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The World’s Most Important Man for the Future of ME/CFS

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By Rich Carson, ProHealth Founder

2015 became a stunning year for Chronic Fatigue Syndrome/ME* patients when the most powerful man in the medicine, Dr. Francis Collins, director of the National Institutes of Health, publicly committed the NIH to solving the mystery of this devastating, far-reaching disease. The news was delivered on the Charlie Rose PBS television show when Dr. Collins was asked about “Chronic Fatigue.” (See video below.)

It is the best news in the history of ME/CFS––a dream to millions of patients who have suffered for so long with one of the world’s most devastating diseases. Until now, the US government response to ME/CFS has been to essentially ignore it.My estimate is that target annual funding for ME will eventually increase ten to twenty times from the paltry $5-6 million, mere chump change, that it has received forever. That’s a 1,000 to 2,000% increase that will likely send annual funding to $60-120 million.

AIDS has just a few more patients, but receives $3 billion/year from the NIH. That’s close to 50,000% more per patient. Yet the cost to the US economy caused by ME/CFS is enormous, estimated to be between $15 to $35 bill per year, mostly from lost income taxes – over 50% of patients are disabled and do not pay taxes – and from medical care including Medicare and Social Security disability insurance. AIDS patients aren’t nearly as disabled.

Director Collins states that he wants to bring the vast resources of the NIH to bear on the disease, telling listeners that the he will use the most sophisticated technologies to find out what’s really going on with patients. Dr. Collins exudes commitment and confidence while making the announcement, and I think patients can expect to see the NIH increase ME/CFS research funding within months.

It’s breathtaking to know that the NIH is finally coming to the rescue of ME patients – the best news I have ever seen! We have waited so long.

* The $1 million government-funded 2014 study by the Institute of Medicine, recommended that the name ‘Chronic Fatigue Syndrome’ be changed because it is inappropriate. This is a good time for push the NIH to change the name to Myalgic Encephalomyelitis.

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