ME/CFS EVIDENCE AND ACTIVISM
THE CONSENSUS BEHIND THE ME/CFS MYSTERY
In the year 2015, when I was developing chronic fatigue syndrome, the United States National Academy of Medicine (NAM), formerly known as the Academies of Medicine (AOM) and Institutes of Medicine (IOM), declared ME/CFS to be an illness of a biological foundation, obliterating the decades long psychological basis that had been ascribed to this affliction, stating definitively that it is a medical disease of a physical origin that has yet to be discovered. It marked the first time a Government agency in a major industrialized country made such a statement.
The World Health Organization had been declaring it a neurological disorder since 1969; however, the psychological community at this time largely ignored this categorization and instead continued to promulgate it's opinion that it was a disease largely of mental origins, rooted in hysteria. This belief was adopted by the major countries of the world. The millions of people who suffered from ME/CFS, wallowing in symptoms that had been recognized since the early 1800s and publicized through occasional outbreaks that flared up around the world in the early to mid-1900s, were summarily dismissed and banished into darkness.
Up until the mid-1980s, this mysterious and impugned condition had been known only as myalgic encephalomyelitis when a flare up occurred in the Lake Tahoe, Nevada area of the United States In 1984. The regional medical community couldn't figure out the cause behind the symptoms. The Centers for Disease control refused to adequately investigate the outbreak, dismissed its existence, calling the phenomenon “chronic fatigue syndrome” blaming it on the popular “psychological hysteria”. By 1986, the media was calling it “yuppie flu”. Despite the connotation, the name stuck.
Fast-forward to 2015 - Since the National Academies of Medicine has made it’s announcement the CDC and the NIH have both followed suit by declaring ME/CFS a biological illness that is crying out for further research and an understanding of the biological underpinnings. That said, despite a unanimous congressional declaration passed in May 2019, the amount of money allocated for ME/CFS by the NIH specifically for research functions of major diseases has only increased from $5 per patient in 2014 to $15 per patient in 2019.
This is a paltry dime compared to major diseases of similar numbers and burden (2.5 million people in the US) such as cancer ($6,500) HIV/AIDS ($3000), Chronic Pain ($856), Parkinsons ($224), Multiple Sclerosis ($111) etc. This is an injustice that needs to end. The NIH, in spite of promising emerging research from several areas of the country with the small amount of money it has spent on research, continues to make excuses in regard to spending the entire allotted yearly 250 million that is, on-average, spent on every other major disease recognized in the United States.
Private funding from private research is filling a number of the gaps left behind by the refusal of NIH to commit funding and back up its own words. And while private research will be instrumental in understanding of chronic fatigue syndrome and supplementing any kind of government research, without the full support of funding from the government, the country lacks the needed infrastructure for awareness, understanding, and university grant funding that will make the plight of people with ME/CFS a priority consideration for public health Initiatives and medical treatment/research programs.
Most of all, without the urgency in recognizing the existence and suffering of ME/CFS patience, and an immediate halt to the indifference and prejudice that has raged across the world over the past half century, the existence of people with this disease will not get markedly better in the near future.
This kind of support and understanding can largely be enacted by the government stepping forward and establishing a protocol driving public awareness and understanding and a focus on research that is equal to those of other major medical illnesses. This awareness comes from funding. It is not enough for the government to simply hang out a couple of websites and post updated peer-reviewed studies every few months that the public and the medical professions largely do not read because they are not pressured to regard them.
That said, in the private sector there is now the available evidence for us to move forward as private citizens with advocating and initiating significantly increased public understanding of ME/CFS. We have the tools and the weapons to fight back against the tide of devastating misinformation, bigotry, indifference, and dismissal that has led to millions of neglected and suffering people for so long. We have the ability to change private attitudes, beliefs, priorities, initiatives, and agendas in our communities not only in the United States but in every other major industrialized nation. We can do this by using the data at national hand, defining the illness through the use of data that demonstrates post-exertional malaise while we're waiting for other biomarkers, and using this evidence to destroy the world's seemingly continuous propensity to turn a blind eye.
Those who have ME/CFS and their supportive family and caretakers can write letters to the editor of the local newspaper, contact the local and media and volunteer to be subject of a feature story regarding ME/CFS, write their congressperson, their state/provincial governments, their local City Councils, their local medical clinics and hospitals, and their local health departments and Human Service Agencies.
The initial contacts may not amount to much or get a response; however, as more and more people write, demand, witness, and show pictures that testify to the existence of this illness and the people afflicted by it who live in the shadows, the mounting pressure can turn the tide. We can't just sit around and wait for the government to get its act together and do the work for us. We have the existing proof that we can arm ourselves to begin fighting this war ourselves. This evidence and the links that support its documentation are listed below:
National Academies of Medicine (previously IOM) announcement 2015: https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html
National Academies of Medicine (previously IOM) basic CFS fact sheet: https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf
The CDC website:
https://www.cdc.gov/me-cfs/index.html
NIH Website:
https://medlineplus.gov/chronicfatiguesyndrome.html
Health and Human Services Office of Women's Health:
https://www.womenshealth.gov/a-z-topics/chronic-fatigue-syndrome
Open Medicine Foundation (research arm for CFS):
https://www.omf.ngo/what-is-mecfs/
New York State Association of Family Physicians Winter 2018 Article:
http://www.nysafp.org/NYSAFP/media/PDFs/Family%20Doctor/Family-Physician-Winter-2018WEB.pdf#page=23
Pediatric CFS:
https://www.omf.ngo/wp-content/uploads/2018/07/ME-in-Children-Dr-David-Bell.pdf
NIH (National Institutes of Health) Categorical Spending for Diseases 2019:
https://report.nih.gov/categorical_spending.aspx
WORKWELL FOUNDATION (Post-exertional malaise, defining and distinguishing hallmark symptom of ME/CFS)
https://workwellfoundation.org/wp-content/uploads/2020/03/WW-PEM-Timecourse.pdf
