What the Bleep is "ME/CFS"

As part of our ongoing campaign to get rid of the shameful label that is "CFS" I have posted a short "tooltips" essay on the front of Stonebird :


I will carry on campaigning , in my own way, to get rid of CFS, no matter the practical issues.

I was part of the Learning Difficulty/Mental Health , People First/Survivors Speak out movement back in the 80's; this coincided with the closure of the large  mental hospitals and asylums;  I witnessed , at first hand, how very meaningful and extraordinarily powerful  it is  for people to take their power back  - and how much names and labels mean.

When I trained as Nurse, my qualification was "Registered Nurse for People who have a Mental Handicap." Today, not that many years later, "mental handicap" us  just so inappropriate, the correct term to use is " Learning Difficulties".

 A while ago, those  same human beings were being classed as "Idiots", "Imbeciles" , "Morons" or "Cretin"( from the French for Christian : Christ-like),  terms that were  slowly replaced by the much more "enlightened  "Retarded" in the 1960s.

"Spastic" is no longer  an appropriate label for someone who has Cerebal Palsy. Still the Spastic Society was going strong until recently and who calls someone with Down Syndrome a "Mongol" anymore ?

 "CFS",  like so many labels before it, has now become the most  derogatory term; it is high time people with ME take  their power back and get rid of it.

The medical profession have lrealy let people down by their  use of the term CFS , by  not speaking up loudly enough - by caling it a "Syndrome" rather than a disease.

Much better if everyone called it Myalgic Encephalomyelitis - its proper, true name.

I am spurred on   through my  involvement  locally, with the NHS.  I have been  profoundly shocked  at the  across the board disdain  of people  labelled as having "CFS" :  rarely is the term "ME" used  and the talk, at the highest levels here is  about Wessely and  the "gold standard" that are the Oxford Criteria  

What about all those CFS papers that have been published ?? Those authors  frankly have let us down, using the wrong name.

What about all those papers on Mental Handicap ? What about my own qualification ? What about all that published research on the "feeble minded" ?

You move on; that's all. In the history of human services, that is the way progress happens.  You make a stand for the truth and  move on from a clearer place.


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