IOM Statement from Dr. Maryann Spurgin, Myalgic Encephalomyelitis Society of America
Following is the comment written by Dr. Maryann Spurgin of the Myalgic Encephalomyelitis Society of America for the Institute of Medicine meeting on January 27, 2014. The comment was read at the meeting by Charlotte von Salis.
If anyone else who submitted oral or written comments to the meeting would like to share them on this blog, please let me know.
-Lisa Petrison
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Testimony by Dr. Maryann Spurgin, Founder, Myalgic Encephalomyelitis Society of America
There are people in this country who spend decades of their lives in silent, darkened rooms, crippled and in excruciating pain.
They have orthostatic intolerance of variegated causes (such as low blood volume, cardiac diastolic dysfunction, and haemotological and RBC pathologies) — they are unable to sit up or to stand.
They suffer hyperacusus — they cannot tolerate any light or sound without becoming severely more ill and without suffering additional pain that does not subside, nor can they summon the strength to speak.
Some are too weak to feed themselves, others paralyzed.
Many cannot even focus on a thought.
A significant group of such patients have died of complications of this disease — some at a young age, others some 20 years earlier than their peers of similar backgrounds and socioeconomic stati, according to a paper by Dr. Leonard Jason.
Known as Myalgic Encephalomyelitis, this disease has a long history. It was recognized by the World Health Organization as a neurological disease in 1969.
These severely ill people, and others with the same or similar yet milder symptoms, have been tossed into a pot with a group of other individuals whose symptoms look strikingly different — persons with depression, some with something so mild as unspecified fatigue, others with pain syndromes like fibromyalgia.
These are not the same diseases as Myalgic Encephalomyelitis.
This pot is what the government calls “Chronic Fatigue Syndrome” — a name that was the government’s 1988 response to an outbreak of M.E in Lake Tahoe in the early 1980’s, the Holmes criteria.
Unfortunately, the Holmes criteria was broadened in 1992 with the Fukuda criteria, and even further with the Reeves criteria.
Some youths with M.E. have died or become worse due to inappropriate treatments (Cognitive Behavioral Therapy and Graded Exercise Therapy) based on these “fatigue” definitions.
M.E was never recognized by the U.S government, but it is not new or fatigue based.
It is scientifically unsound to take people who are sick with M.E. and throw them into a pot with people whose illnesses look very different, and then to conclude that M.E. has no universal biomarkers.
There are more than 500 papers in the medical literature that show measurable physiological abnormalities in the melting pot of “CFS.”
These papers show a pathophysiology for all three of the essential components of the M.E. criteria that Dr. Melvin Ramsey described: circulatory, immune, and muscle impairment.
Articles describing all of these pathophysiologies in M.E patients, although published under the name “CFS,” are available on my website.
Although the cause or causes of M.E. are unknown, the pathophysiology of M.E is not “medically unexplained.” It is available to anyone willing to read the research.
Patients who show these abnormalities should be separated from the “CFS” pot and studied separately as M.E patients.
The Canadian Consensus Criteria (CCC) is a description of these M.E. patients and requires all three of the components that Dr. Ramsey originally described to meet the definition of M.E.
It appropriately identifies milder M.E. patients and those who are homebound and/or bedridden.
“CFS” does not name a specific disease. The study of “fatigue” and the term “CFS” should be abandoned.
We urge that the IOM cease its re-definition effort and recommend that the government adopt the CCC as a clinical and research definition of M.E. until more research can be completed.
Further, unrelated diseases such as fibromyalgia, depression, or unspecified fatigue should not be lumped or studied with M.E.
We further urge that M.E be called by its long-recognized name by the World Health Organization, “Myalgic Encephalomyelitis.”
Sincerely,
Dr. Maryann Spurgin, M.E. Society of America
https://web.archive.org/web/20140401062754/http://www.cfids-cab.org/MESA/
Dr. Maryann Spurgin
Note: Maryann would like to thank Danny-Z-Dog and Lisa Petrison for assistance with the development of this public comment.