Mr. President, Can This Bode Well for M.E.?

NIH names new clinical sites in Undiagnosed Diseases Network

As reported in a recent blog, I subscribe to many newsletters and blogs from different departments in our government.  As a result, I get backlogged with the many emails in my inbox.  Today, I opened an email from the National Institutes of Health, dated July 1st.  Right away, my brain started to buzz with the action of neurons [from Wikipedia:   an electrically excitable cell that processes and transmits information through electrical and chemical signals].  Could this lead to some “buzzable” action that will mean NIH support for M.E.?  It may be farfetched, but my mind grabbed this thought and ran with it.

Another letter to President Obama:

Dear Mr. President;

The National Institutes of Health has awarded grants to six medical centers around the country to select from the most difficult-to-solve medical cases and together develop effective approaches to diagnose them. The clinical sites will conduct clinical evaluation and scientific investigation in cases that involve patients with prolonged undiagnosed conditions.

The network includes and is modeled after an NIH pilot program that has enrolled people with intractable medical conditions from nearly every state, the District of Columbia and seven foreign countries. The network builds on a program at the NIH Clinical Center in Bethesda, Md. that, for the past six years, has evaluated hundreds of patients and provided many diagnoses, often using genomic approaches, for rare conditions.

M.E. (myalgic encephalomyelitis), commonly referred to as CFS (chronic fatigue syndrome), is an officially-undiagnosed (mystery) illness for which there is no diagnostic criteria in the U.S. and has remained a mystery for over 3 decades. I strongly believe that it should be considered to be included by the NIH network.

Undiagnosed, or mystery, diseases are conditions that even skilled physicians cannot diagnose despite extensive clinical investigation. Our medical community knows very little about M.E.:  these symptoms are not part of the curriculum in medical schools; and most have never had patients displaying (presenting) the symptoms of the multi-faceted illness; in fact, many patients suffering from these many symptoms are referred to psychiatrists for evaluations. This is because the primary physicians are totally baffled by the patients’ symptoms, and since the patients “don’t look sick,” they wash their hands of them and “hand” them off to another specialty.

Mr. President, this is serious. Globally, there are at least 20 million sufferers and more than 1 million in the U.S. The people who are so sick have not many corners to look in for relief. As a matter of fact, most suffer from unbearable pain and need pain-reducing medication. These patients are having trouble getting the dosage they require because of a new policy preventing the filling of prescriptions for a dosage that is higher than the usual. These patients are not the “usual” patient. They are being denied the relief they require. They are not addicts and they have no intention of selling it.


Carol Carlson


2 responses to “Mr. President, Can This Bode Well for M.E.?

  1. Another excellent letter!


  2. Really interesting about the NIH. Would it be helpful to write directly to them?


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