About CFS

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a devastating illness that destroys millions of American lives, tears families apart and shatters dreams as people are isolated in bedrooms or left homeless with very little medical understanding or societal support.  1-4 million Americans are currently suffering from CFS/ME.  The symptoms are severe and not only is there currently no cure there are no quality treatment options.  Patients range from being forced to work less to being bedridden to being hospitalized hardly able to speak or move.  25% are severely affected and shown in studies to have the lowest functioning of any chronic illness.  It is estimated that only 5% of patients ever reach a full recovery;  The majority suffer for decades and lifetimes.   It costs our nation an estimated 24 billion dollars per year in lost productivity and medical costs as people literally drop off the map.  When someone becomes ill with CFS, we as a nation will likely loose everything that person would have become or contributed. No one hears the stories because the medical world never knew what was wrong, and patients with CFS are too weak to advocate for themselves.  

 

We need research to find a cure and also help making sure patients have the support they need to stay alive.  Programs like disability and medicare are extremely important as thousands of patients have no other means of support.  But still many people are denied disability benefits, and insurance often won't cover badly needed tests to rule out other possible causes.  Many people are subjected to harmful treatments like graded exercise because there simply isn't enough funding to do proper studies.  Most of all, we need funding for research.  There are a lot of ideas and theories that researchers would like to look into but they don't have the funding necessary.  To give you some perspective on how little the illness is funded, HIV receives 25,000$ per patient, per year and CFS receives 1 dollar and 56 cents per patient per year.  That is shockingly little funding for an illness as serious as CFS.  Here are a couple quotes from two doctors who work with both CFS and HIV.

 

My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.
Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.
Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University

If there was a diagnostic test, that alone would pave the way for much additional research, millions of patients would be vindicated from years of severe prejudice and discrimination, insurance companies would be forced to pay for tests and procedures, doctors would have to take the illness seriously and stop subjecting patients to harmful treatments or worse throwing them in mental wards, and patients and healthcare professionals could be coached on how to deal with the symptoms.  When someone gets HIV, they are told what is happening to them, what to expect, what their chances are, what they can do to live a better life and when problems come up, there are doctors who know how to deal with it.  It's estimated that 80-90% of people with CFS never even get diagnosed by the current "elimination" method.  Those that do get diagnosed still have no idea what's happening to them, and most are never given any medical advice whatsoever.  They are left alone and in the dark.

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