What We Know So Far About Chronic Fatigue Syndrome

There are almost 2.5 million Americans with Chronic Fatigue Syndrome (CFS), medically known as myalgic encephalomyelitis (ME) that robs people of a full life. Many are bed-ridden and unable to care for themselves, living in a ‘one room world’ because they are unable to get out and are often very sensitive to fragrances and sound.

This complicated illness has been a mystery to the medical community and highly misunderstood for years. As a result, there have been very little resources devoted to understanding the illness on a molecular level, and only 18 percent of people with CFS/ME recover.

Fortunately, I am one of those few who recovered. And I’m relieved to see, with recent developments, it is now being taken seriously.

There Is Proof That Chronic Fatigue Syndrome Is Real!

  1. CFS has been found by research to be a physical illness with its origins as an infection.  For many CFS/ME people, it starts with a viral cold or flu that doesn’t go away. Sleep does not make them feel rested, and it can last for months or in most cases several years. Often patients have been told by their doctor to see a psychologist. “We now have evidence confirming what millions of people with this disease already know, that ME/CFS isn’t psychological.”  Dr. Mady Hornig, Center for Infection and Immunity.
  1. Stanford study found brain abnormalities in chronic fatigue patients.  Radiology researchers found that the brains of patients with CFS have reduced white matter and also white matter abnormalities in the right side of the brain. “Using a trio of sophisticated imaging methodologies, we found that CFS patients’ brains diverge from those of healthy subjects in at least three distinct ways,” said lead author Michael Zeineh, MD, PhD, assistant professor of radiology.

What is it like to have CFS/ME?

Those with CFS live in extreme fatigue all the time. Feeling tired does not go away, even after resting; it creates a very restricting lifestyle.

According to U.S. National Library of Medicine, someone with CFS will have at least four of these other symptoms: Feeling unwell for more than 24 hours after physical activity, muscle pain, memory problems, headaches, multiple joint pain, sleep problems, sore throat and tender lymph nodes.

There are no tests for diagnosing CFS, and doctors do not have a successful cure for it. All they can do is treat symptoms with medicine for pain, sleep disorders, etc.

CFSDianaHerringtonSpring96

In 1984, I began to feel constantly fatigued right after having an acute flu. My doctor assured me he could find nothing wrong with me, so I continued to limp along, pushing myself to run my successful crystal gift business. This actually made my health much worse. The best any of the doctors I went to could do was to subscribe pain killers and/or sleeping pills which I would not take as I wanted to know what was truly wrong.

Massive neglect of funding for CFS research:

“The level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure and chronic obstructive pulmonary disease,” said William Reeves, a former chief of the Viral Diseases Branch of the Center for Disease Control (CDC) in a 2006 press conference.

The National Institutes of Health spent almost $2,500 per person to find a cure for the 1.2 million Americans living with AIDS; they spent less than $5 per person for the almost 2.5 million Americans living with ME/CFS.

Consistently CFS is one of the lowest NIH-funded diseases. See this list of submitted clinical trials; not one is moving forward.

Two grant proposals in March, 2015 were submitted by Ronald W. Davis, PhD to the NIH for funding to study patients severely affected by ME/CFS. The applications were not able to move past the NIH’s pre-proposal stage. He has a son with severe ME/CFS that is unable to walk, talk or eat, thus he is on a mission to make sure research happens.

Watch this video on how they are working to end MS/CFS:

Why I Wrote This Article

I had CFS for 17 years and was disabled with severe CFS/Fibromyalgia for 9 years—living in my pajamas.  I could hardly walk from one room to the other and because my arms hurt so much, I was unable to drive. I truly learned what it was like to be disabled. Fortunately, I recovered 15 years ago and have never relapsed. I am well, fully alive and dancing in life.

To learn more about my story, read My Chronic Fatigue/Fibromyalgia Story.

98 comments

Peggy B
Peggy Babout a year ago

TYFS

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Siyus Copetallus
Siyus Copetallus3 years ago

Thank you for sharing.

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angela u.
angela U3 years ago

Thank you so much for this article - my daughter is so ill with ME/FMS/MCS/ diabetes/depression/anxiety it's just an awful domino effect. But we must Never, Ever, Ever give up hope!

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Phoebe B.
Phoebe B3 years ago

Along with fatigue, the cardinal primary symptom of ME/CFS is Post-Exertional Malaise (PEM), a severe whole-system physical & mental collapse following aerobic exercise, which bears no resemblance to the normal tiredness experienced by healthy people after exertion.

While aerobic exercise & vigorous activity improve normal healthy people, these things severely worsen people who have ME/CFS.

It is crucial to understand this, because ME/CFS patients can manage this chronic illness by being aware of their own unique energy envelope and staying within it to avoid a crash.

The 2015 Institute of Medicine report debunks myths and offers accurate information for diagnosis & treatment: http://nationalacademies.org/HMD/Reports/2015/ME-CFS.aspx

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Quanta Kiran
Quanta Kiran3 years ago

noted

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Elizabeth Brawn
Elizabeth Brawn3 years ago

i miss my friend Lyn

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Isabel G.
Isabel G3 years ago

thank you. information is the key.

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Jim Ven
Jim Ven3 years ago

thanks for the article.

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Iskrica Knežzevic

Thank you!

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Carole R.
Carole R3 years ago

Good information. Thanks.

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