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About ME

ME or CFS? On the name

The first words of the 2011 ICC (see ICC post) are spent on the name ME, that substitutes the previous name Chronic Fatigue Syndrome (CFS) used in the 2002 Canadian Consensus.
It may sound pointless to many people talking about the name of a illness, but this question has been and still is of enormous importance, not only because ‘fatigue’ isn’t the main ME symptom, but above all because many sufferers haven’t yet received a written diagnosis and a consequent therapy, even if in very severe conditions sometimes.

Actually, the confusion still persists.
Because ME is known from 1934 and it was formally given a name to this disease in 1956, while CFS first appeared  in the late 1980s, and they are two different things: Chronic Fatigue Syndrome, is a physical syndrome, like the word says, and I will dedicate a post to it.
And also it really exists a “Chronic Fatigue”, as condition that may accompany many mortal illnesses, such as cancer, leukemia, etc..or chronic illnesses as diabetes, Crohn’s disease, etc.. or  psychiatric illnesses .
I will definitely leave aside CF in this blog.
CF, CFS and ME, are three different things..

At any case, in the 2011 ICC they explicitly refer to the ME code G93.3 and they stress the main features that distinguish CFS from ME, eventually approaching this comparison chart:
http://www.hfme.org/comparisonchart.htm

We can’t ignore the 2011 ICC, because International Consensus documents are what that most influences the Institutions and, finally, the Governments decisions on Public Health.
So I don’t want follow the polemic current here and accept that this group of scientists evolved from a concept to another one and are trying to help population to get better and receive medical assistance.

As we will see in the diagnosis post, the diagnostic criteria for ME is narrow, can distinguish ME patients from CF and CFS patients and these differences have been further clarified in recent studies (in ICC, page 2):
“Accordingly, the primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low threshold of fatigability and symptom flare in response to exertion.”

When somebody tells you have CFS it sounds like you ‘feel tired’, someone said that it’s like calling Alzheimer ‘chronic loss of memory syndrome’ or like calling tuberculosis ‘chronic cough syndrome’. Actually in the same ICC, page 2, we find:
“Using ‘fatigue’ as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has ‘chronic fatigue’ attached to its name – e.g. cancer⁄ chronic fatigue, multiple sclerosis ⁄ chronic fatigue– except ME⁄CFS. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day.”

In medicine is not rare calling ‘syndrome’ a multisystemic disease when they still know few about it. But, respect to ME, the label CFS has had very dramatic consequences.
For the same reason, it is natural that, as investigations goes on, the name changes. We can read, in ICC, page 1:
“The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).”

Nowadays ME is many times called ME/CFS, for continuity with the old most common approach and with the diagnoses prior to the last ICC, but I will call it ME, always and definitively.

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Discussion

2 thoughts on “ME or CFS? On the name

  1. Does this new ICC criteria describe Prof Ramsey’s ME?
    If he looked at someone with ICC ME would he recognise it as the same illness as he diagnosed in me?
    or should I continue to define what I have as Ramsey’s ME, rather than just ME?

    Posted by M.E. In The 21st Century | April 18, 2012, 2:27 pm
  2. Hi!
    Thank you for your comment and sorry for the late.
    The ICC criteria and prof Ramesy’s ME criteria don’t exactly coincide, but they refer to the same illness.
    There are various criteria for ME:
    1. Ramsay, 2. Nightingale, 3. ‘London’, 4. Goudsmit, 5. ICC,
    I hope that one day there will be only one!
    Prof Ramesy first formally coined the name Myalgic Encephalomyelitis and he had been studying ME for 30 years.
    He is one of the great doctors we own much gratitude.
    You don’t have to worry, if your doctor is of Dr. Ramsey’s school you got a good diagnosis. 😉

    Source:
    http://www.name-us.org/DefintionsPages/DefRamsay.htm

    Posted by kinusan | May 12, 2012, 4:31 pm

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