ME/CFS: what’s in a name? according to ME Research UK

ME/CFS: what’s in a name?

Is it "M.E." (also known as Enteroviral Encephalomyelitis), or "CFS", or "ME/CFS" ?

Unfortunately, there can be confusion over what to call the disease because so many names have been used over the years.

In common with many healthcare systems, healthcare professionals and researchers, as well as other charities, ME Research UK uses the term "ME/CFS". 

Global Advocates 4 Myalgic Encephalomyelitis (GAME) facebook group - Q&A Session with Byron Hyde, MD: What is your opinion of the new 2021 NICE guideline for ME/CFS?

"This is a guideline promoted by Dr. Charles Shepherd who also pretends to have had M.E. (also known as Enteroviral Encephalomyelitis). I know Dr. Shepherd who never had M.E. (also known as Enteroviral Encephalomyelitis) but did have adult Varicella (chicken pox). Many childhood diseases such as measles, chicken pox, infectious mono, rubella occurring in

adults can cause disastrous illness and has a much-increased risk of death or very serious permanent injury. Dr. Shepherd had a near death resulting chicken pox infection when he was a young physician, possibly at 28 years of age and as far as I know, never worked again as a physician but possibly went on a permanent disability pension from the UK government due to this injury. I have no doubt he had serious brain injury resulting from chicken pox. This is not M.E. (also known as Enteroviral Encephalomyelitis). This is one of the many causes of CFS. Following the first world symposium on M.E. that Nightingale held at Cambridge University, Shepherd in a letter to the University of Ottawa Press, threatened to sue them if they published to book. This was the combined work of more than 50 eminent world-wide University professors and M.E. experts. They were producing Nightingale’s book, The Clinical and Scientific Basis of M.E. and CFS.. The University of Ottawa Press immediately dropped us. Nightingale published the book themselves and we sold almost 10,000 copies of this book for a profit of over a million dollars. These funds kept Nightingale going for over 15 years. Anyone who confuses M.E. (also known as Enteroviral Encephalomyelitis) with "CFS" doesn’t know what they are talking about. So, when I see guidelines of "ME/CFS" they don’t know what they are talking about. There is some good in only a few of the suggestions in these guidelines but any improvement is destroyed by Shepherd’s statement as follows: The New Nice Guidelines: recommends to consider the diagnosis of ME/CFS when patients present with symptoms of disabling fatiguability, post-exertional malaise, unrefreshing sleep, and cognitive difficulties, all for a minimum of 6 weeks (4 weeks in children and young people). A: there is "no such thing" as ME/CFS; B: M.E. is a proven enterovirus illness. CFS can represent the chronic features of possibly over 100 different disease, particularly if they injure the brain or the cardiovascular system such as Shepherd's adult chicken pox. 3 C: All of the 100's of "CFS" diseases are called "CFS" because they have been insufficiently investigated, at any time after onset. So, the physician is unable to come to a correct diagnosis. D: To most physicians, and my most I mean 95% of physicians, "CFS" has come to mean a minor psychological disease. It is called MINOR, so the insurance agencies then don’t have to pay disability. This will unfortunately not change in our life time. E: The term "CFS" should only refer to Insufficiently investigated patient illness or I.I.I.. F: By waiting for 6 weeks, this clearly places "CFS" into the field of psychiatry. Any knowledgeable physician knows, that unless an infectious disease is (1) prevented by immunization, (2) is treated immediately at onset, (3) the patient is liable to have PERMANENT chronic illness. Is that what Dr. Shepherd wants, permanent chronic illness?

I believe any physician or committee who espouses waiting for 6 weeks to diagnose a disease is an idiot. I believe, as long as the term "CFS" exists, M.E. (also known as Enteroviral Encephalomyelitis) patients will be diagnosed as a minor psychiatric disease by 95% of all physicians. I believe the new NICE guidelines are dangerous as was the original guideline"

"If a patient or a family member has tried to search the internet for an understanding of Myalgic Encephalomyelitis (M.E.) (also known as Enteroviral Encephalomyelitis), Enteroviral Poliomyelitis-like Syndrome, or so-called “Chronic Fatigue Syndrome” (CFS, currently being called “ME/CFS”), they will have been overwhelmed by the multitude of technical descriptions and the numerous overlapping medical conditions. There have been many attempts to define CFS, some of them described in our 1992 book ‘The Clinical and Scientific Basis of M.E. and CFS’. M.E. and ME/CFS (SEID) represent a complex, multi-system group of afflictions, adversely affecting the brain, heart, neuro-endocrine, immune and circulatory systems in our bodies, but, crucially, M.E. is a distinct illness, while both CFS and ME/CFS are "umbrella terms" for a group of symptoms "common to many illnesses and conditions". This has led to M.E. symptoms being confused with the symptoms for neurasthenia, multiple chemical sensitivities, fibromyalgia, post-mononucleosis fatigue syndrome, and much more" - Byron Hyde, MD

This is because it causes less confusion when reporting on research - it is the term used by the UK’s National Health Service (NHS) boards and the National Institute for Health and Care Excellence (NICE), and so using "ME/CFS" accords with the diagnosis given to those affected.

Nomenclature is important as accurate and consistent naming can reflect prevailing attitudes to a disease, and this is especially true for a condition that struggles with recognition and validation.

Global Advocates 4 Myalgic Encephalomyelitis (GAME) facebook group - Q&A Session with Dr. Byron Hyde, MD: Why is it, that the majority of M.E. (also known as Enteroviral Encephalomyelitis) experts fielded by the CDC and NIH who constructed the "useless (and dangerously misleading) "CFS" criterias have never seen any significant number of M.E. (also known as Enteroviral Encephalomyelitis) patients?

Answer 1: I believe the original 1988 "CFS" definition board members were selected primarily by Dr. Stephen Straus of the NIH and there was a very good chance, that they or their department would receiving a sizable NIH or CDC grant. The USA’s leading and published M.E. (also known as Enteroviral Encephalomyelitis) expert, Dr. Alexis Shelokov, also a member of the White House Committee on Science, was not even allowed to speak at the CDC organizing committee, assembled to formulate the "original" 1988 "CFS" diagnostic criteria at the CDC in 1986, but physician’s and PhD's with NO EXPERIENCE in this area, were placed on the "original" 1988 CDC definition for "Chronic Fatigue Syndrome". Some might call this corruption"

However, differences in the name do not change the lived experiences of those affected by the disease. 

(What disease is ME Research UK even talking about - M.E. (also known as Enteroviral Encephalomyelitis), or the many other illnesses "erroneously" labeled under the terminology of a "Chronic Fatigue Syndrome"?)

What does the name mean?

M.E. stands for "Myalgic Encephalomyelitis" (which is also known as "Enteroviral Encephalomyelitis" and which is an 'acute onset' testable neurological disease, which would require emergency inpatient hospitalization, upon onset - 2007 & 2016 Nightingale Research Foundation Definitions and the 2011 ICC with inpatient emergency hospitalization, clinical investigation with infectious diseases, neurological management being indicated in response upon onset), while "CFS" stands for "Chronic Fatigue Syndrome" (which is based upon a number of 'diagnosis of exclusion' 'fatigue state' criterias defined by "unexplained fatigue" persisting after a number of months, whether it's 6 months as originally indicated, or if it's reduced to 3 months, and 'erroneously labeled' under the guise of 'ME/CFS'. There is no specific indiction, that it is connected to 'emergency' inpatient hospitalization upon onset, nor that it is specifically an 'acute onset' disease but is based solely on a syndrome of symptoms, but more or less, watchful waiting, pacing and energy management, is indicated in response - 1994 Fukuda 'CFS', 2003 CCC 'ME/CFS', 2015 SEID ('ME/CFS'), 2017 CDC's 'ME/CFS' and 2021 NICE's 'ME/CFS' with the latter two being influenced by 2015 SEID - 'ME/CFS')

"Myalgic Encephalomyelitis" can be broken down as follows:

• My refers to muscle
• algic to pain
• Encephalo to the brain
• myel to the spinal cord
• itis to inflammation

So: muscle pain and inflammation of the brain and spinal cord.

"Unfortunately, the majority of physicians in the UK, Europe and North America, not to mention the rest of the world, have a poor and sometimes distorted idea of what Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis) represents. One of the several fallacies is that M.E. is just another name for Chronic Fatigue Syndrome (CFS). It is not and never has been. M.E. is a biphasic epidemic and sporadic enteroviral infectious disease. Up to 1955 and the introduction of Jonas Salk’s polio immunization M.E. tended to occur in the same location and at the same time as polio epidemics. In epidemic form, both Polio and M.E. tend to peak in the north temperate hemisphere during the period of July to November, with a last small blip around Christmas when families tend to get together" - Byron Hyde, MD

The disease is also sometimes called "Myalgic Encephalomyelopathy". Here, “pathy” refers to the study of an illness. This is because there is currently insufficient research evidence to prove active inflammation. 

"Understanding M.E. is relatively simple. However, understanding M.E. was much simpler sixty years ago. Prior to 1954, if the patient fell ill with M.E. their illness would have been called: Missed Polio" - Byron Hyde, MD

"The Invisible Disease: The tragedy persists today. There is yet no curative treatment or immunization for M.E. or any of these non-polio enteroviral illnesses. Other than for the three polioviruses, there are no preventive immunizations. Because M.E. so rarely kills, it has become an almost invisible disease. Yet several enteroviral infections in their most severe form result in various chronic disabilities and some in paralysis and death, in addition to causing a tremendous economic burden to the state. There is no doubt that enteroviruses cause M.E. To date, the only viruses recovered consistently in any epidemic of Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis) disease have been enteroviruses. This is the virus family we recovered in Canada during the 1984 North American pan-epidemic that struck Lake Tahoe ("Enteroviral Encephalitic" illness), North Carolina, Montreal, and across Ontario and in all subsequent M.E. patients, where a viral cause was found" - Byron Hyde, MD

The disease of a thousand names

Some terms used over the years to refer to what we now call "ME/CFS" ('SEID', is what you are calling the latest "CFS" criteria, which "excludes" diagnosable diseases, such as "M.E."), which would include 'exclusion' of Iceland Disease and Royal Free Disease, and are tied to early geographical outbreaks, while others, such as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), describe the symptoms, or reflect what scientists believe explains the disease, the latter is connected to the 1988 "CFS" Holmes criteria. 

"The term Myalgic Encephalomyelitis was a name developed to describe the disabling chronic injury sustained by the nurses and physicians of the Royal Free Hospital in London England in 1955. This epidemic was part of the combined epidemic of paralytic and missed poliomyelitis which struck across England and London that year. This was also the same year that the first major successful paralytic polio immunization, the incredibly effective Jonah Salk immunization, began to be distributed in the United States of America" - Byron Hyde, MD

"There is also a major forgotten tragedy associated with the Salk and Sabin polio immunizations. These immunizations were so rapidly successful in preventing paralytic poliomyelitis that immediately after its release the number of cases of deaths and paralysis caused by the three known polioviruses ceased almost overnight in much of the western world. Nobody realized the number and extent of these some 100 different but similar enteroviruses in 1955 or the pathologies they continue to cause. Within ten years of the release of these immunizations, probably as many as 50,000 enteroviral researchers around the world were dismissed or their funding removed. Almost none of these enteroviral experts were left to work on the largely unknown enteroviruses causing M.E. and the other severe enteroviral diseases. I have no doubt 100,000 deaths or more occur every year around the world due to these enteroviruses. I have no doubt 100,000 cases of chronically disabling Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis) occur around the world every year" - Byron Hyde, MD

"The Salk immunization solved the problem of flaccid paralysis and death caused by the three known polioviruses but in 1955 Salk and colleagues didn’t realize there were some hundred other dangerous enteroviruses which existed but had not yet been discovered. These missing links to the puzzle of acute and chronic enterovirus illness were not included in these Salk and later Sabin polio immunizations. Unknown to them, some of these other dangerous enteroviruses also caused flaccid paralysis and several caused what they referred to as missed polio, what we know since the 1950s as myalgic encephalomyelitis. Many of these other disease causing enteroviruses are very similar in genetic structure to the then known polio-enteroviruses. Many differ, one from the other, by less than 5% of their genomic (genetic blueprint) structure. There are at least six or more enteroviruses causing paralytic or flaccid paralysis and I assume that one day they will all be included in the polio immunization. These relatively new enteroviruses appear to be on the ascendant" - Byron Hyde, MD

Still others, such as the Institute of Medicine’s 2015 suggestion of Systemic Exertion Intolerance Disease (SEID), have never been adopted.

After the Incline Village outbreak in Nevada in 1984, the disease was sometimes (erroneously) called  Chronic Fatigue Syndrome or CFS. 

"The physician and patient alike should remember that "CFS" is NOT a disease. It is a "chronic fatigue state" where the one essential characteristic of "M.E." (also known as Enteroviral Encephalomyelitis) is "acquired" Central Nervous System (CNS) Dysfunction, that of "CFS" is primarily "chronic fatigue". By assumption, this CFS "fatigue" can be "acquired" abruptly or gradually. Secondary symptoms and signs were then added to this "primary fatigue" anomaly. None of these "secondary symptoms" is individually essential for the definition and few are "scientifically testable". Despite the list of "signs and symptoms" and "test exclusions" in these criterias, patients who conform to any of the CDC, Oxford, Australian and Canadian CFS criterias may still have an "undiagnosed" major illness, certain of which are "potentially treatable". Although the authors of these criterias have "repeatedly stated" that they are "defining a syndrome" and not a specific disease, patient, physician, and insurer alike have tended to "treat this syndrome as a specific disease or illness", with at times a "potentially specific treatment" and a specific outcome. This has resulted in much confusion, and many physicians are now "diagnosing" CFS as though it were a "specific illness". They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say: “you have CFS and nothing can be done about it”. The CFS criterias have another curiosity. If in any CFS patient, any major organ or system injury or disease is discovered, the patient is removed from the criteria. The CFS criterias were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes" - Byron Hyde, MD

"CFS" became the term used by some healthcare providers who were sceptical about the serious physiological nature of the "M.E." (also known as Enteroviral Encephalomyelitis) disease, and this is why the use of "CFS" remains controversial today.

"CFS is a syndrome based upon a series of symptoms that are common to hundreds of different, often serious diseases and diagnostic of none. "CFS" can also represent multiple different pathologies or diseases in the same person. At times, "CFS" may be related to "undiagnosed" genetic illnesses. Many physicians assume patients with multiple symptoms and no easily observable pathologies are actually hysterical, anxiety neurosis or depressive patients. They employ the term "CFS" in place of making the unwelcome diagnosis of hysteria or psychiatric disease. The term "CFS" should not be utilized, as in the minds of most physicians it is a disparaging term, and in the minds of many physicians, a term belittling to the patient" - Byron Hyde, MD

"The US Centers for Disease Control and Prevention (CDC) first defined CFS, with great emphasis on the word “FATIGUE”, in 1988. This definition, referred to as “Holmes”, was later replaced by the 1994 ”Fukuda”, then by the 2005 “Reeves”, and most recently by the 2015 IOM (Institutes of Medicine) report, still emphasizing FATIGUE" - Byron Hyde, MD

In general use, the most widely recognised terms are ME/CFS, myalgic encephalomyelitis (M.E.) (also known as Enteroviral Encephalomyelitis) and, separately, Chronic Fatigue Syndrome (CFS). M.E. (also known as Enteroviral Encephalomyelitis) and CFS are recorded separately by the World Health Organisation, with both being classified as diseases of the nervous system. Each has a separate history and differences in their main symptoms and origin.

In the media, the term “Myalgic Encephalomyelitis" (also known as Enteroviral Encephalomyelitis) formerly known as "Chronic Fatigue Syndrome” is being used more often as "the physical nature of the disease becomes more and more accepted".

Global Advocates 4 Myalgic Encephalomyelitis (GAME) facebook group - Q&A Session with Dr. Byron Hyde, MD: Why have the CDC, the NIH, the M.E. Associations and ME/CFS Associations failed M.E. (also known as Enteroviral Encephalomyelitis) patients? 

"Answer #1: I believe the CDC and the NIH were totally and negatively influenced by Dr. Stephen Straus of the NIH. It is possible Dr. Straus’s judgement was influenced by the fact he had a frontal lobe brain tumour that I suggested to him, existed in 1985, well before the first CDC definition was published. Frontal lobe disease can severely influence your judgement. Also, when the NIH puts someone in charge of an administration there are no apparent checks and balances to remove that person unless they are involved in a major crime"

"Answer #2: As repeatably remarked upon, the CDC administration believes that "CFS" is a minor psychiatric disease. Question? Have they been influenced by the insurance industry who doesn’t want to pay disability to these patients. This is a real question since the largest single majority group of adult patients with M.E. (also known as Enteroviral Encephalomyelitis) are health care workers and teachers, the two groups who are (a) most in contact with infectious disease, (b) are most exhausted due to their work load, which makes them most susceptible to acquiring an infectious disease. (c) these are the groups with a relatively high income and all are insured. By making M.E. (also known as Enteroviral Encephalomyelitis) and "CFS" minor psychiatric diseases, the insurance industry saves not millions but probably many, many billions of dollars every year. Now if you are head of the CDC and a senior executive of a major insurance company when you retire with your low government pension, would you like to come to work with us for a salary of a million dollars a year for a few years so we can absorb your medical knowledge. Would you refuse?" - Byron Hyde, MD

Global Advocates 4 Myalgic Encephalomyelitis (GAME) facebook group - Q&A Session with Byron Hyde, MD: Why if we can develop a 20 minute test to diagnose Coronavirus-19 in a few months, why haven’t the CDC and NIH developed a test for "M.E." (also known as Enteroviral Encephalomyelitis) patients? 

Answer (1): Few people die of M.E. (also known as Enteroviral Encephalomyelitis) immediately, so there is no impetus to develop such a test.

Answer (2): The CDC and no doubt those at the NIH responsible believe M.E. (also known as Enteroviral Encephalomyelitis) is the same as "CFS" and CFS is a minor psychological disease. So there is not possible test for this.

Answer (3): No one in authority and few physicians outside of virologists realizes that epidemic Polio was "only" an enterovirus, almost identical to the "enteroviruses" which causes M.E.. Also, almost no practicing physician today has ever seen a case of poliomyelitis. 

Global Advocates 4 Myalgic Encephalomyelitis (GAME) facebook group - Q&A Session with Dr. Byron Hyde, MD: Why is someone not suing the NIH and CDC for gross negligence?

Answer: The CDC and NIH would probably do what the insurance industry does. They would bring in senior physicians, who want a research grant who might say anything to receive a research grant. Plus, since most physicians believe M.E. (also known as Enteroviral Encephalomyelitis) and "CFS" are the same, and most physicians believe "CFS" is a minor psychological problem, they might not even have to pay them off.

Naming in research

Naming is also inconsistent in research criteria. This is partly because, as researchers study the disease and understanding improves, elements within the criteria also change.

The Canadian Consensus Criteria (CCC) and the Revised CCC use the term Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

"Criterias have also included the 1991 UK ”Oxford” report and the more well-known 2003 Canadian Consensus Criteria (CCC), that talks of M.E. (also known as Enteroviral Encephalomyelitis) and Chronic Fatigue Syndromes as though they were the same illnesses. THEY ARE NOT" - Byron Hyde, MD

The US Centers for Disease Control and Prevention (CDC) and the National Institutes for Health (NIH) both refer to the disease as ME/CFS, even when citing the Institute of Medicine’s 2015 criteria which called for a change of name to Systemic Exertion Intolerance Disease.

"Unfortunately the CDC did not accept or adopt the ICC, written by 26 experts in the field, and instead commissioned its own group with limited access to M.E. information, to create their vague 2015 IOM report, minimizing the disease yet again. This is the report most widely used and accepted throughout the world today (2022) [except of course for those countries and organizations that still use only “CFS”, or worse, also classify this “CFS” as a psychiatric condition, using euphemistic terms like Central Sensitisation Syndrome, or Functional Neurological Disorder" - Byron Hyde, MD

The International Consensus Criteria call the disease Myalgic Encephalomyelitis, while the Fukuda criteria refer to Chronic Fatigue Syndrome.

"The CCC was updated and replaced in 2011 by the International Consensus Criteria (ICC) which insisted that "CFS" should not be considered a diagnostic entity and that M.E. (also known as Enteroviral Encephalomyelitis) is a specific diagnosis requiring thorough patient history, examination, and testing" - Byron Hyde, MD

It is to be hoped that once an accurate and widely accepted biomarker of the illness is found, that certainty will at last be reflected in the name.

"The position of Nightingale Research Foundation is that the IOM does NOT describe or define M.E., and that the ICC, while far superior to the IOM, is still not specific enough. In creating the Nightingale Definition, we have studied decades of clinical evidence, and followed up on the work of Dr. Melvin Ramsay (case descriptions published 1986 and 1988), Dr. Elizabeth Dowsett, Dr. John Richardson, and others who closely studied M.E. patients and M.E. outbreaks over several decades. M.E. has a clearly defined disease process, while CFS by definition has always been a syndrome. In light of this state of affairs, the Nightingale Research Foundation created its 2007 Definition of M.E. and updated it in 2016" - Byron Hyde, MD

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The conflation of Myalgic Encephalomyelitis (M.E.) (also known as Enteroviral Encephalomyelitis) with Chronic Fatigue Syndrome (CFS) is arguably the single biggest institutional hurdle patients face. When M.E. - originally classified as a distinct neurological and enteroviral pathology akin to atypical poliomyelitis - was subsumed under the umbrella of "CFS" by the CDC in 1988, the focal point shifted from a multi-system, neuro-immune infection to a generalized symptom: "FATIGUE".

When looking specifically at Myalgic Encephalomyelitis (as an enteroviral enteroviral encephalomyelitis with a pathological overlap with a poliomyelitis-like syndrome affecting the spinal cord and brain), the crisis regarding emergency and inpatient medical services becomes even more acute.

​1. The Erasure of Neurological Diagnostics

Because acute hospital wards and emergency departments treat patients under the generic diagnostic lens of "fatigue" (CFS), they do not screen or monitor for the severe neurological manifestations of M.E.. In an emergency setting, this results in a catastrophic failure to recognize:

• Autonomic Instability: Dangerous, fluctuating shifts in heart rate, blood pressure, and body temperature regulation that are common in neuro-immune diseases but ignored under a "fatigue" label.

• Brainstem and Spinal Cord Pathology: M.E. involves neuro-inflammation. In emergency rooms, symptoms stemming from this inflammation - such as paralysis, severe light and sound intolerance, seizure-like episodes, or the loss of the swallow reflex-are often misdiagnosed as psychiatric distress, CFS, ME/CFS or functional neurological disorder (FND).

2. Inpatient Environments Are Actively Hostile to M.E. Pathology

​A patient with a neurological illness like M.E. requires a strict neuro-protective environment.

• The Stimulus Trigger: In M.E., the nervous system is locked in a state of hyper-reactivity. The sensory deluge of an emergency department (beeping monitors, fluorescent lights, shifting carts) acts as a physical assault on a compromised brain and spinal cord.

• The Relapse Trajectory: While a patient with a "fatigue" defined condition might just feel more "fatigued" from a noisy room, a patient with M.E. faces objective neurological degradation, cellular energy failure, and permanent functional decline when exposed to these environments.

3. The Dangerous Imposition of "Activation" Protocols

The most hazardous consequence of the M.E. and CFS conflation in hospitals is the therapeutic approach. If hospital staff believe a patient has "CFS" (historically misinterpreted as a behavioral condition or a state of deconditioning), the standard inpatient response is mobilization - forcing the patient to sit up, get out of bed, or engage with staff.

For a M.E. patient, forced physical or cognitive exertion during an acute crash is biologically catastrophic. It strips away what little metabolic reserve the central nervous system has left, often triggering total systemic collapse or organ-level failure (such as severe gastroparesis requiring emergency tube feeding).

The Underlying Crisis: By discarding the strict definition of Myalgic Encephalomyelitis as an enteroviral, polio-like neurological condition, medicine stripped these patients of their status as acutely ill neurological cases. Because hospitals do not recognize them as such, they lack the specialized, darkened, silent isolation rooms, stress reduction, sensory and stimulus reduction, autonomic neurological management, immune modulation, anti-inflammatory treatment for neuroinflammation and for perivascular cuffing surrounding the blood vessels, enteroviral antivirals and strict metabolic pacing protocols necessary to save the patient's live in a crisis.

When medicine conflated the neurological pathology of Myalgic Encephalomyelitis with "CFS," it fundamentally redefined the nature of the condition from an acute, structural, and physiological breakdown to a chronicle of "energy management."

The Outpatient Myth vs. Inpatient Reality

The "CFS" Conflation Model

Framed as an Outpatient Issue: Assumes the patient is ambulatory and living at home, needing advice on how to "pace" their day or manage their schedules.

Focuses on "Energy Management": Treats the body like a battery that drains too fast, implying the solution is careful scheduling, behavioral modification, or resting.

Consequences of Mismanagement: It's just a form of prolonged fatigue (the outpatient paradigm) that requires energy management and pacing. 

The M.E. Reality

Is an inpatient Emergency: Is a severe neuro-immune disease where patients can lose basic, involuntary bodily functions (like the ability to swallow, digest food, or maintain blood pressure).

Consequences of Mismanagement: The conflation with "CFS" minimizes the potential severity of over-exertion in "M.E.". In patients with "M.E.", physical or sensory overload can lead to marked clinical deterioration, worsening neurological and autonomic impairment, and serious medical complications. Although the condition itself can be life-threatening in circumstances, the primary concern is preventing further physiological destabilization, rather than by simply avoiding "FATIGUE and MALAISE".

Why This Puts M.E. Patients in Extreme Danger? 

Because the global medical system views these patients through the lens of a "CFS energy management crisis," acute hospital infrastructure for them simply does not exist.

When a M.E. patient deteriorates to the point of a medical emergency - such as severe gastroparesis (paralysis of the stomach) or a total breakdown of the autonomic nervous system - they are forced into standard hospitals. Because they are classified under the "CFS" umbrella, they face catastrophic consequences:

• Treated as "Deconditioned" Outpatients: A&E and ward staff often assume the patient has just "paced poorly" or become weak from staying in bed too long. They attempt to solve it with physical therapy or mobilization, which acts as a direct neurotoxic assault on an M.E. patient.

• Denial of Essential Life Support: Because "fatigue" is not considered life-threatening, hospital staff frequently fail to recognize when an M.E. patient is in actual organ or system failure. Crucial interventions-like early total parenteral nutrition (IV feeding) or absolute sensory isolation - are often delayed, denied, or dismissed as unnecessary accommodations for a behavioral issue.

• They are Entirely Different Patients: A person struggling with a syndrome characterized by "chronic fatigue" requires an entirely different clinical pathway than a person suffering from an enteroviral, polio-like neurological disaster.

By treating M.E. as an outpatient energy-management problem, the medical establishment has left severely affected M.E. patients completely homeless within the modern hospital system. Turn away a cardiac patient in a crisis and it's malpractice; turn away or mistreat an M.E. patient in a neurological crisis because "it's just CFS," and it's standard protocol.

The open-access paper (PMC10434940), titled "The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome," was authored by Dr. Maureen Hanson, a molecular biology professor at Cornell University (2023)

The above perspective targets a massive point of friction within the advocate and patient communities. The paper centers on the exact issue discussed: the history of how enteroviruses (such as atypical poliomyelitis) were historically sidelined after the "CFS" label was introduced.

The frustration many patients and advocates feel toward figures like Dr. Hanson - and the sentiment that her work is an attempt to "save her bacon" - stems from several systemic grievances:

​1. Perpetuating the Hybrid "ME/CFS" Terminology

While Dr. Hanson’s research explicitly focuses on the enteroviral, polio-like origins of the illness, her papers, grants, and center at Cornell still heavily utilize the slash-term "ME/CFS." 

For advocates who firmly demand that Myalgic Encephalomyelitis be completely divorced from the behavioral baggage and broad "fatigue" criteria of CFS, any continued use of the hybrid label is seen as a betrayal of M.E. history. 

To strict M.E. advocates, keeping "CFS" in the title feels like a political compromise to keep government grant money flowing from institutions like the NIH, which explicitly uses the "ME/CFS" umbrella.

2. The Backpedaling on Post-COVID Syndromes

The paper explicitly asks the question: "Should the post-SARS-CoV-2 infection syndromes be called 'ME/CFS'?" 

Long COVID brought an enormous influx of public attention and research funding to post-viral syndromes. 

Many establishment researchers rushed to group all post-viral conditions together. 

For M.E. purists, watching prominent researchers try to pivot or blend M.E. with Long COVID feels like an opportunistic move to secure fresh funding rather than defending the distinct, enteroviral, neurological boundaries of M.E.  

​3. Institutional Research vs. The Emergency Crisis

​As established, severe M.E. patients face immediate, life-threatening inpatient crises (such as severe gastroparesis, malnutrition, and paralyzing neuro-inflammation) because hospital protocols are broken. From a patient perspective, highly funded academic labs can feel vastly out of touch. Millions of dollars are spent on molecular sequencing and biomarker discovery, yet a severe M.E. patient entering an emergency room today faces the exact same psychiatric "gaslighting" and medical danger they did thirty years ago.

When researchers are seen as protecting their academic labs, publications, and institutional status while the actual clinical triage for dying patients remains completely unaddressed, it creates a deep rift. To many, it looks like academic self-preservation rather than a radical fight for the specialized inpatient care pathways that M.E. pathology demands.

This graphic from the paper explicitly uses the 2015 Institute of Medicine (IOM) core diagnostic criteria - which is fundamentally a re-branded, watered-down "CFS" symptom checklist, not the clinical profile of Myalgic Encephalomyelitis.

By overlaying enteroviruses (Coxsackie B, Echoviruses) and herpesviruses (EBV, HHV-6) on top of this specific symptom list, the paper attempts to link distinct viral pathologies to what is essentially an outpatient fatigue framework.

The Contrast: What this Graphic Shows vs. M.E.

• "Fatigue" vs. Neurological Muscle Failure: The graphic puts "Fatigue" front and center. M.E. (as defined by Melvin Ramsay and historical outbreaks) is characterized by an absolute, profound post-exertional muscle failure and distinct central nervous system damage, not a 'generalized' state of 'FATIGUE'. 

• The Core Symptoms Listed Are Diluted:
• ​Unrefreshing sleep
• ​Cognitive impairment
• ​Orthostatic intolerance While these occur in M.E., using them as the primary diagnostic pillars strips away the defining neurological features of M.E., such as distinct cardiac and circulatory dysfunction, severe hyperacusis and photophobia, paroxysmal tachycardia, and cranial nerve disturbances.

• The "Any Post-Viral Fatigue" Catch-All: The IOM criteria shown in this bed illustration were explicitly designed to be broad and easy for general practitioners to use. The consequence is that anyone with prolonged post-viral fatigue from Epstein-Barr Virus (mononucleosis) or a tough recovery from another infection gets swept into this bucket.

Why This Conflation Matters for the Paper's Credibility? 

When researchers like Dr. Hanson use this specific graphic and criteria, they are trying to have it both ways, and "save their bacon." They want the scientific prestige and historical gravity of an enteroviral, polio-like illness (M.E.), but they use the broad, politically safe, NIH-endorsed IOM 'SEID' criteria (CFS) which defines a miscellaneous fatigue-defined cohort with a non-diagnostic algorithmic umbrella that M.E. (also known as Enteroviral Encephalomyelitis) or Enteroviral Encephalitis is excluded from under, "consider another diagnosis" as an 'acute onset' diagnosable inpatient medical emergency. 

If a research study selects its patients using the broad criteria shown in this bed graphic, they aren't studying a clean cohort of Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis) patients. They are studying a mixed, 'heterogeneous population' of people with various forms of 'chronic fatigue'. This dilutes the science, obfuscates the specific enteroviral pathology of M.E., and keeps the medical community locked into treating a severe neurological disease as an outpatient energy-management problem.

It is absolute clinical chaos to group patients this way, and calling it "bonkers" is an understatement - it’s bad medicine.

​By using that broad symptom checklist, researchers are essentially grouping patients by downstream symptoms rather than upstream etiologies (causes).

The Melting Pot of Completely Different Pathologies

• Autonomic Dysfunction (Dysautonomia): Orthostatic intolerance is a failure of the autonomic nervous system. But you can get 'dysautonomia' from an autoimmune attack, direct physical trauma to the vagus nerve, a small fiber neuropathy, genetic connective tissue disorders like Ehlers-Danlos Syndrome (EDS), or a post-viral brainstem insult. Lumping them together because their heart rates spikes or because their blood pressure drops when they stand up is like putting everyone with a "cough" into the same treatment room.

• Cognitive Impairment: Brain fog and cognitive deficits can be caused by microclots and prothrombotic disorders, a whole manner of encephalopathies, traumatic brain injury, localized neuro-inflammation, cerebral hypoperfusion (lack of blood flow to the brain), autoimmune disease, strokes, neurodegenerative conditions, vascular dementia, vitamin deficiencies, sleep disorders (e.g. severe sleep apnea), medication effects, depression, or by a whole manner of other causes. These involve vastly different biological mechanisms, yet this checklist treats them as identical.

• Unrefreshing Sleep: Waking up feeling completely unrecovered is a hallmark symptom that is frequently treated as a single entity, yet it is driven by completely distinct biological failures. It can be caused by alpha-delta sleep intrusion (where awake-type brain waves disrupt deep, restorative sleep), autonomic nervous system dysfunction (such as a high nighttime heart rate and failure to enter a parasympathetic "rest and digest" state), localized neuro-inflammation and cytokine activity that alters sleep chemistry, mitochondrial or cellular energy depletion that prevents overnight tissue repair, or comorbid primary sleep disorders like Upper Airway Resistance Syndrome (UARS) and central sleep apnea. Lumping these together under a single symptom checklist ignores the fact that a treatment that calms the nervous system, will do absolutely nothing for someone whose airway is physically collapsing at night.

• Small Fiber Neuropathy (SFN): SFN involves actual structural damage to the peripheral nerve fibers and can cause severe autonomic failure and pain. SFN can be driven by diabetes, autoimmune diseases like Sjögren’s, infectious or specific neurotoxic exposures, or by other causes. Shoving Small Fiber Neuropathy patients into a generic "CFS" bucket completely ignores their distinct nerve pathology.

• The "Profound Fatigue" Catch-All: Fatigue can be neurological, metabolic, immune mediated and autoimmune, mitochondrial, infectious, and as a result of direct infectious insult, toxic, vaccine injury-related, structural, maligant, endocrine, psychological, or genetic. 

Why This Destroys Research and Hurts M.E. Patients? 

​When an academic study recruits a cohort based on the "bed graphic" criteria, they are inadvertently creating a heterogeneous soup of completely different diseases.

1. It Dilutes the Data: If only 15% of the study's cohort has enteroviral Myalgic Encephalomyelitis (atypical polio) and the other 85% have various other forms of post-viral fatigue, SFN, or autoimmune dysautonomia, any distinct biological signal for M.E. will be completely washed out in the final data. 
2. It Leads to "Inconclusive" Results: This is why, after decades of research and millions of dollars, these large-scale institutional studies constantly conclude with: "Further research is needed, results are heterogeneous." They are trying to find a single biomarker for many different illnesses at the same time.
3. It Prevents Specialized Inpatient Triage: Because the medical establishment sees this lumped-together group as the baseline, they assume the entire cohort just needs general outpatient management for their overlapping symptoms. They completely miss the critically ill M.E. patient whose central nervous system is undergoing an acute enteroviral crisis and who requires immediate, specialized, protective inpatient immobilization.

​By abandoning the strict, historic definition of M.E. as a specific enteroviral, polio-like neurological disease, medicine traded diagnostic precision for a giant, unscientific bucket. It allows institutions to look like they are doing comprehensive research while actually obfuscating the distinct, severe pathology of "Myalgic Encephalomyelitis" (also known as Enteroviral Encephalomyelitis) M.E.

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This "Chronic Fatigue Syndrome" CPD module essentially teaches clinicians an untruth, 'disinformation' and Dr. Nina Muirhead is the leading author of this 'disinformation' and is so clearly a grossly 'negligent doctor' who shouldn't be anywhere near any 'guideline committee' for "nomenclature" involving "Myalgic Encephalomyelitis" within it's title (also known as "Enteroviral Encephalomyelitis") M.E.. 

Muirhead is a hijacker doctor, con-artist and charlatan of the highest order, among quack doctors. 

Dr. Nina Murhead's CPD module on "Chronic Fatigue Syndrome, erroneously being labelled as ME/CFS"

"ME/CFS is no longer a "diagnosis of exclusion". Patients should be reviewed regularly and new symptoms investigated as they would normally. ME/CFS, long COVID, Lyme disease, endometriosis, fibromyalgia, PoTS (postural tachycardia syndrome), MCAS (mast cell activation syndrome), and other autoimmune and connective tissue diseases can often be recognised and diagnosed" - Dr. Nina Muirhead

'Chronic Fatigue Syndrome' is most definitely a "diagnosis of exclusion" so that is a lie in stating it's no longer exactly how it's currently categorised, whether it's 'erroneously' labelled as 'ME/CFS' or simply called 'Chronic Fatigue Syndrome'. It is a "misdiagnosis" and based on a 'short' symptom-based algorithm, leading with 'profound fatigue' and is very much a "diagnosis of exclusion'. This kinda 'dishonesty' and 'gaslighting' is unreal but you 'can expect' this kinda 'dishonesty' by many with a 'Dr.' before their name, or 'MD' after their name. Muirhead shouldn't be within 50 feet of any 'actual' M.E. (also known as "Enteroviral Encephalomyelitis") NHS guideline, in the future. She is a quack doctor. She has chosen to support the 'bogus construct' of 'CFS' by attaching her name to it, so can go 'f' right off. 

"Both ME/CFS and long COVID often do not present with FATIGUE; patients may complain of a plethora of multisystem symptoms, including non-specific viral symptoms that reduce the ability to work, study or care for others and themselves. Taking a good history is paramount, particularly whilst we await more accurate and readily available clinical biomarkers. Research is revealing a variety of patient-specific biomarkers and genes that may predispose them to developing ME/CFS" - Dr. Nina Muirhead

The 2015 'SEID - 'ME/CFS' Algorithm, which literally leads with PROFOUND FATIGUE and the 2021 NICE ME/'Chronic Fatigue Syndrome' guidelines are as 'dangerous' as were the last, and an 'administrative fudge' which does everyone an injustice, and is especially dangerous for 'M.E.' (also known as Enteroviral Encephalomyelitis) patients, who are 'excluded' anyway, and who are left and abandoned with no NICE clinical guideline. 

INSTITUTIONAL COVER-UP & BETRAYAL

So what in the hell, is Muirhead even talking about? Muirhead is suffering from some kinda 'cognitive dissonance' because in cases of "M.E." (also known as "Enteroviral Encephalomyelitis") it does not always lead with FATIGUE as 'the prominent or most important symptom, and may not even be present at all' but in relationship to, so-called 'Fatigue Syndromes' it may be the prominent symptom, considering the nomenclature of 'Fatigue Syndrome'. 

M.E. is an 'acute onset' brain and spinal cord infection by an enterovirus, which is diagnosable upon onset and warrants emergency inpatient hospitalisation, and is very much 'excluded' from bogus 'CFS' criterias as a result. 

Muirhead is outright complicit in this medical conflation, creating 'ME/CFS' medical modules for the NHS is a promotion of this "M.E." (also known as Enteroviral Encephalomyelitis) and "CFS" criteria dangerous conflation paradigm. 

Muirhead is a spreader of 'medical disinformation' and 'institutionally captured' as an NHS doctor. 

If as a doctor mindlessly regurgitating and parrotting what official institutions promote, even when it's wrong and does not make goddamn sense, and inspite of conflicting more accurate information, then you are 'institutionally captured' and not a reliable source of credible information.

"Very recent breakthroughs in this field include research based on DecodeME, which is starting to map reproducible genetic risk patterns and shared biology with long COVID. Endocrine meta-analyses show a hyporeactive cortisol system in ME/CFS. Cerebrospinal fluid proteomics and cytokine signatures strengthen the case for immune, vascular, and coagulation involvement, especially in more severe disease and PoTS subgroups" - Dr. Nina Muirhead

DecodeME inspite of the name is a 'Chronic Fatigue Syndrome' criterias, SEID and CCC study and NOT an 'M.E.' (also known as Enteroviral Encephalomyelitis) study.