Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (MECFS)

Wondering what Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis and/or MECFS) is? Here are a few links that provide some very thorough information. The first link is the Centers for Disease Control and Prevention (CDC), the second is a care center here in the United States Bateman Horne Center, and the last link leads to a collaboration of researchers globally, many at prestigious universities Open Medicine Foundation. While we all have a core commonality of a few symptoms, the rest of the symptoms vary from person to person. It can range from being fatal, to being subtle, and it’s not especially choosy in who it picks, it’s anyone from children to adults, only showing a bias toward females, but men get it too.

Researchers globally are trying to determine the cause, what exactly it’s doing to the body, and what exactly will cure it.  Because of all the unknowns there is currently no test to confirm this illness, nor is there an FDA approved treatment.  You can’t go to the Dr and get a CFS test, you must wait months for them to rule everything else out, and then they may, or may not, diagnose you with CFS. Meanwhile, your life as you knew it, is likely falling down around you. And yes, did I mention, there is no cure, no tried and true, across-the-board treatment, just millions of us watching our lives pass us by waiting for answers, searching for answers (many of us deserve degrees for the amount of researching we’ve done).  Maybe that sounds dramatic to you, before I had this illness I perhaps would have thought it did but now, now it’s my reality, and honestly, it’s gut wrenching.  I don’t have cancer, or HIV, or depression…there are treatments for those illnesses, people understand when you tell them you have one of those illness, and for the most part they are compassionate.  With this one people mostly reply, “I get tired too.” And that breaks our hearts.  This isn’t ‘tired’, it’s like gravity is pulling you down, it’s like you are drowning, it’s like you can’t move, it’s like your body has given up.  You feel like you are dying and sometimes are shocked when you actually wake up the next day.  And I won’t delve too deeply into the pain, suffice to say it’s always….ALWAYS present.  Your days are categorized into either high pain days and low pain days. The only saving grace (for me) is that it moves around your body, which gives you a break from where it previously hurt.  Has a doctor ever asked if your pain is shooting or throbbing or dull, yes, for many of us with MECFS it’s all of those. We are some of the strongest people you know because nearly everyday we smile through the pain, why? Because we have a choice each day, we can smile or cry. Might as well smile.

Just in case you know someone with CFS, and have wondered if it’s a real thing or you have it yourself and the doctors have told you it’s not a real thing (personal experience) here are a ridiculous amount of links from recent research (updated as I find more recent information, most recent on top) and blog posts indicating that yes, indeed, it is a real thing:

ME/CFS Research Roundup: Brief highlights of biomedical research to date, October 2017

Scientists find signature of Chronic Fatigue Syndrome in blood which suggests disease is the body going into hibernation, August 2016

Mitochondrial Dysfunction and Chronic Fatigue Syndrome

End ME/CFS Severe Patient Study Turns to the Mitochondria, March 2016

An Update on ME/CFS Research with Dr. Ronald W. Davis, February 2017 (video) –

Impaired calcium mobilization in natural killer cells from chronic fatigue syndrome/myalgic encephalomyelitis patients is associated with transient receptor potential melastatin 3 ion channels, November 2016 –

Metabolic switch may bring on chronic fatigue syndrome, February 2017

Gold Coast researchers make chronic fatigue breakthrough, February 2017 –

Breakthrough found in chronic illness affecting 250,000 Aussies, February 2017 –

Treating Chronic Fatigue Syndrome: The IACFS/ME Conference Overviews Part V, February 2017 –

Major Breakthrough in Chronic Fatigue Syndrome (ME/CFS)? Aussies Believe Biomarker Found, March 2017

Calcium channel ion defects: research from Australia’s Griffith Uni., March 2017 –

Getting It Wrong on Chronic Fatigue Syndrome, March 2017 –

Breakthrough Research Finds CFS is An Immune Condition, May 2017 –

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