What is ME?

Myalgic encephalomyelitis is a neurological and immunological disease (with an infectious component and/or etiology) appearing in epidemic and sporadic forms. The illness typically has an acute onset of a viral or bacterial infection or toxin/chemical exposure.  

The disease strikes about one million American men, women and children and about 17 million worldwide. Most patients are disabled and cannot work and about 25% are bedbound and cannot care for themselves. 

The symptoms of ME are numerous and can include but are not limited to the following:  (please see IC Primer for full list)

The key feature of ME is a post-exertional exacerbation of symptoms including immune dysfunction and cognitive impairment.

NEUROLOGICAL

  • difficulty processing information, aphasia, short term memory loss, etc.
  • significant muscle and joint pain
  • headaches/migraines
  • sleep dysfunction, unrefreshing sleep
  • extreme muscle fatiguability, poor coordination, weakness (including paralysis)
  • vertigo, sensitivity to light, sound, noise, vibrations, and impaired depth perception

IMMUNE, GASTRO-INTESTINAL & GENITOURINARY IMPAIRMENTS

  • profound immune dysfunction (reactivated viruses and opportunistic infections)
  • nausea and bloating
  • urinary frequency
  • sensitivities to food, medications, molds, odors or chemicals

ENERGY METABOLISM AND ION TRANSPORT IMPAIRMENTS

  • orthostatic intolerance and vertigo
  • air hunger, labored breathing, fatigue of chest wall muscles
  • subnormal body temperature, chills, low-grade fever, cold extremities
  • cardiovascular abnormalities including low blood volume and orthostatic intolerance

Patients with ME need to be screened for infectious agents including viruses and bacteria often associated with ME that are reactivated or opportunistic infections that develop due to an impaired immune system.

The International Classification of Diseases (ICD) code for ME is G93.3 under diseases of the nervous system – other disorders of the brain.

Patients with ME must remain inside a safe activity window to prevent exacerbation of symptoms and deterioration of baseline functionality. Graded exercise or pushing to gradually increase activity is dangerous and medical professionals should encourage patients to rest as much as necessary to avoid post-exertional neuroimmune exhaustion (PENE).

 

HOW TO PRONOUNCE ME

Myalgic Encephalomyelitis --  Learner's Dictionary Audio Pronunciation of ME

 

SEVERE ME

Severe ME patients are suffering from a harsh, disabling form of myalgic encephalomyelitis. These patients are isolated due to the severity of their symptoms and are often unable to leave their home even to seek medical care.



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Graphic by Greg Crowhurst http://www.stonebird.co.uk/

 

IS IT LIKELY I HAVE ME?

If you have been diagnosed with CFS, ME/CFS, Fibromyalgia, Chronic Lyme or other immune dysfunction diseases, it is important to be evaluated for ME. Finding a qualified expert to definitively diagnose myalgic encephalomyelitis is difficult. Most doctors have not been educated on diagnosing ME using the International Consensus Primer (ME-ICC).

MEadvocacy has an easy to use questionnaire on the resources page that can help patients and doctors have more confidence in identifying a suspected ME diagnosis. Then doctors can follow the International Consensus Primer (IC Primer) to definitively diagnose myalgic encephalomyelitis and pursue symptom treatments to help improve quality of life. A link to the IC Primer is also provided on MEadvocacy’s resource page.

 

WHO GETS ME?

Anyone can get ME.

The disease affects people of all ages, genders, races and economic levels.

It is estimated that 1 million Americans and 17 million men, women and children are affected worldwide by ME - one of the most disabling diseases ever.

 

STORIES

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Tom developed severe ME following a viral illness in January of 2014. A sophomore at Stanford, Tom was a 4.0 computer science student with a dream research elective and summer job offers at Facebook and Dropbox.

Due to his severe illness, Tom has been unable to work a job or complete his education. Since 2017, Tom’s condition has worsened to the point that he has required tube feeding. The disease has since progressed where Tom has become very severe and is mainly paralyzed with no movement of body, head or legs.  
 

He is likely to be permanently disabled unless research finds a cure or robust effective treatments.

 

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Tracey S.

Tracey suddenly became sick in 1989 at age 15 with a triple hit of a stomach virus, pneumonia, and mononucleosis. Though the infections cleared, she remained severely ill and housebound. She gradually improved over 5 years - while not completely healthy, she became functional enough to complete a college degree, work full time, and get married.

Then, viral infections and an adverse vaccine reaction set off a series of relapses over the next several years. She made drastic lifestyle changes to allow time to rest, and this was helpful to gain improved function. However, over a decade ago a progressive decline began, and she became completely disabled and no longer able to work. Her parents moved nearby so her mother (now retired) could take care of Tracey and her children while her husband is at work. At age 37 Tracey was diagnosed and treated for Non-Hodgkin's Lymphoma (ME patients have an increased risk of cancer). In all, Tracey has been sick with ME for over 30 years. She is mostly homebound, 80-90% bedridden and has difficulty with self-care.

 

Common Misconceptions of Myalgic Encephalomyelitis

 

“It Is Typical Fatigue”

The main misconception is that the inability to perform daily tasks is due to the kind of fatigue that normal people feel and that getting proper sleep, eating right, and exercising will cure it. This is not true. Fatigue is an inaccurate term to use for those who have myalgic encephalomyelitis.

“It Is Not An Acquired Disease, Only Bad Choices”

Another misconception is that if people don't get well, it's their own fault for feeling sick and not trying hard enough. Or that, at one point, people were sick with some virus but now they are well but are just afraid to exercise - so antidepressants and talk therapy will cure them.

You can’t exercise your way out of myalgic encephalomyelitis. It is common to hear of people who went from being able to work to being homebound/bedridden because they too often tried to push through their symptoms. ME is an acquired disease.

 

FAQs: Frequently Asked Questions

 

What is chronic fatigue syndrome (CFS)?

Although ME was recognized as a neuroimmune disease around the world since 1955, after a 1980s ME epidemic that occurred in Lake Tahoe Nevada, US government health agencies started using the label CFS. Subsequently, many patients who only exhibited unexplained fatigue were lumped in with ME patients. The disease known as CFS, as described by the vague criteria known as Fukuda, was promoted as the only diagnostic criteria to the US medical practitioners with no FDA approved treatments.


The US ICD-10-CM code for CFS is R53.82 under symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified.

 

What is SEID (ME/CFS-SEID)

Systemic Exertion Intolerance Disease based on IOM report

In 2015, the US government commissioned a report from the Institute of Medicine (IOM: since renamed National Academy of Medicine NAM) to redefine CFS and ME. The report resulted in a definition based mainly on CFS studies, leaving out much of what is known about ME as defined by the ICC.

The report titled “Beyond ME/CFS” led to a new definition known as the “IOM Report” or systemic exertion intolerance disease (SEID). Currently, US health agencies are promoting the IOM definition and have begun the process to use the term SEID. They also apply the SEID definition to the ME/CFS term. MEadvocacy refers to this as ME/CFS-SEID.

A study by Leonard Jason has shown that ME/CFS-SEID is almost 3 times broader than the existing 1994 CFS Case Definition (aka Fukuda criteria). ME/CFS-SEID clearly does not define the distinct disease ME.

As of 2019, there are no US or International diagnostic codes for SEID or ME/CFS-SEID.

 

Is ME-ICC same as CFS or ME/CFS-SEID?

NO - patients who fit the criteria for ME may also fit the criteria for CFS (CFS-Holmes and CFS-Fukuda) and ME/CFS-SEID but the definitions are not synonymous nor interchangeable.

MEadvocacy uses the term CFS-Fukuda to represent those diagnosed in the United States with CFS since 1994 using the Fukuda criteria. CFS-Holmes are those diagnosed as CFS in the United States from 1980s -1994. But patients who fit these overly broad criteria may not fit the criteria for ME-ICC.

Note: Chart comparing ME-ICC to ME/CFS-SEID can be found on our resource page.

For more information about the different criteria see MEadvocacy blog “Analysis of CFSAC August 2015 Recommendations for the IOM Criteria”.

 

Why is ME not getting appropriate attention?

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Neglect

This is complicated. To simplify, ME has been mishandled and not taken seriously due to the U.S. government health agencies' institutional bias against the disease, influence by private insurance companies, and government healthcare. The US government has not properly researched the original 1984 Lake Tahoe epidemic patients, has adopted an inappropriate and trivializing term "chronic fatigue syndrome", and has created a series of vague definitions which resulted in misdiagnosing people who actually suffer from other conditions with overlapping symptoms or idiopathic fatigue. This strangles progress with research and skews medical practitioners experience because they are observing and studying a group which includes misdiagnosed patients, not myalgic encephalomyelitis.


Lack of Funding

ME-ICC needs to be funded to at least $250 million annually to be on par with similar diseases (and not waste money funding studies which do not use ME-ICC for cohort selection).

ME-ICC does not have a line item for research at the NIH. The federal research budget for CFS, which may or may not include ME-ICC patients, has been between $4 and $16 million since 2008. CFS is one of the least funded diseases out of the entire NIH funding list. ME research is not guaranteed any portion of the CFS budget and is rarely allocated a small portion. In 2019, Severe ME research is non-existent in the US except for one small privately funded study taking place at Open Medicine Foundation. This is directly due to the CDC and NIH refusing to adopt and promote ME-ICC diagnosis.

 

Why is it so important that ME gets attention?

 

Extremely Poor Quality of Life

A 2015 study by Michael Falk Hvidberg has shown that someone with myalgic encephalomyelitis has the worst quality of life out of 20 major diseases - even worse than multiple sclerosis and stroke.

The disease affects patients at two to three times the rate of multiple sclerosis. There are no FDA approved treatments, no known cause, and no cure. It’s typical to visit many doctors before getting a diagnosis and finding a medical professional who can offer treatments to improve quality of life.

Many who have ME as described by the ICC are misdiagnosed with other diseases or remain undiagnosed. 25% of patients are extremely disabled - homebound or bedridden. There are tens of thousands of severe-ME patients around the world who require feeding tubes and around the clock caregivers.

It's very rare for anyone to have a full recovery. For some, function returns to a higher level but relapses frequently, but relapses frequently undo any improvement. This disease is basically a life sentence. People can get sick as children and require ongoing care to manage daily living for the rest of their lives.

Inappropriate Disability Judgments

Most patients apply for disability. People with ME struggle to get disability due to the lack of understanding about the disease and patients receive inadequate support services. The cost of having ME is high as patients require caregivers and other support services that are not often recognized because of the mischaracterization of the illness as being transient and manageable with pacing.

The Social Security administration ruling for evaluating Chronic Fatigue Syndrome includes this statement:  “In 2003, an expert subcommittee of Health Canada, the Canadian health agency, convened a consensus workshop that developed a clinical case definition for CFS, known as the Canadian Consensus Criteria (CCC).[3] In 2011, a private international group developed guidelines, known as the International Consensus Criteria (ICC),[4] for diagnosing myalgic encephalomyelitis (ME).[5]

Disability judgment statements such as “medical improvement is expected with appropriate treatment” should never be given. There are no proven medical treatments that bring improvement, only inadequate symptom management. Proper education about ME-ICC will ensure patients are no longer given these inappropriate disability judgments.

HOPE

It doesn't have to be this way. The ME IC Primer can guide doctors to test for diseases that should be ruled out and for co-existing diseases that can be treated.

Government health agencies should adopt the ME-ICC paving the way for patients to be properly diagnosed and researched. Recognition and adoption of the proper diagnostic and research criteria for ME (ICC), will lead to proper medical care and successful study outcomes which will lead to acceptable biomarkers and FDA approved treatments.

To improve the quality of life for all patients, the CDC needs to update their website to specify myalgic encephalomyelitis as a distinct disease including the IC Primer materials to enable medical professionals to properly diagnose and study ME. The CDC website should specify the use of the US ICD-10-CM diagnostic code G93.3 for ME for medical coding and list appropriate testing and symptom treatments mentioned in the IC Primer.

CDC should create, promote, and disseminate medical educational information about ME as per the ICC to medical providers nationwide.

Trials of existing FDA approved drugs such as antivirals and immune modulators, which are very helpful for some ME patients, should be accelerated and approved.

There is a lot of hope if the leadership of our health agencies will recognize and support ME-ICC.

 

What Can I Do to Help?

  • Learn about ME-ICC and share that knowledge with family, friends and medical professionals
  • Follow our blogs for in-depth evaluations, news, and actions to take
  • Read our past blogs to learn the political history behind ME and CFS
  • Join our website and email list for more information and actions you can take to help

 

  

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