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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.

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, 10 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 semi-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 26 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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    "An idea is always a generalization, and generalization is a property of thinking. 
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    ~ Georg Wilhelm Friedrich Hegel

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    https://docs.google.com/document/d/1y_SoLHW8NaxBrI8bmBiY-ehBZfd3Ji7yttV50bG5qRY/mobilebasic?pli=1).

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    Eileen Holderman CFSAC Public Comment About NIH Study

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    CFSAC

    Public Comment

    May 18, 2016

    Eileen Holderman

     

    Good afternoon to the Advisory Committee Members and to all stakeholders listening. 

    My name is Eileen Holderman - I'm an advocate for ME, GWI and other neuroimmune diseases. 

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    Easy Way to Create May Awareness

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    May Awareness

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