ME / CFS :: An Illness Of Many Names ...
You may have noticed that this illness is referred to differently
depending on who you talk to.
Some people call it an 'illness', others call it a 'condition',
and others call it a 'disease'. Even its name has yet to be universally
agreed upon. In fact, this condition has had, and still has many
names. And what you call it largely depends on whereabouts you are
in the world.
Today, Post Viral Fatigue Syndrome , Myalgic Encephalomyelitis
, and Chronic Fatigue Syndrome are the most commonly
used names for this illness. But those are just the names
that are formally recognised by the World Health
Organisation (WHO)! The list of names for this illness doesn't
Most of the older names for this illness relate to the place from
which an 'outbreak' of the illness occurred at the time.
For example, in New Zealand they called it Tapanui flu
; and in Iceland they called it Icelandic disease
. And when an outbreak of the illness happened at
the Royal Free Hospital in Britain in 1955, it became known
in the UK as Royal Free Disease .
Those older names aren't really used anymore. But still,
new names for this illness keep on coming...
More recently, Dr Speight named it Myalgic Encephalopathy
(a controversial move to replace the term Myalgic Encephalomyelitis
If you're in America, you're more likely to call it,
Chronic Fatigue And Immune Dysfunction Syndrome
(or CFIDS ).
Reverse therapists call it Hypothalamitis
And in the eighties, it was dismissively labelled Yuppie
So many names!
Still, many sufferers believe that even the existing names
for this condition are inadequate and that a more suitable
name for this condition should be found. Even now, a single name
for this mysterious and complex illness cannot be agreed upon.
Why Can't Anyone Agree On A Single Name?
Why? Because we still don't know enough about this illness.
In fact, there are different opinions on just about every aspect
of this illness.
The lack of understanding of this highly complex illness, coupled
with the distinct differences of opinion (including whether it is
physical or psychological), have led to a collection of labels and
definitions - none of which the ME / CFS patient population is yet
"The more I learned about the different names for ME /
CFS, and how they all came about, the more I realised how much
this area is riddled with
politics. As you'll see when you read more about
these names (and although I've tried to summarise it as
much as I can), it doesn't exactly make for a relaxing
Unfortunately, when it comes to ME / CFS, politics are widespread
because we just don't know enough about this illness.
While there are 'grey areas', there will always
be room for speculation - both the helpful and detrimental kind."
-- Claire, Post Viral Fatigue Syndrome Sufferer
& Editor of Sleepydust --
Research funding is sparse, and although there
have been lots of important
breakthroughs in ME / Chronic Fatigue Syndrome research, there
is still much to understand. Yet research will be the only
way we can put to rest the incorrect theories that are being insisted
upon by some medical professionals in the ME/CFS arena, and the
often hurtful treatments that are being pushed onto many unfortunate
Oh - and maybe then, we can all decide on a more suitable name
To learn more about the lack of research on ME/CFS, and what YOU
can do to help, click here!
Do All These Names Describe The Same Condition?
If you're anything like me, you're probably confused
by all these names! Some people say they all describe the same condition...
some people disagree. What a headache!
So do these names all describe the same illness?
Well, each of the names for this illness (ME, CFIDS, PVFS etc.)
come with a slightly different definition.
But because these names all seem to vaguely describe the same illness
(or very similar illnesses at the very least), many people
use the terms ME , Chronic Fatigue Syndrome ,
Chronic Fatigue Immune Dysfunction Syndrome and Post
Viral Fatigue Syndrome interchangeably.
"A number of different names have been given to what would
appear to be essentially the same cluster of symptoms and signs,
or at least highly overlapping clusters."
-- Prof. Basant K. Puri, Chronic
Fatigue Syndrome; A Natural Way To Treat M.E., [ref
But it's important to realise that there are
variations in each of the definitions for these names
- a 'variation upon a theme', so to speak.
They are not all the same.
For example, many believe that the Chronic Fatigue Syndrome
label describes an 'umbrella illness' which includes a number of
conditions (many of which are thought to be yet unnamed). In comparison,
other names such as Myalgic Encephalomyelitis are more
specific. Some people believe that Chronic Fatigue Syndrome
is totally different to ME and others believe ME
is a subgroup of CFS.
It's all down to interpretation:
"[In 1988] in the UK, psychiatrist Simon Wessely rose
Wessely leads a group of UK doctors, mostly but not exclusively
psychiatrists, who have colloquially become known as the “Wessely
(...) He is well-known
for his strongly-held beliefs that neither ME nor Gulf War Syndrome
exists, [ref 19]
and that such patients are mentally, not physically, ill.
(...) The present confusion has been compounded by the
fact that the term “CFS”
has been included by the WHO in the latest revision of the International
Classification of Diseases as one of the terms by which ME has
In practice, this has come to mean that when referring to “CFS”,
some doctors (mostly some UK psychiatrists led by Simon Wessely)
are talking about psychiatric
illness involving “chronic
fatigue”, whilst international experts are talking
about ICD-CFS, which is synonymous with ME.
It is important to be aware that published
international research on CFS (as distinct from UK psychiatric
research on CFS) reflects patients who are likely to have ME
rather than psychiatric disorder.
The essence of the confusion concerns the use in the UK of
the combined term “CFS/ME”, given that “CFS”
means different things to different people.
(...) ME/ ICD-CFS is formally
classified as a neurological disorder in the WHO International
Classification of Diseases. The whole area of terminology has
become a minefield for the unwary, to the serious detriment
(...) It is important to be familiar with the fact that
fatigue” and chronic “fatigue
syndromes” do not equate with chronic fatigue syndrome
(CFS) or with ME."
-- E.P. Marshall, M. Williams, M. Hooper, What
Is ME? What Is CFS?, December 2001, p20 --
Despite the differences, it seems that the 'name'
that your illness is given, very much depends on who is diagnosing
you, and whereabouts in the world you are.
Category: Myalgic Encephalomyelitis (ME ), Myalgic Encephalopathy
(ME ), Chronic Fatigue Syndrome (CFS ), Post Viral Fatigue Syndrome
, Tapanui Flu , Icelandic Disease , Royal Free Disease , Yuppie
Flu , Chronic Fatigue And Immune Dysfunction Syndrome (CFIDS ),
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