Home - What is M.E.?

1 million Americans and 17 million worldwide affected by one of the most disabling diseases ever...

 

Myalgic encephalomyelitis (ME), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport as well as cardiovascular abnormalities. The disease affects people of all ages, genders, races and economic levels.

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, he has been unable to work a job or complete his education. He has been bedridden 23-24 hours a day, not able to read other than a brief occasional message, and conversations are limited. After 3 years, he is now being fed via a nasogastric tube.

He is likely to be permanently disabled unless research finds a cure.

 

Tracey S.

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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 achieve remissions.

However, 13 years 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. At age 37 Tracey was diagnosed and treated for Non-Hodgkins Lymphoma (ME patients have an increased risk of cancer).

In all, Tracey has been sick with ME for 29 years. She is homebound and 80-90% bedridden, and has difficulty with self care.

Common misconceptions of the disease

It Is Not Typical Fatigue

The main misconception is that it is similar to the kind of fatigue that normal people feel and that getting proper sleep, eating right, and exercise will cure it.

It Is Not Laziness

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

ME Is A Serious Neuroimmune Disease

The truth is these people have a very serious neurological disease which impacts the body’s energy production system at the cellular level via dysregulation of the immune and nervous systems --- they need to pace themselves and rest or they will get worse (possibly much worse). You can’t exercise your way out of this disease. It is not uncommon to hear of people who went from being able to work to being permanently bedridden because they tried to push through their symptoms.

Frequently Asked Questions

What is chronic fatigue syndrome (CFS)?

Although ME is recognized as a neuroimmune disease around the world, in the US, governmental health agencies redefined ME as “chronic fatigue syndrome” (CFS). CFS is a political and social construct consisting of a fatiguing psychological illness which purportedly can be resolved with cognitive behavioral therapy (CBT) and graded exercise therapy (GET). This was done to satisfy various lobbies such as psychiatrists and insurance companies. In other words, it’s not based in science.

Since ME has currently not been officially recognized or widely known in the US, it is very hard to get an ME diagnosis. The best medical diagnosis that a patient can expect will likely be CFS or fibromyalgia, while in reality, approximately 50% of these patients actually have ME. Treatments recommended for CFS or fibromyalgia, such as graded exercise, are not beneficial or advised for ME patients. This problem has been the cause of much suffering for ME patients.

Is ME same as CFS?

No - patients who fit the criteria for ME also fit the criteria for CFS. But patients who fit the overly broad criteria for CFS may not fit the criteria for ME.

Why is ME not getting attention?

Neglect

Again this is complicated, but due to the government's institutional bias against the disease, ME has been mishandled and not taken seriously. They renamed the disease a very trivializing name "chronic fatigue syndrome", and have created a series of very loose definitions, misdiagnosing people who actually have depression, multiple sclerosis or other diseases with overlapping symptoms. This makes progress with research difficult because they are studying several diseases, not "the" disease.

Rebranding

The recently proposed new name and definition, “systemic exertion intolerance disease”, is basically deja vu all over again. A recent study by Leonard Jason has shown that the proposed name and definition is almost 3 times looser than the existing 1994 CFS definition, and not nearly as good as already existing definitions created by ME disease experts. The government refuses to adopt these other definitions (for example, the Canadian Consensus Criteria, already in use in Canada).

Lack of Funding

In addition, the federal research budget has been a paltry $5 million per year for the last 25 years, which is at the bottom of the list of diseases. The disease needs to be funded at $250 million annually to get on par with similar diseases.

Why is it so important that ME gets attention?

Extremely Poor Quality of Life

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

The disease affects about 1 million Americans and 17 million worldwide - two to three times the rate of multiple sclerosis. There are no FDA approved treatments, no cause and no cure. It's very hard to get diagnosed - it's typical to have to go to many doctors before you can get a diagnosis. Most patients (85%) remain undiagnosed. About the best that can be done is to rest aggressively and try to relieve the symptoms. 25% of patients are extremely disabled - homebound or bedridden.

It's very rare for anyone to have a full recovery. For some, "partial remission" occurs, but relapses frequently undo any improvement. This disease is basically a life sentence - people get sick young - as young as teenagers, and stay that way for the rest of their lives.

Hope

It doesn't have to be this way - for example, there are small trials of existing FDA approved drugs such as antivirals and immune modulators which are very helpful for some people. More research needs to be done as to which subsets can be helped by these drugs, and then get the drugs approved for use in this disease.

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  • Latest from the blog

    Severe ME Day 8th August, 2018: Understanding & Awareness

     

    ME Person in a Frame, Artwork by Greg CrowhurstArtwork by Stonebird - raising awareness of Severe/Very Severe ME

    “In my experience (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.” ( Daniel L. Peterson, M.D.) 

    UPDATED AUGUST 2018 from the original MEadvocacy 2015 Severe ME Day Blog

    Myalgic Encephalomyelitis (ME) is a chronic, often severely disabling disease, that affects the autonomic nervous system, immune system, endocrine system, among others. It afflicts over one million people in the United States alone and as many as 17 million worldwide.  ME is a disease that robs individuals of their health, similar to untreated HIV. There are those that refer to ME as non-HIV AIDS - with good cause, as the disease can leave sufferers confined to a bed, with little capacity to fend for themselves.

    What many might not know is that one out of four people with ME (PWME) over time become so ill as to not only be disabled, and not just housebound, but completely bedridden. These patients struggle to do what most take for granted like brushing one's hair without gasping for air, feeding themselves, or getting to the bathroom unassisted. For them, life is reduced to survival, with the 4 walls of their bedroom becoming their prison, and the outside world a faded distant memory.
     

    Chances are that many people have met someone that has gone on to develop ME, and they don't even know it because those with Severe ME end up disappearing into darkened rooms and rarely seen. 

    August 8th was a day dedicated day to raise awareness of the plight of the severely affected ME patients. 

    Research has shown that ME/CFS has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodialysis.” - (Prof. Malcolm Hooper and Eileen Marshall)   

    Most researchers agree ME manifests in three categories: Mild, Moderate and Severe. To date there is no cure and no meaningful universally effective treatments. For many of the sick undone by Severe ME, there is little more to look forward than darkened and hushed rooms (due to light and sound sensitivities), and incapacitating weakness, absolute exhaustion, and far too often, unrelenting pain. 

    Severe ME for loved ones, means… 

    ...they need help with personal care

    ...cannot walk and even turning over in bed is painful

    ...unable to cut their own food, even a banana

    ...many are forced to use BOTH hands to lift a small plastic drinking glass

    ...daily water rationing for many because they lack the strength to walk the 10 steps to the bathroom

    ...being too weak to brush their hair or teeth

    ...requiring dark towels be taped over the black-out curtains in their bedroom, because the stimulation of even a few pinpricks of light can prove agonizing

    ...speech reduced to whispering, if sufferers can muster the strength to speak at all

    ...being tube fed. For many Severe ME patients, the ability to feed themselves eventually slips away.

    Plight

    The plight of these severe patients has been misunderstood, trivialized and even disbelieved. They suffer in silence, in darkened rooms because their hyper-sensitivities to light, sound and touch make it impossible for them to lead a normal life.  Severe ME patients are seldom seen by a doctor because they cannot travel to a doctor’s office. Consequently, they have not taken part in studies and their unique symptoms have been missed or ignored in the medical literature for the disease. 

    Some of these symptoms include seizures, paralysis, intractable pain, blackouts, coma-like experiences, incontinence, tremors, cardiac dysfunction, dyscalculia, and dysphasia.  By neglecting these severest patients, the medical community - and especially government health agencies - have done a great disservice to ME patients. 

    This neglect has arguably compromised the ability of government health agencies  to develop proper disease criteria.  It is hard to imagine any other illness having their severest patients omitted from research studies, criteria development, and even choosing a name for the disease! 

    “Our (ME/CFS) patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society” (Nancy Klimas, M.D.) 

    Medical Abuse 

    To bring awareness to Severe ME, August 8th was selected because it was Sophia Mirza’s birth date. Sophia died in 2005 from Severe Myalgic Encephalomyelitis at the young age of 32, many feel as a result of medical abuse and ignorance. Shockingly 13 years later, this medical abuse is still going on even today.  This date was chosen in remembrance of Sophia and all those whose lives were shortened because of ME. 

    The devastating symptoms of these Severe ME patients still are not understood by many in the medical profession. The result for many Severe ME sufferers has been catastrophic. Due to medical and societal ignorance, ME patients have been inappropriately “sectioned” as mental patients against their will, despite suffering no mental illness. Children and young adults with ME have been forcibly taken from their parents and denied proper medical care as per ME expert clinicians. 

    Medical education about the true nature of this disease is the only way forward to make sure the atrocious abuse of these severely ill patients stops.

    Hope

    Awareness of the severity of ME is growing and the need to include the severe patients in current studies has been acknowledged. 

    Sue Dremann wrote an article in the Palo Alto Weekly:"Living on Empty: Chronic Fatigue Syndrome Saps its Victims But New Research May Find the CauseIt features three ME sufferers, with a focus on a very severely affected patient, Whitney Dafoe, the son of Dr. Ron Davis. 

    The End ME/CFS project of the Open Medicine Foundation has started an “ME/CFS Severely Ill, Big Data Study”.  This study will conduct a comprehensive, “Big Data” analysis on severely ill patients with the goal of finding sensitive and distinctive molecular biomarker(s). 

    The geneticist, Dr. Ron Davis of the Chronic Fatigue Syndrome Research Center (CFSRC) at Stanford, has recruited Nobel laureates James D. Watson, PhD and Mario R. Capecchi, PhD among others as advisors to create what he envisions as a collaborative ME/CFS research effort akin to the Human Genome Project. Dr. Davis started the the Open Medicine Foundation's ME/CFS Severely Ill Big Data Study (May 2018 Progress Update). Currently, there is no other severe patient research study being performed in the US. This is the first and only one.

    What You Can Do 

    • A July 2018 change.org petition has just been posted demanding US government adopt the International Consensus Criteria (ICC) for diagnosing, research and treatment of ME patients. As US health policy affects everyone around the world, everyone around the world is urged to sign. United we can make a difference. Hashtag for this petition is #PwME4ICC (People with ME for ICC).

    • Donate here for the Open Medicine Foundation's ME/CFS Severely Ill Big Data Study 

     

    Links and Resources

    Other Severe ME links…

     

    Come join the thousands of MEadvocacy members to raise awareness for severe ME all year long - JOIN (free membership)

    Please use #SevereME on twitter for this special day

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