“If you want to understand today, you have to search yesterday." ~Pearl Buck
In order to understand the enigma of a hidden epidemic of one million men, women and children in the U.S. suffering from the debilitating disease, myalgic encephalomyelitis, one needs to understand the history of the disease.
Hillary Johnson wrote the epic book‘Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic’ where she depicts the history of the disease, spending nine years investigating the failure of the medical establishment to take the disease seriously as well as repeated governmental health agency malfeasance. Her book documents the history from 1984 to 1995.
Since then, there has been a lack of documentation recording the history of events and actions that reflect the concerted institutional effort to bury the disease ME. Mary Dimmock, ME advocate, along with her son, Matthew Lazell-Fairman, who suffers from severe ME, stepped up to the plate with their document, ‘Thirty Years of Disdain (Background): How HHS and a Group of Psychiatrists Buried Myalgic Encephalomyelitis’** (full version). This is an invaluable account of her and her son’s personal story trying to navigate the medical labyrinth of this disease, as well as an in-depth, referenced historical and political account of the disease that encompasses Johnson’s account and expands to the present time. The community was eager to read this important historical report. Some have asked Mary if she would deliver a shorter version for patients for whom reading long text is taxing. Again, Mary and Matthew came through and delivered their short summary version** to our community.
This strategic document is very timely.
The necessity of this type of historical documentation has come to the forefront again. We are in the midst of yet another struggle with the Department of Health and Human Services (HHS), accepting ME as the distinct neuro-immune disease that was identified in the early 1930’s.
In lieu of adopting ME criteria such as the Canadian Consensus Criteria (CCC) or the International Consensus Criteria (ICC) as requested by stakeholders, the Chronic Fatigue Syndrome Advisory Committee (CFSAC), medical experts, patients advocates and patients, HHS stubbornly and secretly hired the Institute of Medicine (IOM) for a million dollars and instructed them to create another set of criteria. The IOM panel was charged to bring evidence, based on research that predominantly used broad CFS criteria such as the Oxford and Fukuda, thereby excluding many ME symptoms and its treatments. The use of this broad IOM criteria will result in greatly reducing the probability of finding meaningful biological biomarkers as well as FDA approved treatments. This added delay will only prolong patients’ suffering since the general medical establishment will not be informed of current treatments that ME experts have been using with measurable success with their ME patients.
As this blog is being written, the Centers for Disease Control and Prevention (CDC) is preparing to use the IOM report to inform doctors on how to manage ME/CFS/SEID patients this February 16th, 1:00 pm - 2:00 pm EST, “CDC Grand Rounds Presentation on Chronic Fatigue Syndrome” which is being webcast to thousands of providers, researchers, and the public. Click here for link.
As we have reported, the CDC is also busy working on disseminating the results of the IOM report and criteria on their own website and for educational purposes to health professionals. This will have adverse consequences since this criteria does not distinguish the neuroimmune disease, ME. It lumps everyone together into another broad CFS definition.
Join MEadvocacy with our aim to raise awareness of this danger and avoid another thirty years of disdain.
From Mary Dimmock’s introduction:
In May 2015, my son and I released Thirty Years of Disdain, a review of how myalgic encephalomyelitis has been handled over the last thirty years. I've updated that document to reflect key events in 2015 and condense it. The document is available at http://bit.ly/The_Burial_of_ME_Summary
Myalgic encephalomyelitis (ME, also called chronic fatigue syndrome) is a devastating, complex disease that causes widespread impairment in neurological, immunological, autonomic, and energy production systems. ME patients are more functionally impaired than those with congestive heart failure, multiple sclerosis, and end-stage renal disease. Many of the estimated one million Americans with ME are too disabled to work, resulting in an estimated U.S. economic impact of $19-24 billion a year. The disease strikes both sexes and all ages. There are no FDA approved treatments and recovery is rare.
Yet, for the last thirty years, political agendas, institutional neglect, and bad science have buried ME under a vague condition of "fatigue," often associated with mental illness. The most widely accepted treatments have been cognitive behavioral therapy and graded exercise, used to convince patients they are not really sick, just deconditioned. Medical care is abysmal and too often results in physical harm. ME patients have been so neglected, disbelieved, and stigmatized that some have lost hope and committed suicide.
Thirty Years of Disdain examines the forces and factors that have denied the reality of ME and resulted in such a misguided national and international response. It examines how that misguided response has impacted research and drug development, degraded clinical care, and stigmatized and harmed ME patients. It shines a light on the magnitude of systemic change that is needed to correct this medical travesty and give ME patients hope in the future.
The recent government response to its own advisory committee’s August 2015 recommendations shows just how far we still have to go.
The longer version of this document, also updated, is available at http://bit.ly/The_Burial_of_ME_Background. Comments and questions welcome at firstname.lastname@example.org.
** Blog revised March 2018: Originals links no longer work. Updated with new links.