by Maryann Spurgin Ph.D.
Most patients are in total agreement that we want myalgic encephalomyelitis as a primary subset under the umbrella term, whatever we decide about the other subsets. Today I want to concentrate on the umbrella term under which ME will be placed.
We need an umbrella term with subsets. Why? Because previously, the term “CFS” was used by scientists too loosely, and many diverse, sometimes unrelated diseases (everything from depression to viral cardiomyopathy) were published on with the name “CFS” in the title of the article. We do not want many diverse diseases to be researched under ME. We want ME researched separately, and other diseases such as idiopathic chronic fatigue, etc., to be researched separately. The solution is an umbrella term with subsets, and each subset will have separate research criteria.
In my opinion, however, we should strongly oppose the umbrella term chosen by the name change workgroup, and choose the term Neudoendocrine Immune Syndrome instead.
Why “Neudoendocine Immune Syndrome” ?
Most patients will also agree that the medical terms “neuro,” “endocrine” and “immune” are a fair and accurate portrayal of the types of symptoms, which correlate with the volumes of scientific publications occurring, in this syndrome. These are multi-system diseases affecting many organs and tissues of the body. Serious neurological problems, including mitochondrial disease, as well as endocrinological problems such as low plasma and erythrocyte volume, as well as immune abberations have been found.
The controversy, then, surrounds the terms “chronic” and “dysfunction.” Unfortunately, “Chronic Neuroendocrineimmune Dysfunction Syndrome” is a perfectly hideous, long, cumbersome, verbose and ineloquent term. It contains a lot of words that say nothing. With six words, it is entirely too long.
It will never go in a headline, or if it does it will be ridiculed as “chronic dysfunction syndrome.” It is also too close to “CFIDS,” a term that we all want to dispose of. CNDS contains three common words, “chronic,” “dysfunction,” and “syndrome” with the lame, pathetic, “CFIDS” term. Further, it is inaccurate, since some cases are progressive or degenerative, not chronic.
We suffer from a serious disease. Again, “Chronic Neuroendocrineimmune Dysfunction Syndrome” does not represent that seriousness. No one puts “chronic” in front of Acquired Immune Deficiency Syndrome, Lupus, Multiple Sclerosis etc., and to do so would weaken those disease names and make them sound less serious. Let us not fall into their trap.
As Hillary Johnson pointed out years ago, the term “chronic” turns doctors away, causes medical journals to shun publicationing on a disease, and hints at “chronic whiny women.” “Dysfunction” is no better, and might lead to an interpretaion of “that chronic dysfunctional family of illnesses.” The term is a disaster.
Rightly so, patients have already strongly rejected the term “Neuro Endocrine Immune Dysfunction Syndrome” because of the demeaning acronym “NEIDS.”
There is one simple, neat, clean solution, to this mess and controversy. We should delete the terms “chronic” and “dysfunction” and use the simple, concise, elegant umbrella term “Neuroendocrine Immune syndrome” (NS or NIS).
I believe that because this term is more concise and elegant, it will have greater influence with the medical and research community, and serve as a
better umbrella term under which to place ME and other subsets. I hope
patients will adopt and fight for Neuroendocrine Immune Syndrome and
choose the acronym they prefer, whether NS or NIS.