CHRONIC FATIGUE SYNDROME and SYNDROMES (Currently erroneously being labelled "ME/CFS") - PART 2 - WORK IN PROGRESS
THE FATIGUE STATES (RESEARCH DEFINITIONS 1988-2015)
The US Centers for Disease Control and Prevention (CDC) first defined Chronic Fatigue Syndrome, 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".
and the more well-known 2003 Canadian Consensus Criteria (CCC), that talks of "M.E." and "CFS" as though they were the same illness. THEY ARE NOT.
M.E. Definition Booklet, September 2011, by Byron Hyde, MD
"At the first meeting on the 27th of October 2005, the Chairman of the Joint Committee, Dr. Ian Gibson, asked me to prepare a report and definition that might assist the committee in its further deliberations. The following are my original recommendation. Dr. Bruce Carruthers, who chaired the 2003 Canadian Clinical Case Definition for ME/CFS, was also present when I gave this definition. I strongly disagreed with Dr. Carruthers in the merging of the definitions of M.E. and CFS since on basis of the physical total body assessment of both M.E. and CFS patients; these two names represent two entirely different spectrums of illnesses. The present 2016 definition is confined to the defining of Myalgic Encephalomyelitis (M.E.). The term CFS is mentioned from time to time to clarify differences.
It is increasingly obvious that too much importance was being placed upon the definitions of Chronic Fatigue Syndrome (CFS), and not enough upon the actual disease, Myalgic Encephalomyelitis (M.E.). These two illness spectrums are not the same and shouldn't be considered the same. Nor is there any doubt in my mind that the various definitions of CFS actively impede physicians' ability to make a rapid and rational diagnosis as well as a scientific confirmation of any testable illness. Such is not true of M.E. where a rapid and rational diagnosis can be confirmed by laboratory and other technological testing."
"In my 27-year investigation of M.E. and CFS patients, I can state with clarity that there is less psychiatric among M.E. or CFS patients than in the general public"
"Garbage Bag Disease: Unfortunately, many physicians appear to be using CFS (currently erroneously labelled ME/CFS) as a convenient garbage bag disease, simply telling patients whom they have no time to investigate, "Oh, you have Chronic Fatigue Syndrome". It is most unfortunate that the Americans, who have now promoted the idea that CFS is the same as M.E. have only compounded the disaster. Due to this garbage bag phenomena mentality many CFS patients are never properly investigated for serious disease and most CFS patients have significant and often treatable pathologies."
"This document is an excellent and timely antidote to the scientifically unsupportable ICC - the latest unhelpful CFS redefinition being endlessly promoted by "ME/CFS" advocates - and so is highly recommended by HFME" - Jodi Bassett
2003 Canadian Consenus Criteria (CCC) for the erroneous concept of ME/CFS - MEPedia
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." is a specific diagnosis requiring thorough patient history, examination, and testing.
Unfortunately the CDC did not accept, or adopt the ICC, written by 26 experts in the field, and instead commissioned it's 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 (2025).
"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 Sensitivity Syndrome" or "Functional Neurological Disorder."
In those countries which have adopted mass polio immunisation during the past 30 years, outbreaks of M.E. still continue unabated. Interest in one such epidemic (Lake Tahoe, Nevada USA 1984) misdiagnosed initially as Epstein-Barr and Glandular Fever - a Herpes virus infection, led a group of non-clinical scientists active in the field of Herpes virus research, and evaluation of drugs, to formulate and tailor a fitting new research definition (Holmes et al 1988).
Infectious Mononucleosis (Mono) (also known as "Glandular Fever" within the United Kingdom) - Cleveland Clinic
Diagnostic Evaluation of Mononucleosis-Like Illnesses
Clinicians face a diagnostic challenge when a patient with the classic fever, pharyngitis, and lymphadenopathy triad of infectious mononucleosis has a negative "spot" heterophile antibody test.
Enteroviruses (Coxsackieviruses/ECHO viruses) are listed in Table 2 - Diseases with Presentations Suggestive of Infectious Mononucleosis
We describe a severe multisystem Coxsackie virus type B3 infection in a previously healthy 14-year-old girl who presented with a mononucleosis-like syndrome (MS). Initial observations included a prominent cervical lymphadenopathy, exudative pharyngitis and leucocytosis with atypical lymphocytosis. At the end of the 2nd week of illness the patient developed "meningoencephalomyelitis" (also known as "Myalgic Encephalomyelitis") and haemolytic anaemia. Subclinical myocarditis was also recorded. Prolonged hepatitis recrudescing at the time of recovery coincided with serological evidence of a reactivated Epstein-Barr virus infection. The diagnosis was based on a significant rise in serum antibody titres against Coxsackie virus type B3, using the neutralization test. Intrathecal synthesis of antibodies to Coxsackie virus type B3 was also demonstrated. Generalized Coxsackie virus infections in adolescence are rare and an MS has not, to our knowledge, been associated with Coxsackie virus type B3 infection.
EPIDEMIC MYALGIC ENCEPHALOMYELITIS (also known as "Enteroviral Encephalomyelitis") M.E.
The *exclusion* or downgrading of many characteristic M.E. symptoms led to an unreal emphasis on psychiatric explanations, and *altered* estimates of the true prevalence.
Attempts to correct this initial "FATIGUE" definition in the UK (Sharpe et al 1991) the USA (Fukada et al 1994) and in Australia (Hickie et al 1995) became *so inclusive of a *heterogeneous population* of sufferers from *psychiatric* and miscellaneous non-psychiatric fatigue states, as to elevate the suggested prevalence of M.E. by many times over.
Major mistakes in these "CFS definitions" include:
(1) Overlooking the distinguishing "Encephalitic" features of M.E. (also known as "Enteroviral Encephalomyelitis")
(2) Elevating "FATIGUE" an inescapable accompaniment of normal human existence, and of infective, cardiovascular, metabolic, malignant, psychiatric, neurological, endocrine and other disabling conditions to *unreal* diagnostic importance among M.E. symptoms.
(3) To suggest that M.E. is merely one subgroup amongst this *heterogenous collection of physiological, and pathological fatigue states*, makes any attempt at differential diagnosis between M.E. and these miscellaneous Fatigued States, more difficult, due to this *conflation*, and inevitably leads onto *Diagnostic Confusion*.
(4) To suggest that diagnosis must be delayed for 6 months, violates any real attempt at virus investigation, especially among the young.
"CHRONIC FATIGUE SYNDROME" and it's DEFINITIONS
It has to be remembered that these "FATIGUE" CRITERIAS were devised specifically "FOR RESEARCH", NOT clinical purposes.
"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."
“In our experience the diagnosis of CFS only means the investigating physicians have not thoroughly investigated the patient. We routinely find in US, Canadian and European CFS patients diagnosed by physicians in their country, a variety of missed diseases. These include: [INFECTIOUS], toxic & chemical injuries, genetic injuries, cardio and cardio-vascular injuries, collagen diseases, adverse medication reaction, mitochondrial disease, adverse immunization caused illness, Ehlers-Danlos Syndrome, rarely M.S., missed thyroid malignancy and thyroid diseases. CFS in general implies a serious missed disease. I have found up to 20 significant pathologies in a single CFS patient, none of them caught by any physician. Yet they are diagnosed as CFS.” - Byron Hyde, MD
"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", "anxious" 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.
The 1994 Fukuda Criteria, 2003 Canadian Consenus Criteria and 2015 SEID Algorithm (Currently erroneously labled "ME/CFS") are criterias being used to label patients with, who have "unexplained" illnesses defined by Chronic or Pround Fatigue, in substituition for *thorough* clinical investigation of each patient in discovery of their actual clinical diagnosis. So the CDC and NICE have adopted them, for clinical purposes as they cannot be bothered to actually investigate these patients FULLY and THOROUGHLY and have hung them out to dry with NO DIAGNOSIS.
They are a group of insufficiently investigated patients by the medical profession, who have been abandoned, and neglected, along with M.E. patients, who have been systematically GASLIT with criterias; intended to INVALIDATE them, and GASLIGHT them with.
"Fatigue", "Fatigability" or "Loss of, or Lack of Energy" are often signaled as core symptoms; in many patients given the label of "Chronic Fatigue Syndrome". Currently *erroneously* being labaled as "ME/CFS". Chronic Fatigue Syndrome patients are often compared to: patients with batteries that are running low, or dead.
This has NOTHING to do with "Myalgic Encephalomyelitis" (also known as "Enteroviral Encephalomyelitis") M.E. patients. Entirely different patient groups.
M.E. patients defining symptom is: Post-Exertional "Muscle Fatigability"; followed by "Motor Weakness" and NOT by "FATIGUE", and a "LOST OF ENERGY". M.E. is an *acute onset* Polio-like Neurological, and Vascular-associated Disease.
"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. 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 definitions, patients who conform to any of the CDC, Oxford, Australian and Canadian CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable" - Byron Hyde, MD
"Although the authors of these definitions 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 definitions have another curiosity. If in any CFS patient, any major organ or system injury or disease is discovered, the patient is removed from the definition. The CFS definitions 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
Explanatory Diseases, Injuries and Pathologies are *EXCLUDED* by the manner, in which these UNEXPLAINED FATIGUE STATE criterias are written and CONSTRUCTED. They seem purposely designed to GASLIGHT and to keep people *TRAPPED* in A NEVER NEVER LAND with no actual answers, and with no actual thorough clinical investigations, or medical evaluations, to discover, what in the hell... is wrong, with this group of patients? So no suitable management, nor treatment as a result. It's NOT Myalgic Encephalomyelitis (also known as "Enteroviral Encephalomyelitis") because M.E. is *EXCLUDED* from the FATIGUE STATE criterias, considering it's an identifiable "acute onset" "Encephalomyelitis" caused by an "Enterovirus" and ONLY by an "Enterovirus". So it's not too difficult, to pin M.E. down.
You can't really confuse an "acute onset" Polio-like, M.S.-like, and Stroke-like "Encephalomyelitis" by an "Enterovirus", with an Unexplained FATIGUE SYNDROME.
IOM's 2015 SEID algorithm out right says; "Consider Another Diagnosis" through the non-diagnostic algorithm, if an identifiable disease is found, which can explain, the four or five, short checklist symptoms. So Ron Davis' SEID (Currently erroneously being labeled "ME/CFS") is NOT even a medical diagnosis but a non-diagnosis of exclusion algorithm, for an unexplained *FATIGUED PATIENT* being left in limbo, without any actual medical diagnosis.
"There is NO SUCH THING has ME/CFS" - Byron Hyde, MD
The DecodeME study is *false advertising through misrepresentaion* and is a "Chronic Fatigue Syndromes" study, who uses the 2003 Canadian Consenus Criteria (CCC) and IOM's 2015 SEID Algorthim and should really be called "DecodeCFS - The CFS Criterias DNA Study". The 2016 Nightingale Research Foundation Defintion for M.E., and 2011 International Consenus Criteria, which is currently the Closest Symptom-based Criteria to M.E. wasn't even adopted for this trial. I have no idea why Chris Pointing is claiming it's the world's biggest genetic study on M.E.. It has absolutely nothing to do with M.E. and is a study on people with *UNEXPLAINED* "Chronic Fatigue Syndromes". This is a completely seperate patient group. The DecodeME Study is NOT even studying a *specific* M.E. group.
The trial has absolutely nothing to do with Epidemic Myalgic Encephalomyelitis (also known as "Enteroviral Encephalomyelitis") M.E. patients.
The 12th of May is Chronic Immunological and Neurological Diseases (CIND) Awareness Day and NOT specifically "Myalgic Encephalomyelitis Awareness Day" (The day is named after Florence Nightingale's Birthday, who has been said to have suffered from a chronic disability caused by Chronic Brucellosis (One of the "MISSED" Chronic Fatigue Syndromes), and NOT from a disability caused by Myalgic Encephalomyelitis - also known as Enteroviral Encephalomyelitis - M.E.)
Contributions also from the works of Dr. Byron Hyde and Dr. Elizabeth Dowsett
By Larrin Carney (M.E. Patient, Sufferer & Survivor) - Historical M.E. Investigator
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