Hi Nielk, the statement where the ICC says that the name CFS is to remain for people who don't fit the ICC diagnostic definition.
Is in the Conclusions section of the ICC it says
Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.
So only those who fit the ICC have ME.
Everybody else who doesnt have ME will not be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.
They will continue to have a CFS diagnosis.
This is backed up by Marj van de Sandes, (one of the principal writers of the ICC) recent statement.
Patients who have myalgic encephalomyelitis (ME) are only one of many groups placed under the CFS umbrella.
As Bob has pointed out they are not saying anything about the people in the CFS group. The ICC makes it very clear that they are solely focusing on ME and not tackling CFS in this Criteria with this statement
The scope of this paper is limited to criteria of ME and their application.
RE From what I understand is that those people who don't fir ALL the criteria, should be called IME - Idiopathic ME
I think that they make it pretty clear that they want to drop the name CFS completely.
This is not the case they have included Atypical ME which is nothing like CFS, its is ME with a few less symptoms as described here
Atypical Myalgic Encephalomyelitis: meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.
The disease that they are describing is very different to CFS and the CCC ME/CFS, and the numbers that they expect to qualify for it out of those diagnosed with CFS is not high, as they make clear by including this statement from Jason et al
Only ten percent (10%) of patients identified as having CFS actually had ME
Which is why it is really important that the Coalition 4 ME/CFS proposal is stopped, it will mean that all the people with fatigue conditions will wrongly be labeled as having a Neurological disease, and will put CFS on the same footing as ME, undoing all that the ICC is trying to achieve.
Hope this helps, unfortunately the ICC is a Criteria written by doctors, for doctors, and is full of medical jargon and not an easy and clear read for the lay person especially when people are very sick and find it hard to concentrate. It would be nice if they would produce a simplified version for the patients, after all reading the ICC is exactly the kind of thing that gives ME patients relapses.
All the best