ME/CFS. But not all people with ME/CFS have had these infections.

    Adjusting to a chronic, debilitating illness can be difficult for patients and their loved ones. More information about ME/CFS that might be helpful is available at: CDC continues to work with clinicians and other partners to advance understanding of this complex illness.

    Recently, on yet another sleepless night, I saw a statement on TV on one of their ticker tapes at the bottom “protein found in the blood of Chronic Fatigue Syndrome sufferers”. I have not been able to find any info on this. Does the CDC have any new info for us this new discovery?

    I nearly cried when I happened on this page! I live in a sparsely-populated state with no resources of any consequence for this illness. I have had to educate my PA so that I can receive what little resources I have access to. I was diagnosed with this illness 24 years ago and am permanently disabled. I educated myself and, therefore, I do fairly well because my reality is my “new normal” as opposed to what life was like before becoming ill. The most frustrating part at this point in my life is the “ignorance” of the general public and, sadly, friends and family. Awareness is the key to receiving the support we all desperately need, whether it is financial or emotional, through support groups or insurance, or any services that might lighten the load for those of us that are infected. Thank you for continuing to persevere…for all of us!

    My 17 year old daughter has been diagnosed with CFS. Up until 6 months ago, she was healthy, active, and energetic. She has been complaining of dizziness, lightheadedness, and joint pain that has no rhyme or reason. It is not all of her joints, just knees, neck, and hips. And she has days she does not have pain. She has a headache every day and rarely, if ever, gets relief. She has had depression and anxiety since she was 13 which started after her father and I got divorced. She has been treated and continues treatment. Last year her father passed away in June from a motor vehicle accident. She is very stressed, she is keeping her grades up in school all of this time and participates in a few extracurricular activities; however, she is exhausted all of the time. She is very sad. She has seen many doctors including the final doctor at Pittsburgh Children’s Hospital. She is on an antidepressant, she has a set bed time, she eats a regular diet, but she always feels awful. After all of this information, I still do not know what to do with her to help. Do I change her diet, does she need more extensive psychological care, should we use some form of nontraditional treatment? She has an identical twin sister and an older sister who is 20. They are not having any of these issues. I would like a direction to go in. I am completely overwhelmed.

    I’m so relieved that the CDC has finally, after many years, revamped their website and are offering more accurate information. I have had ME/cfs since Feb 1984, and few of my family members even believe that I’m sick, and one of them has called me crazy. Luckily, my immediate family members do understand my illness and are supportive. In fact, my 2 sons, who are now in their early 40’s, remember my recurring bouts of illness that followed the initial viral illness I had in Feb 1984. This viral illness quickly followed a severe case of flu, and was unlike any illness I’d previously had. My understanding is that certain people are predisposed to contracting this “mystery virus”. I had previously had rheumatic fever, Epstein Barre (mononucleosis), cytomomegalo virus, and an unusually severe case of German measles. My young sons had the flu at the same time as me, but luckily, they didn’t get the viral illness I did (less than one week after I recovered from the flu). In the beginning, I would have a relapse every 3 or 4 months, and the intense sickness would only last a few hours. This apparent relapsing /remitting illness gradually changed, with the relapses lasting longer, and the times of wellness in between becoming shorter. I often missed work and was accused of having “that yuppie flu”. Yuppie flu was the name the media gave the debilitating illness that scores of people like me were suffering from in the mid-80’s, implying that we were just trying to get out of work or were mentally ill. The CDC soon named the illness chronic fatigue syndrome, which I always felt was inadequate, as the debilitating fatigue wasn’t the worst part of this illness. Also, I had a medical background, and I knew that the term ‘syndrome’ implied that fatigue was only a ‘symptom’ of the sickness to which I succumbed every 2 months or so that made me feel like I was dying. I would have fevers so high that I would have delusions. I wanted real answers, or at least a more descriptive name for the illness, and I have done much research. Now 34 years later, I am virtually bedridden, and I miss out on so many family occasions. I’m now 68 years old, and it saddens me to think that I may spend the rest of my life sick.

    Thanks for the opportunity to comment. My frustration is that I cannot get the slightest acknowledgement that ME/CFS even exists from my primary care providers (a #13 rated campus hospital). When I mention it in clinical visits, Dr turns heads away and subject is changed.

    My condition is — pardon the expression — metastizing. It has turned into a number of serious problems inc severe diabetes 2. I’ve never had diabetes in my life.

    Please, I want to be healthy. I no longer believe that my health care system has the same goal. REFORM IS LONG OVERDUE!

    I developed a severe case of bronchitis in Nov of 2002 that lasted almost 3 months. After that I never could get enough rest, was constantly tired, kept a sore throat, had muscle pain in my extremities and had difficulty concentrating. It was all I could do to get myself out of bed. I had a full time job and 2 kids to take care of. In May of 2003 I was finally diagnosed with CFS and was told there is no cure. I was also told that this may be the only “flare” I would have or I may have them the rest of my life. Treatment would be symptomatic. Over the years I have had several “flares”, I’m actually in a flare now. The most difficult part of this “silent disease” is that my family and friends think it’s a mind over matter issue. I can’t tell you how many times I get the response “I’m tired all the time too! May I have CFS.” or “Just pull your self out of it.” Lord I wish I could is my response. I’m afraid of the disease eventually getting worse to where I can’t function. All my prayers go out to anyone with a “silent illness” and there care givers!

    I’ve been sick with ME/CFS for 22 years and bedridden for 9 years. Yet I had an appointment with the new Chief of Rheumatology at the University of Mississippi Medical 2 years ago. She informed me that NO Medical Association, CDC, Dept of Health, etc recognized any such illness. She was young-in her early 40’s~yet said that to this day it is not mentioned in the medical textbooks at the University Medical School! There is no need for me to continue to waste my valuable energy chasing doctors who know NOTHING about ME/CFS. You MUST begin here. Please give us hope!

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