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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 stop there...

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 Flu . 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 ), Hypothalamitis

So many names! 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 ), Hypothalamitis

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.

But why?

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 satisfied with.

"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 read...

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 sufferers.

Oh - and maybe then, we can all decide on a more suitable name too? 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 ), Hypothalamitis

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! 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 ), Hypothalamitis

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 17] --

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.

Bottom line?

It's all down to interpretation:

"[In 1988] in the UK, psychiatrist Simon Wessely rose to prominence.

Wessely leads a group of UK doctors, mostly but not exclusively psychiatrists, who have colloquially become known as the “Wessely School”. [ref 18]

(...) 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 become known.

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 of patients.

(...) It is important to be familiar with the fact that “chronic 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 ), Hypothalamitis

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