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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 , , ,

15 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.

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