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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 by default).
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.
- Myalgic Encephalomyelitis
is a systemic acquired illness initiated by a virus infection which is characterised by (scientifically measurable) damage to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. The onset of M.E. is always acute. M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can always be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct. M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that affects adults and children. Fatigue is not a defining symptom of M.E., nor even an essential symptom of M.E. There are more than 64 M.E. symptoms. People with M.E would give anything to instead only be severely ‘fatigued’ or tired all the time.
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Chronic Fatigue Syndrome is a man-made construct created in the US in 1988. It is not a distinct disease, but a mere diagnosis of exclusion based on the presence of the symptom of fatigue. CFS cannot be diagnosed until after 6 months have passed. If serious abnormalities are found on testing, a person no longer qualifies for a diagnosis of ‘CFS.’ (The fatigue in ‘CFS’ is ‘medically unexplained.’) The onset of ‘CFS’ may be gradual or acute. A diagnosis of ‘CFS’ does not mean that a person has any distinct disease, including M.E. In essence, every diagnosis of CFS can only ever be a misdiagnosis. ‘CFS’ is made up of people with a vast array of unrelated psychological and non-psychological illnesses with little in common but the symptom of fatigue.
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.’
The only way forward, for the benefit of society and every patient group 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.
There is no such disease/s as ‘CFS’ – the name CFS and 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' and 'Myalgic Encephalopathy' and others), for the benefit of all the patient groups involved.
For more information on this topic, see the papers below:
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 don’t 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. Don’t 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? *new!*
Problems with the use of 'ME/CFS' by M.E. advocates *new!*
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.
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*:
(*Note that these three papers are designed specifically for members of the M.E. community, rather than the general public.)
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