How the U. S. Government is Abusing M.E. Patient Rights

Anyone who has been following blogs and tweets that highlight the plight of M.E. (myalgic encephalomyelitis) sufferers will know how desperate this fight is.

Myalgic Encephalomyelitis Awareness Blue Ribbon

Myalgic Encephalomyelitis Awareness Blue Ribbon

The US government through the Health and Human Services Department (HHS) and NIH (National Institute of Health) is doing all it can to push down and stop the fight for proper recognition of M.E. as a neurological, not a psychological, chronic illness.

Please watch this video courtesy of Jeannette Burmeister, to view experts, patients, and advocates addressing the IOM (Institute of Medicine) at its first public hearing (it isn’t a long video, but brings out the important highlights).  The IOM has been charged, by the HHS, and with the approval of the NIH, to come up with a diagnosis criteria.  (BTW, it has been suggested that the IOM might even change the name of the disease to “Chronic Multi-symptom Illness,” like they did with the Gulf War Syndrome – what a fiasco for the veterans that was!)

The HHS contracted secretly with the IOM at a cost of taxpayers’ money of $1 million, to convene a panel of experts and non-experts of this disease (non-experts outweigh experts on this panel), to “work” on the criteria.  This is being terribly mishandled by our government, in the face of medical experts, patients, researchers, and advocates, who say “adopt the CCC” (Canadian Consensus Criteria).  Money is the underlying reason why M.E. sufferers are faring so poorly in more ways than one.  Insurance companies don’t want to pay for all the expensive tests that are required to establish diagnoses.

The CCC has been accepted by many countries around the world as their criteria for diagnosing M.E., and it would give verification and acceptance for the more than 1 million M.E. patients in the U.S. (the same number as HIV/AIDS patients) who are suffering with this debilitating disease.

Please do what you can to forward the advocacy for these patients who, for the most part, have lost their lives (literally) and those who have seen their former rich, qualitative, productive lives taken away by this debilitating illness.

And, what is the ray of sunshine in all of this?  We have hope.  Without hope, all is lost.

 

sunshine

Images taken from bing dot com

 

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