What Might Happen If...

ME/CFS became a “notifiable” disease?

There are many things that frustrate and enrage ME/CFS patients, but the difficulty of getting a diagnosis seems pretty close to the top of the list.

The lack of an established biomarker contributes to that frustration. The fact that numerous “case definitions” have been constructed since 1988 and differ within, as well as between, countries around the world muddies the situation even more. Symptoms that make a patient eligible for a diagnosis in one country may not even be included in another’s case definition. The situation could not be more confounding if the medical profession—including government research agencies—were doing it on purpose.

So, how do we know a disease is being taken seriously?  Here’s one way: When doctors and governments track it—if it’s designated as a notifiable disease.

Why isn’t ME/CFS a notifiable disease?

It’s not because there aren’t enough cases: The Centers for Disease Control and Prevention (CDC) estimates that there could be 2.5 million cases of ME/CFS in the US.

Wouldn’t you think CDC would want to diagnose ME/CFS reliably and keep track of how many people have it?

According to the CDC, one impediment is that there are four generally accepted case definitions, depending on location: the 1994 International Research Case Definition, the 2003 Canadian Consensus, the 2011 ME International Consensus, and the 2015 IOM (Institute of Medicine) Diagnostic Criteria. (1)

CDC.gov omits its very own, very first case definition, the 1988 Holmes “working case definition,” as well as the 1994 CDC and National Institutes of Health’s collaboration that resulted in the Fukuda definition and study. (2,3)

The current CDC.gov article, “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” highlights the only other criteria developed in the US, those of the 2015 IOM paper. (4)

In a section called “Information for Health Care Providers,” the CDC points out, “The IOM committee summarized the evidence base and proposed redefining the diagnostic criteria to facilitate timely diagnosis and to improve understanding of the illness among healthcare professionals and the public.” (1)

To clarify that word salad, CDC.gov reiterates the 2015 IOM paper’s stats on ME/CFS.

“As noted in the IOM report:
“An estimated 836,000 to 2.5 million Americans suffer from ME/CFS.
“About 90 percent of people with ME/CFS have not been diagnosed.
“ME/CFS costs the U.S. economy about $17 to $24 billion annually in medical bills and lost incomes.” (1)

So, the number of people with ME/CFS is 836,000—or it’s essentially three times that number? And how could anyone know that 90% of people with the condition haven’t been diagnosed?  Where are those individuals, in this scheme? Are they included in the 2.5 million upper estimate of how many people have ME/CFS?  Is their existence inferred from the $24B in lost productivity? What are any of these numbers based on?

There don’t seem to be any answers to those questions but it’s clear that, nearly a decade later, the IOM/CDC strategy of “redefining the diagnostic criteria” for ME/CFS has not been successful. The disclaimer on the CDC.gov page “Information for Health Care Providers” shows just how unserious CDC is with respect to ME/CFS:

“Disclaimer: The content of this ME/CFS website is for informational purposes only and does not represent a federal guideline or recommendation for the treatment of ME/CFS. The information provided on this website is not intended to be a substitute for the medical judgment of the healthcare provider and does not indicate an exclusive course of action or treatment.” (1)

So, what now?

As poor (and old) as the IOM criteria are, why doesn’t CDC—the guardian of official disease statistics—just adopt them for now and start counting patients via the reportable/notifiable diseases channel?  US government health agencies aren’t funding any research that might actually define ME/CFS, so why not just go with the same-old-same-old and see how far it gets us?

CDC.gov’s section titled “National Notifiable Diseases Surveillance System (NNDSS)” lists the approximately 120 notifiable diseases the agency tracks in the US. Here are the CDC-defined criteria (from CDC.gov [1]) that differentiate between “reportable” diseases (in local tracking) and “notifiable” (nationally reported) diseases:

On the federal level, CDC.gov explains that surveillance tracks:

“[A] disease or condition that poses a serious health threat to Americans. These diseases and conditions include:

• infectious diseases, such as coronavirus disease 2019 (COVID-19);

• foodborne outbreaks, such as E.coli; and

• noninfectious conditions, such as lead poisoning.” (1)
  
  [Author’s note: If you’re looking for AIDS on the list of notifiable diseases,
  it’s been “reclassified” as “HIV Stage III.”]

Reports of ME/CFS “clusters” have existed since 1984. Even if ME/CFS were to be placed in the “noninfectious conditions, such as lead poisoning” bucket of notifiable diseases—since there seems to be a federal aversion to finding a transmittable causative agent—health care providers could report cases of ME/CFS to the federal government so we get a better idea of how many people are suffering with this life-destroying disease.

Kindle and paperback versions of my most recent books, America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syn­drome Epidemic And Its Link To AIDS, Updated 2^nd Edition (2022) and Ampligen: The Battle for a Promising ME/CFS Drug (2022), are available on Amazon.com

BIBLIOGRAPHY
1. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”; CDC.gov. Last reviewed and updated April 27, 2021. https://www.cdc.gov/me-cfs/index.html
2. Holmes, Gary P. et al.; “Chronic Fatigue Syndrome: A Working Case Definition”; Annals of Internal Medicine, March 1, 1988, Volume 108, Issue 3: 387-389. https://doi.org/10.7326/0003-4819-108-3-387
3. Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. “The chronic fatigue syndrome: A comprehensive approach to its definition and study.” Annals of Internal Medicine. 1994;121:953–959.
4. Institute of Medicine (US). “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” National Academies Press, 2015. https://doi.org/ 10.17226/19012