I wish to thank advocate Eileen Holderman for her contributions to this blog post.
The Department of Health and Human Services (HHS) refuses to use the name myalgic encephalomyelitis (ME) in spite of the fact that it is being used worldwide by ME experts, advocates and patients. Instead, HHS insists on using their demeaning moniker – chronic fatigue syndrome (CFS). Their refusal to use the proper name for this disease ignited a long course of government malfeasance, corruption and marginalization of one million American men, women and children suffering from ME.
Naming and Classifying the Disease
In the mid-1950’s, an epidemic broke out at the Royal Free Hospital in London. Following that epidemic, the name myalgic encephalomyelitis was first used by ME pioneer Dr. Melvin A. Ramsay (as suggested by Dr. Donald Acheson).
Since 1969, the World Health Organization (WHO) has classified myalgic encephalomyelitis under Neurology – ICD-10, G93.3.
However, in the 1980’s, following the Lake Tahoe, Nevada outbreak of ME, the U.S. Centers for Disease Control and Prevention (CDC) chose a different name for the disease. In their quest to minimize the seriousness and potential huge impact of the disease, CDC coined it with the trivializing name – chronic fatigue syndrome (CFS).
In 2015, The Institute of Medicine (IOM) was contracted by HHS to devise another government constructed name and criteria. IOM created a new demeaning name for the disease – systemic exertion intolerance disease (SEID), which has been rejected by the majority of experts, advocates, and patients. The name is misleading because it implies that patients are only ill when they exert themselves and are otherwise fine if they don’t – which of course is not true.
The Fiction of CFS
The name – chronic fatigue syndrome – along with the government criteria, are an HHS fictional construct. In their attempt to disappear the serious neuroimmune disease ME, HHS deliberately chose the name chronic fatigue syndrome because it could be easily conflated with the common condition of chronic fatigue. Their intention was to create a false impression that those with CFS were primarily contending with one symptom – fatigue – rather than a vast number of symptoms affecting multiple body systems.
The scientific and medical communities are responsible for naming and developing criteria for diseases – not governments. ME expert researchers and clinicians named the disease myalgic encephalomyelitis and developed accurate criteria for the disease (CCC, ICC). HHS should not hijack the private scientific and medical sector’s authority.
The Reality of ME
Myalgic encephalomyelitis is a neuroimmune disease (with an infectious component and/or etiology) appearing in epidemic and sporadic forms. ME affects multiple systems of the body: neurological, immune, cardiovascular, endocrine and energy systems. The illness typically has an acute onset of a viral or bacterial infection or toxin or chemical exposure.
The symptoms of ME are numerous and include but are not limited to the following: post-exertional collapse, muscle and joint pain, enlarged lymph nodes, chills, low-grade fever, headaches, extreme fatigue and weakness, cognitive impairment (delayed processing, aphasia, short term memory loss, etc.), orthostatic intolerance, dizziness, sleep dysfunction, allergies, mold and chemical intolerance, frequent reactivated infections and co-infections. The symptoms of ME leave patients severely sick and disabled for decades and many die prematurely from complications of the disease. Currently, there is no cure for the illness.
About one million American men, women, and children suffer from ME and about 17 million worldwide. Most patients are disabled and cannot work and about 25% are bedbound and cannot care for themselves. Studies show that the quality of life for patients with ME is one of the poorest compared to other chronic diseases.
“In my experience, it [ME] is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”—Dr. Daniel Peterson
The Repercussions of a Harmful Name
The CDC manufactured name – chronic fatigue syndrome – and the CDC criteria (see next blog post), have harmed patients worldwide and have resulted in the following:
- Inadequate federal funding – For over 30 years, the National Institutes of Health (NIH) has refused to adequately fund meaningful biomedical studies for the disease. ME receives less federal funding than hay fever, and a mere 2% of other similarly burdened diseases, yet has an enormous cost to our nation’s economy. From the start, NIH and CDC plotted to eliminate the disease by focusing on ‘fatigue’ in the name as evidenced by the letter the late Dr. Straus of NIH wrote to Dr. Fukuda of CDC in which he stated: “ I predict that fatigue itself will remain the subject of considerable interest but the notion of a discrete form of fatiguing illness will evaporate….I consider this a desirable outcome.” (see letter part 1 and part 2 provided by advocate Craig Maupen)
- Stagnant scientific advancement – The lack of NIH funding has stalled impactful scientific advancements. Although over 5,000 scientific papers have been published on the disease, many were privately funded and most findings of biomedical abnormalities were dismissed or not replicated by HHS. The health agencies’ use of the name chronic fatigue syndrome (and flawed criteria) ensures paltry funding and controversy, which are reasons some researchers will not study the disease.
- Insufficient and erroneous medical education – HHS has spread misinformation about the disease on their websites and in their medical CMEs and materials. Despite advice from ME experts, advocates and members of the federally appointed Chronic Fatigue Syndrome Advisory Committee (CFSAC) to correct the inaccurate medical information, HHS refuses to do so. They continue to use chronic fatigue syndrome and often publish materials that describe the common condition of chronic fatigue instead of the neuroimmune disease ME.
- Lack of expert clinicians – Lack of medical education has resulted in a scarcity of clinicians. The majority of patients do not have access to an ME specialist and are left to deal with local doctors, many who are not knowledgeable about the disease – leaving patients without proper medical care. The stigma attached to the disease due to the name and the intentional confusing medical information from HHS, are reasons such few doctors go into this field.
- Recommendations of harmful treatments – HHS’s erroneous medical information has led unknowing clinicians to recommend harmful treatments to their ME patients, such as prescribing unneeded antidepressants, graded exercise therapy (GET) and cognitive behavioral therapy (CBT). Many patients have been seriously harmed by these recommendations, some permanently. The use of the flawed name – chronic fatigue syndrome – and flawed criteria deliberately conflates patients with ME with some who do not have ME. Therefore, treatments which are harmful to ME patients which may help those without ME, get wrongly attributed as successful treatments for ME patients, due to the conflating of the patient pool.
- No FDA-approved treatments – The U.S. Food and Drug Administration (FDA) denied approval of Ampligen (an immune modulator shown to be effective in the drug trial). FDA has no approved drugs for ME patients and their inactions are influenced by HHS’s description of the “condition” as primarily “fatigue.”
- Psychiatric bias – The CDC’s pseudoscientific name (CFS) and criteria enable a psychiatric bias to proliferate about the disease. Some in the psychiatry and psychology fields (Wessely, Chalder, Sharpe, White, etc.) and in other fields (Gill, Walitt, Saligan and the late Straus and Reeves, etc.) intentionally misclassify the disease as a psychosomatic condition – in spite of overwhelming scientific evidence that classifies the disease as biological. It is lucrative for psychiatrists and psychologists, as well as opportunists from other fields, to hijack a disease with a trivial and unscientific name – especially when government health agencies give preference and award grants to studies with a psychiatric slant and because health insurance companies reward those willing to put a psychological spin on a disease that isn’t psychological.
- Difficulty getting approved for disability insurance – The inaccurate name and medical information are co-factors why many ME patients have a grueling time, no matter how severely ill, getting approved for disability benefits. In fact, the U.S. Social Security Administration (SSA) frequently denies patients benefits during the initial application process, citing that “fatigue” doesn’t qualify them for disability. Additionally, the psychiatric bias connected to the name and criteria of CFS causes many patients to lose their ERISA based disability insurance after the two-year period because ERISA only covers psychiatric illnesses for two years – despite the fact that the illness is classified as biological.
- Rejection of health insurance reimbursements – The trivial name gives health insurance companies ammunition to deny payments for important tests such as two-day CPET, NK cell function, and cytokine panel blood tests, among many others, as well as for efficacious treatments such as antivirals and immune modulators.
- Stigmatization of patients – The media frequently propagates government propaganda and a psychiatric bias about the disease. Many (except for a minority of informed journalists) don’t report on the abundance of published scientific biomedical findings, but instead use faulty government information; some because they wrongly defer to the government health agencies as the ultimate authority rather than investigate; and some because they pander to the government health agencies to glean favor and receive preferential treatment for future articles. Editors routinely use chronic fatigue syndrome instead of myalgic encephalomyelitis – and worse – often drop the word ‘syndrome’ from the headline of the article – downgrading the disease of ME to a condition of chronic fatigue. The unscientific name gives the media dispensation to write unscientific articles.
- Marginalization of patients – Despite plenty of scientific evidence about ME, many family members and friends of patients often fall prey to the deception started by the government and promoted by the media. Patients are often subjected to comments such as: “I’m tired too, but I am able to push through it – why can’t you?”; “Go jogging – it will make you feel better!” Because the name chronic fatigue syndrome obsessively focuses on one of a vast number of symptoms a patient suffers from – patients are wrongly labeled lazy, sleepy or merely tired.
HHS Must Rectify their Indefensible Nomenclature
For three decades, HHS has harmed ME patients by using their degrading name – chronic fatigue syndrome – for the disease – causing the following damaging results: paltry federal funding, choking consequential medical advances, erroneous medical education, a scarcity of expert researchers and clinicians, recommendations of harmful treatments, no FDA-approved drugs, proliferation of psychiatric bias, obstacles getting approval for disability insurance and health insurance reimbursements, and stigmatization of patients by the media, the public, family and friends.
And for three decades, ME advocates, patients, caregivers and experts have called for HHS to stop their harmful practices and use the name myalgic encephalomyelitis exclusively and resolutely!*
*Look for the upcoming blog post about ME criteria that will address how to eradicate the name chronic fatigue syndrome and retire the CDC and IOM criteria.