Wednesday, February 11, 2015

What is in a Name?

Well the latest in the ME/CFS world is what to call it again?

But how important is a name?  My name is Jane, does that tell you what I am like, how I behave, what I look like?  My name means gracious, gift from god, I guess that would depend who you ask as to whether they think that is true.

Does the name of an illness have to describe what it is?  Cancer doesn't tell you what it is, or Diabetes.  Many illnesses are named after people Parkinson's or Huntington's.  Has anyone ever heard of Guillain Barre Syndrome or Diabetes Insipidus?  Not many, but they don't think less of it because they don't understand the name.

When people hear the word cancer their immediate reaction is that it is fatal, actually y not many people die from it these days, but I am sure that changing the name won't make any difference and the emphasis is on getting quick and effective treatments.

ME/CFS was first called Myalgic Encephalomyelitis, but got changed to Chronic Fatigue as no one knew what Myalgic Encephalomyelitis meant.  Some believe that ME and CFS are different illnesses as there is much more to ME that chronic fatigue.

Literally Myalgic Encephalomyelitis means

Myalgia - Muscle pain
Encephalomyelitis - Inflammation of the brain and or spinal cord.

But does that matter?  What is important is that it is a serious and debilitating condition that is not taken seriously.  The time that is wasted thinking of a suitable name takes away from developing diagnosis techniques and research into causes and treatments.  Whatever it is called it will never lose the stigma attached to being Chronic Fatigue or Yuppie Flu, it might get more respect if it was called We Don't Have A Clue Syndrome!

The proposed new name is SEID, Systemic Exertion Intolerance Disease, hmmmm what does that say, sounds like idleitis to me.  Someone did an internet search for SEID and the first thing that came up was 

Really helpful!  If he wants to come and do my chores though I will happily call it SEID!

Whatever the name is will never describe how the illness affects us and the symptoms we suffer.

How do you condense this into a name?
Poor co-ordination
Poor concentration
Unable to walk far
Unable to stand very long
Muscle pain
Joint pain
Stomach ache
Irritable bowel
Tender spots in back and shoulders
Weakness in arms and legs
Feeling cold
Irritable bladder
Tingling in hands, feet, head and face
Sleep disturbance, Insomnia
Bruise easily
Sore throat
Swollen lymph nodes
Food intolerances, gluten, fish, alcohol, sugar, dairy, yeast
Itchy skin
Itchy eyes
Mood swings
Nasal irritation
Intolerance to bright light
Intolerance to loud noise
Weight loss
Panic/ anxiety attacks
Visual disturbance
Painful tongue
Stiffness in arms and legs
Mouth Ulcers
Adrenaline issues.

They are my symptoms, they vary day to day and some are more of an issue than others.  Not everyone has the same symptoms or the same severity.  It is unlikely that everyone classed as having ME, CFS, SEID all have the same thing.  How can someone who can go to work, walk and run a home have the same as me or someone who is totally confined to bed and needs all care?  It's so confusing, but changing the name won't help.

What is in a name? ME, CFS, SEID? I don't really care what it is called, it already has a stigma and will never lose that, more needs to be put into proper diagnostics and treatment instead of what to call it, why does the name need to say what it is, other illnesses don't and they are taken seriously.


  1. Exactly! More gibberish & gobbledegook from the U.S. Importantly though is that this illness is M.E. It is not CFS or any other name. They had changed the name to CFS, focusing on one symptom. Now they've changed it from that to SEID, again focusing on one symptom, albeit an important one this time. Still nonsense!

    M.E. is a recognised illness. Since 1969 it has been included in the WHO classifications of illnesses, G93.3, neurological.
    Does the IOM intend to "persuade" the WHO to include this nonsense name, SEID, in their classifications and, if so, under which classification? Also, what does the WHO do with M.E.? Just remove it??

    It is all nonsense, a waste of time, energy and definitely a waste of money!! Money that could have been spent on research that could have helped treat people with M.E.
    50 M.E. experts had contacted the IOM stating that this was all unnecessary. They were experts, they know about M.E. There were criteria published already, we didn't need another one.

    How about we change the names of most other illnesses, e.g.:
    Emphysema - Chronic Coughing Syndrome
    Parkinson's - Systemic Shaking Disease
    Huntington's - Systemic Movement Intolerance Disease

    It's absolute nonsense! It's also disgraceful and hurting extremely ill patients.
    Thanks for your blog :)

  2. I would love to get rid of the crazy diagnosis criteria which they can dump anything into.
    For me it's about post exceptional malaise but not the i can do what i like today and pay for it tomorrow type. I function at 30-40% on a good day and go down to 20%. Not 90% down to 20%.
    Constant pain.
    Sensory probs
    Orthostatic intolerance
    Cognitive impairment although this is the least problem generally.
    And no preexisting other diagnosis. So may other diseases cause fatigue which leads to an M?E diagnosis!

    Not sure about the name hate it being all about exercise and no emphasis on immune dysfunction or pain, pain is not even in the diagnosis?
    I haven't had as much as a sniffel for 7 year.

    .SAID looks like he would be handiwork but if he can clean i,m up for a visit.:-)

  3. Thank you for your comments and support.