How to separate ME from CFS

The Hourglass Model
Greg Crowhurst 21st September 2012

You have to be feeling some kind of hope right now, what with that rocket blast, the Lipkin  Report, Mansel  Aylward on the doorstep  apologising, the other day ,  to a group of disability campaigners   - for the biopsychosocial model and now this from the 25% Group and The Young ME Sufferers Trust , in Scotland  :

Patient representatives at the Cross Party Group on ME today delivered an overwhelming vote that ME, as a discrete neurological disease, must be treated separately from other fatiguing conditions.

In the face of a massive diagnostic muddle (the label 'CFS' being a wide term with various different diagnostic criteria) any specialist clinics set up in
Scotland should identify and treat people with ME, and not a spectrum of fatigue states.

The votes cast were as follows:

For ME: 27 votes

For ME-CFS to encompass a range of fatiguing conditions: 5 votes. ( emphasis)

At last !

The question must  be asked though  - why was it not a 100% vote ? Who on earth with   ME  ,  would not want to make the separation between their neurological disease  and CFS ?

CFS, ("Complete Freaking Scandal") is  a hopeless botch-up ,    a foul muddy term that incorporates a commodious  range of illnesses and conditions right across the Chronic Fatigue/ Mental Health/Physical disease spectrum; it needs getting rid of.

CFS IS NOT  a disease category in its  own right.

The literature is sick  with references to  "Severe and Complex CFS" -but it is important to know  that these terms are used anecdotally ,that is all - possibly to describe Severe ME by some patients or doctors, but we will never know for sure until a proper diagnosis is performed, using the ICC Criteria - they could just as well be referring to a mental health need or some other as yet undiagnosed and untreated illness.

 CFS, that horrible malodorous label,  does everyone a disservice.

The sooner we are rid of its nasty  stink ,  the better . Hurrah for Scotland the brave !!

If only patients and clinicians  everywhere could  grasp this point, after correct diagnosis using the ICC Crietria : there is  no need whatsoever to use "CFS 

 To still carry on using the term "CFS" within an ME  Service, once you have diagnosed what is actually wrong with patients   makes a nonsense of using the ICC criteria !

Use of the term "CFS "or "Severe "or "Chronic " CFS by anyone simply indicates ignorant, poor diagnostic criteria .

That said,  the situation , as they say in Scotland is a "diagnostic muddle"  at the moment .

 To sort it you need someone who has the knowledge and the wherewithal to separate out who has Chronic Fatigue - a mental health condition, who has ME, a neurological disease and who has some other  undiagnosed illness or condition.

Out of  our local experience , fighting day and night for a medical ME Service , here's  a model for doing just that :

 The  "Hourglass Model" :

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