The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

The terminology and definitions of M.E. and 'CFS'  explained

In short:

  • M.E. is not the same thing as 'CFS,' 'ME/CFS' or fatigue
  • M.E. is not medically unexplained, vague, fatigue-based or untestable
  • A diagnosis of 'CFS' is always a misdiagnosis
  • 'CFS' is a bogus disease category created for the benefit of vested interest groups
  • Everyone diagnosed with 'CFS' deserves a correct diagnosis finally - whether the disease they have is M.E. or, as is far more likely, something else entirely

 

When the terms CFS, CFIDS, ME/CFS, CFS/ME, Myalgic Encephalopathy or ME-CFS are used what is being referred to may be patients with/facts relating to any combination of:

1. Miscellaneous psychological and non-psychological fatigue states (including somatisation disorder) 2. A self limiting post-viral fatigue state or syndrome (eg. following glandular fever/mononucleosis.) 3. A mixed bag of unrelated, misdiagnosed illnesses (each of which feature fatigue as well as a number of other common symptoms; poor sleep, headaches, muscle pain etc.) including Lyme disease, multiple sclerosis, Fibromyalgia, athletes over-training syndrome, depression, burnout, systemic fungal infections (candida) and even various cancers 4. Myalgic Encephalomyelitis patients (despite the fact none of the 'CFS' definitions describes M.E., many M.E. sufferers are given a CFS misdiagnosis due to the political environment and ignorance surrounding M.E.).

It is important to be aware that Myalgic Encephalomyelitis and 'CFS' are not synonymous terms and should not be used interchangeably, and that 'fatigue' is not a defining nor even essential feature of M.E. M.E. is defined by a variety of serious (testable) neurological, cardiac, cardiovascular, metabolic and other abnormalities - not by mere 'fatigue.'

Myalgic Encephalomyelitis is a distinct, scientifically verifiable and measurable, acute onset, organic neurological disease. CFS in contrast, is not a distinct disease. CFS doesnt exist. Every diagnosis of CFS based on any of the CFS definitions can only ever be a misdiagnosis.

CFS was created in the 1980s in the US in response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist. The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has Myalgic Encephalomyelitis (M.E.), and (b) does not mean that the patient has any other distinct and specific illness named CFS. 

The bogus disease category of CFS has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with psychiatric fatigue states and various unrelated fatigue syndromes for the benefit of insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.

The terminology is often used interchangeably, incorrectly and confusingly. However, the DEFINITIONS of M.E. and CFS are very different and distinct, and it is the definitions of each of these terms which is of primary importance. The distinction must be made between terminology and definitions.

  • People with chronic fatigue may be tired because of cancer, Multiple Sclerosis, vitamin deficiency, a sleep disorder, depression or a large number of other reasons. Fatigue or chronic fatigue is a symptom of many illnesses. Up to 20% of the population may currently suffer from some form of chronic fatigue.

  • Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as CFS is medically unexplained. A diagnosis of CFS does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with CFS is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a CFS (mis)diagnosis.  Every diagnosis of CFS can only ever be a misdiagnosis. 

  • Myalgic Encephalomyelitis is not merely a symptom, or a syndrome, but is instead a distinct disease. It has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disease with the code G93.3. Myalgic Encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by damage to the brain stem (a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions) which results in dysfunctions and damage to many of the bodys vital systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.

M.E. is primarily neurological, but symptoms may also be manifested by cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. More than 64 distinct symptoms have been authentically documented in M.E., several of which are unique to the disease. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely fatigued instead of having M.E.

M.E. can occur in both epidemic and sporadic forms and over 60 outbreaks of the illness have been recorded worldwide since 1934. M.E. can be extremely disabling and in some cases the illness is fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

The only thing that makes any sense is for patients with M.E. to be studied ONLY under the name Myalgic Encephalomyelitis and for this term ONLY to be used to refer to a 100% M.E. patient group The only correct name for this illness M.E. as per Ramsay/Richardson/Dowsett and Hyde, and the 60+ outbreaks of M.E. recorded worldwide, and so on is Myalgic Encephalomyelitis.

M.E. is not synonymous with CFS, nor is it a subgroup of CFS. (There is no such thing as a subgroup of CFS; there is no such disease/s as "CFS.) M.E. is not a primarily fatiguing condition, nor is it a wastebasket diagnosis or medically unexplained as CFS is. Sub-grouping different types of CFS, refining the bogus CFS definitions further or renaming CFS with some variation on the term M.E. would achieve nothing and only create yet more confusion and mistreatment.

The problem is not that CFS patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as CFS that is the entire issue, and the vast majority of patients misdiagnosed with CFS do not have M.E. and so have no more right to that term than to cancer or diabetes.

There is no such disease as CFS that is the entire issue. The vast majority of patients misdiagnosed with CFS do not have M.E. The only way forward, for the benefit of society and all patient groups involved, is that:
 
1. The bogus disease category of CFS must be abandoned completely.

2. The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy. 
 

The bogus disease category of CFS must be abandoned (along with the use of other vague and misleading umbrella terms such as ME/CFS, CFS/ME, 'ME-CFS, CFIDS,  Myalgic Encephalopathy' and others), for the benefit of all patient groups involved.  Science, logic and ethics must prevail over mere financial and political concerns. 

Governments around the world are currently spending $0 a year on M.E. research. Considering the brutal severity of the illness, and the vast numbers of patients involved, this is a worldwide disgrace. How much longer will the world be fooled by the paper-thin CFS scam, which has been clearly proven to be merely financially motivated?  The fiction of CFS represents outright medical fraud, involving serious medical abuse and neglect of patients, on a truly massive scale.

For more information on this topic, see the papers below, or the video links below:


A new paper is available: CFS' and M.E. comparison chart co-authored by LK Woodruff

This clearly chart illustrates the many differences between CFS and M.E. 

 

As this chart shows, despite what many groups claim, CFS and M.E. are not the same.


Who benefits from 'CFS' and 'ME/CFS'?

For whose benefit was Chronic Fatigue Syndrome created, and for whose benefit is it so heavily promoted despite its utter lack of scientific credibility? Who benefits from Myalgic Encephalomyelitis and CFS being mixed together through unscientific concepts such as CFS/ME and ME/CFS and Myalgic Encephalopathy? Who benefits from the facts of M.E. remaining ignored, obscured and hidden in plain sight?

This paper looks at all of these very important questions.

This paper was co-written and edited by Lesley Ben.


A warning on CFS and ME/CFS research and advocacy (co-authored by Lesley Ben)

Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are not synonymous terms. The overwhelming majority of research on CFS or CFIDS or ME/CFS or CFS/ME or ICD-CFS does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all CFS labelled research as only relating to CFS patients (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that CFS is just a watered down definition of M.E. and that M.E. and CFS are virtually the same thing and share many characteristics.

A very small number of CFS studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. This paper includes a checklist to help readers assess the relevance of individual CFS studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.


Problems with the so-called "Fair name" campaign: Why it is in the best interests of all patient groups involved to reject and strongly oppose this misleading and counter-productive proposal to rename CFS as ME/CFS

At first glance the idea that the name CFS is the cause of so much harm and misunderstanding seems so obvious as to not even merit further discussion. It seems so logical that one of the first things that patients given this diagnosis must do is campaign hard to have the name CFS changed to something far more serious sounding and more appropriate.

But the problem is that it only appears that way if you dont have all, or indeed ANY, of the facts. When you finally do, you quickly become aware of what a sham the idea of renaming CFS really is and how it will make things so much WORSE for all the different patient groups involved.

Please read this information on the US so-called Fair Name campaign carefully. Dont let yourself be the unwitting tool of unethical insurance companies through ignorance! new


Why the disease category of CFS must be abandoned

M.E. and 'CFS' are not the same. This paper discusses why renaming, refining or sub-grouping 'CFS' cannot work and why 'CFS' must be abandoned. new

  • The paper: Why CFS must be abandoned: Extra features comments from other members of the M.E. community which also explain why renaming, refining or sub-grouping 'CFS' cannot work and why 'CFS' must be abandoned, (and why Myalgic Encephalomyelitis must remain the name used only for Myalgic Encephalomyelitis patients) and so on. 

The misdiagnosis of CFS

None of the definitions of CFS defines M.E., so what do they define? What does a diagnosis of 'CFS' actually mean?

See also: Where to after a 'CFS' (mis)diagnosis? 


Problems with the use of 'ME/CFS' by M.E. advocates

This paper looks at why it is not in our best interests as M.E. patients and advocates to use or support the use of 'ME/CFS.'


What is M.E.? and What is M.E.? Extra extended version

This paper looks at the definition of terms such as ME/CFS CFS/ME 'ME-CFS' 'CFIDS' and 'Myalgic Encephalopathy' as well as the term ICD-CFS, and provides an overview of many issues relating to M.E. and the difference between M.E. and 'CFS.'

An excerpt:

What does the term ICD-CFS mean?

The various definitions of CFS do not define M.E. Myalgic Encephalomyelitis is an organic neurological disorder as defined at G.93.3 in the World Health Organizations International Classification of Diseases (ICD). The definitions of CFS do not reflect this. The CFS definitions are not watered down M.E. definitions, as some claim. They are not definitions of M.E. at all.

However, ever since an outbreak of M.E. in the US was given the label CFS, the name/definition CFS has prevailed for political reasons. CFS is widely though wrongly applied to M.E. as well as to other diseases.

The overwhelming majority of CFS research does not involve M.E. patients and is not relevant in any way to M.E. patients. However, a very small amount (a minuscule percentage) of research published under the name CFS clearly does involve a significant number of M.E. patients as it details those abnormalities which are unique to M.E. Sometimes the term ICD-CFS is used in those studies and articles which, while they use the term CFS, do relate to some extent to authentic M.E. General problems with the term ICD-CFS include the following:

1) The main problem is that the term ICD-CFS implies that CFS has a WHO ICD classification as a neurological disease. CFS has no ICD listing as a neurological disease. Indeed, in the version of the ICD in use in most of the world, CFS has no classification at all. Myalgic Encephalomyelitis was classified as a distinct neurological disease in the WHO ICD in 1969 based on a large body of compelling scientific evidence. To imply that CFS research and the definitions of CFS have been properly evaluated by the WHO and classified as neurological is erroneous. Of course CFS can never be classified as a neurological illness because none of the CFS definitions define a neurological disease, or any distinct disease.

2) It is also erroneous to imply that the WHO has deemed CFS to relate to Myalgic Encephalomyelitis in any way. The term ICD-CFS incorrectly suggests that CFS and M.E. are synonymous terms for a single entity.

3) The term also implies a lack of scientific rigour in the ICD, suggesting that definitions as vague and as problematic as those of CFS would be accepted by the WHO as the basis for a neurological classification. If this were to be believed, it would weaken the authority of Myalgic Encephalomyelitiss ICD classification.

4) In addition to its use in relation to research, some people use the term ICD-CFS to refer to the disease generally. The term is usually used by people who are aware of the psychological paradigm of CFS, and who want to indicate a real, biological disease rather than a psychological one. However, which exact disease or diseases are being referred to with this term varies considerably from one author to another. As with terms such as ME/CFS the term ICD-CFS only increases confusion as it has no agreed definition and many different groups use it to refer to very different, often very mixed, patient groups.

 

The overwhelming majority of CFS research does not involve M.E. patients and is not relevant in any way to M.E. patients. A small number of CFS studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. Unless studies are based on an exclusively M.E. patient group, results cannot be interpreted and are meaningless for M.E. Thus while it is important to be aware of the small amount of research findings that do hold some value for M.E. patients, using the term ICD-CFS to refer to this research is misleading and in many ways just damaging as using terms and concepts like ME/CFS or CFS/ME.

  • For more information about the WHO classifications of M.E. and CFS worldwide please see the articles by patient advocate LK Woodruff. For further details of the WHO ICD classifications of M.E. and CFS worldwide please see the new paper on WHO ICD Classifications by Lesley Ben, coming soon.
  • Virtually all of the research which does relate to M.E. (at least in part) but which uses the term/concept of CFS (or ME/CFS, or CFIDS etc.) is also contaminated in some way by CFS misinformation. Most often these papers contain a bizarre mix of facts relating to both M.E. and CFS. For more information on some of the most common inaccuracies and CFS propaganda included in this research, see the paper: Putting Research and Articles on Myalgic Encephalomyelitis into Context

For more information on the differences between M.E. and 'CFS' see also:

  The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List

  Myalgic Encephalomyelitis: The Medical Facts

  Putting Research and Articles on ME into Context

  Testing for Myalgic Encephalomyelitis 


Smoke and mirrors 

This paper looks at the lack of evidence (and financial and political motivations) behind the 'behavioural' model of M.E. and outlines a strategy for the resolution of the confusion caused by the 'CFS' disease category.


Myalgic Encephalomyelitis is not fatigue, or 'CFS' 

This paper explains why M.E. is not defined by mere 'chronic fatigue' and why M.E. and 'CFS' are not synonymous terms, as well as why a diagnosis of CFS based on any of the definitions of CFS can only ever be a misdiagnosis.

For more information on the incorrect use of the term 'fatigue' in relation to M.E., see also*:

  • Fatigue Schmatigue which includes the papers Energy Schmenergy and If not fatigue then.. what?

(*Note that these three papers are designed specifically for members of the M.E. community, rather than the general public.)

Relevant video: The misdiagnosis of 'CFS'

Relevant video: The 'ME/CFS' concept is unhelpful

Relevant video: What is M.E.? (1 page version)

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Exciting book news!

Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95