Charlotte Von Salis gave her own statement at the meeting:
You’ve heard a lot today. You’ve heard from three government health agencies, you’ve heard from IOM-selected stakeholders, you’ve heard that there is a huge groundswell against this study, and you’ve heard why that is so.
What can you do? You can assess this situation as scientists and physicians. Dr. Nancy Lee is on record stating that Secretary Sebelius told her a case definition is a clinical decision that has to come from the clinical community, not the Federal government. Yet you have just heard from three representatives of the Federal government. And you have been told to coordinate and work with this study’s sponsor, the NIH, through its Pathways to Prevention program. This is in direct violation of IOM’s study process and presents a blatant conflict of interest.
How is this an independent and objective process? How is this about science and medicine? If you think your task order isn’t politically motivated, consider that the CDC has been well-aware of the scientifically sound and expert-driven Canadian Consensus Criteria for over a decade yet refuses to take down its own diagnostic and treatment guidelines, the harmful and misleading CFS Toolkit.
Your task, to develop clinical diagnostic criteria for ME and CFS, has already been accomplished. Two primers, specifically aimed at clinicians unfamiliar with the diseases, are already available. Both are based on criteria developed by disease experts and published in peer-reviewed medical journals. Both are available as easy -to-distribute pamphlets. I am referring to the Overview of the Canadian Consensus Criteria and the ME-ICC Primer for Medical Practitioners. The latter is an update of the former to reflect scientific developments through 2011.
That’s right. It’s based on science, not politics. And the combined knowledge of experts who collectively have diagnosed and/or treated more than 50,000 patients with M.E., have more than 500 years of clinical experience, have approximately 500 years of teaching experience, and have authored hundreds of peer-reviewed publications.
You cannot do better. Some of you are new to this disease. How would you feel if non-experts decided to diagnose heart failure? Or lymphoma? Or Lupus?
If you truly want to fulfill your task, all you need to do is read, share, and distribute these pamphlets. Both are available from the UK charity, Invest in M.E., and can be downloaded from a number of websites. Both can and should be distributed.
Each one of you is a unique position to do just that. Order these guidelines, print them out, or at least share the websites URLs with your networks. Use your positions to get these documents out to primary care physicians.
Tomorrow, tell the IOM to stop this needless study. Defer to the collective judgment of your eminently qualified colleagues and do your part to get the CCC officially adopted.
Resign from this panel. To do otherwise is to harm patient care and impede research.
Here is Maryann Spurgin's Testimony, which was read by Charlotte Von Salis
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 (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 Excercie 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 from it's 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