ME/CFS: Making strides to enhance the lives of those living with ME/CFSPosted on by
Post last updated: May 14, 2019
How would you feel if you were living your life and you suddenly came down with what seemed to be the flu? What if this flu-like illness seemed to go on forever, and you never returned to your normal self? What if your ability to participate in your regular physical or mental activities caused you extreme fatigue and it took you longer than normal to recover?
What if these occurrences persisted for months or years? What if you were unable to take care of your family, couldn’t go to work, woke up feeling like you hadn’t slept at all, and you were confined to your bed for months? Could you imagine what your life would be like? What about if this happened to your child?
Then imagine that you went to your doctor, and they told you there’s no treatment and no cure for your symptoms? What if your doctor told you that you were making up your symptoms or that what you were experiencing was all in your head? Sadly, this is reality for many people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
The Institute of Medicine (IOM) (now the National Academy of Medicine) describes ME/CFS as a disabling and complex illness. Research has shown women and people ages 40 – 60 are mainly affected; however, ME/CFS does not discriminate across sex, age, or racial backgrounds, and anyone (men, women, and children) can suffer from it. An estimated 825,000-2.5 million Americans are affected by this illness and ME/CFS continues to be largely invisible in the U.S. Over 80 percent of people with ME/CFS have not been diagnosed. This “invisible” illness costs the U.S. about $18-51 billion annually in medical costs and earning loss.
As CDC commemorates the 27th annual ME/CFS and Fibromyalgia Day, we reflect on the reality that there are still millions of people living with this debilitating illness undiagnosed. Those living with ME/CFS know all too well how slowly research has progressed. Yet, there is a growing sense of optimism that progress is being made.
Following a 2015 report from IOM, stakeholders began to work together to give clinicians and researchers guidance for diagnosis and tools to fully characterize the many facets of the illness. The first set of ME/CFS Common Data Elements (CDEs) are now available due to the Centers for Disease Control and the National Institute of Neurological Disorders and Stroke (CDC/NINDS) project and innumerable hours of stakeholder input. These CDEs are important tools to help researchers collect, store and share information about the illness experience of participants in their studies.
ME/CFS expert clinicians are coming to consensus around best practices for laboratory testing and drug therapies to treat symptoms. The National Institutes for Health held a research conference in April 2019, bringing new and experienced investigators together to share ideas and stimulate research. lt is important for the medical community to envision ME/CFS as a medical mystery that needs to and can be solved, and that requires the attention of the brightest and the best clinical minds.
We can start to envision a future when a patient with ME/CFS will consult a physician who will be able to provide a diagnosis, explain the possible course of the illness and prescribe targeted therapy. While we aren’t there yet, this is a vision we see as a possible future with continued progress.
Over the course of the past year, CDC has continued its efforts to promote continuous ME/CFS research, surveillance, and comprehensive educational resources for clinicians, as well as for the general public. Activities in this effort include:
- Partnering with local and state health departments to integrate an ME/CFS optional module into the Behavioral Risk Factor Surveillance System (BRFSS). This partnership will aid in each state’s effort to collect ME/CFS data and learn more about the burden of ME/CFS in their state.
- Partnering with the National Association of School Nurses, to collect data related to conditions causing excessive absenteeism, as well as educate school nurses about ME/CFS in younger people. This will enhance our ME/CFS surveillance effort among pediatric and adolescent populations.
- Partnering with Kaiser Permanente, through the Vaccine Safety Datalink program, to identify ME/CFS cases among the managed care organization’s patient population. This program will determine how to identify ME/CFS using electronic medical records and the process will help educate the medical providers in the managed care organization about ME/CFS.
- Partnering with the Georgia chapter of the American Association of Pediatrics to ensure its members are properly educated about ME/CFS. This partnership will provide CDC’s ME/CFS program an opportunity to continue its educational outreach with local organizations with hopes of expanding to additional medical professional organizations at the national level.
- Continuing its research efforts through the Multisite Clinical Assessment of ME/CFS research project. Engagement with study participants is ongoing with the hope of developing a long-term follow-up or registry system.
- Continuing to work with various stakeholders in developing educational materials for CDC’s ME/CFS website or in other digital formats to educate the public and healthcare professionals. In addition to incorporating the 2015 IOM recommendations on ME/CFS, the current website includes factsheets and patient stories.
- Publishing continuing education modules to ensure clinicians are educated and prepared to properly diagnose and treat patients living with ME/CFS. The continuing education module prepared by Medscape titled “Diagnosing ME/CFS: The Experts Weigh In” is part of a series of CDC-sponsored continuing medical education courses on ME/CFS .
As we commemorate ME/CFS International Awareness Day, CDC continues to work to promote awareness and education around ME/CFS.
35 comments on “ME/CFS: Making strides to enhance the lives of those living with ME/CFS”
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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.
Thanks for recognizing this important day for ME/CFS and for all your good work.
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.
Please educate physicians about this illness.
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.
It is great – Thank u so much!!! please keep on with it and help us out.
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: https://www.cdc.gov/me-cfs/index.html. 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!
My wife and I were Golden children at the top of our body building game when this hideous disease cut us down. It reduced our lives to just north of nothing.
I was 33 yrs old living in northern California in 1993. I was serving my country in the United States Navy. The events that lead to infection were identifiable. There was a definite viral etiology. Onset was acute and devastating. I watched our beautiful bodies get disassembled piece by piece. I watched our faces go from bright and full to gaunt and drawn up like the old. The photos are shocking.
Now, 25 yrs later I look back on the war we fought and are fighting with this disease with utter disgust. Our lives were taken from us though we did not die. What we are is high functioning sick people at this time. We are at best 50 % of who we were.
April 1990 was the exact time my life became unlivable. I came down with a very extreme flu-type illness from which I never recovered. After being drugged to death, and thrown out! of numerous doctors’ offices and clinics, diagnosed as depressed or delusional, I proceeded to get fleeced from “specialists” who claimed to have the cure for what I knew was “Yuppie Flu”. In my previous life, I was a long-distance runner, a weight lifter, working more than full time, and rehabbing my Victorian country home. After nearly 30 years of a life half lived, I got cancer and the standard treatments, needless to say, wiped out every baby step I had ever made towards even the semblance of functioning. Cancer was such a different experience. This is what you have, this is what we’ll do.. and HERE are your support systems. Almost a relief.
At age 52, I got sick with a viral cold. I almost died in my bed alone. I knew I had, in the past, been easily affected by common illnesses but, suddenly I was too sick to leave my apartment. One day I am a weight-lifter/body builder the next day a life close to death. I am now 61 years old and really never properly diagnosed with ME/CFS. At 52 my doctor listed Fibromyalgia as a likely issue. I’ve had every possible test, examination, bloodwork and discussion available in the Cleveland Clinic foundation, Metro Hospital and Akron General Hospital. I have had appointments with virtually every department and over 25 specialists for the last 9 years. After discovering ME/CFS on my own research, I printed files of general information for my doctors to review and I made follow-up appointments. Not one doctor read the file nor researched it. In 2019 my PCP listed chronic fatigue in my file. My immunologist doctor documented my immune dysfunction and had me infusing a solution to help build an immune system. It is amazing how stubborn a group of people can be to admit no knowledge of a definite medically proven illness. I had to quit working and a few years later I was awarded social security-disability. It has been a really hard decade. Now I live out of my bed. I am orthostatic. So standing or sitting is difficult. Maybe treatments will get better someday.
I was diagnosed with CFS twenty years ago. Now, at age 54, I continue to feel completely isolated due to the CFS and not being able to find a functioning support group. I’d like to hear from others with CFS, and I’d like to find opportunities to share my experience.
Is there a test for ME/CFS. I have been suffering for many years:
Major Deep depression
Major chronic pain
Major chronic TMJ
And much MORE
I was never like this, During 1982-1994 I would go out almost every weekend dancing, not just dancing, salsa 💃🏼, merengue 💃🏼. I was not a drinker or a smoker. I just love to dance. Even after having my two boys I still dance, but at home. I also worked if I wasn’t working I was taking college curses. Now the chronic pain, physical, mental activities causes me extreme fatigue, so dancing is no longer fun it’s painful 😓
It is wrong to say that there is no treatment method for CFS/ME, and it is correct that the person does not know the treatment method. CFS/ME may malfunction due to external electromagnetic wave disturbances in the process of being transmitted to organs through the electrical function of the brain or neural network.
CFS is a disease state in various organs due to a breakdown in most of the brain signal production and transmission processes in the brain.
Treatment is easily possible by removing the cause of electromagnetic disturbance in the brain and tuning the brain-body control system.
ME is a condition that accompanies severe pain such as gout in CFS patients who are affected by high uric acid. ME can be cured in 3-6 months if uric acid excretion is promoted while drinking clear water after CFS treatment.
As if a new antibiotic concept was introduced to an infectious disease, an invisible disease can escape the influence of an invisible energy support and can be repaired like a piano car computer malfunction.
I was diagnosed with ME/CFS after I had covid almost a year ago.
Thank you for this information
I agree that there is a lot more awareness needed. I am blessed to have an amazing doctor partnered with an occupational therapist who have been so helpfull.
People have no idea what we go through. From being perfectly normal busy fully functional to bed and home bound. Being an involved and active mother to no longer being able to attend school functions or sports.
I am very blessed to work for a company that has this unique culture. They have also supported me to work home based and give me small tasks so I can still add value and feel like I achieve small victories on my better days.
Medical aids also need to be more aware of this for chronic home care etc.
Im from South Africa
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