caledonia
Senior Member
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PEM is now PENE (post exertional neuroimmune exhaustion). Pronounced pen'-e. Rhymes with "henna"?
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Even without reading it, I can't imagine that the criteria will be very much at odds with the Canadian Consensus Criteria. Five of the members of the Canadian Expert Consensus Panel were also on this panel; the lead author and consensus coordinator for the earlier document are listed as the coeditors for this article; 100% consensus was achieved.
Has very much changed in terms of diagnostic criteria since 2003?
Ember do you know if Dr.Bested from Toronto is on this as well?
thanks
GaryK
Here is the criteria table from the paper.View attachment 6147
Whilst a definate step in the right direction I'm confused as to why people think organisations and governments that refused to acknowledge the CCC would accept this new ICC. And if they dont how does this help us?
The CDC have at times acknowledged that ME and CFS are different I think. Since CFS is an exclusionary diagnosis, anyone diagnosed with ME will be excluded for a diagnosis of CFS I think, since ME explains it all.
Bye
Alex
Has anyone got a full-text copy of this yet? Please post a link if/when you do.
This is truely an international panel which I think arose from late last year's Australian (Bond University ??) conference. Glad they were as good as their word at following through on this.
One step at a time. What this does is unify researchers and patients under a single banner of ME. Now we can begin to pull in the same direction. I have never seen such cooperation before in this field. A momentous achievement.
The arguments of whether it was cfs/me, me/cfs, cfs, etc were dividing patients. If we can present a more united front, then we will get a modicum more of respect. Now everyone can demand the use of ME as a label. The clarification of criteria will also significantly help assessing results of research. We will see positive results from this move within 12 months.
Eg If the Lipkin study comes up negative, this criteria can be used as a lever to devalue his results.
In my humble opinion, this is the BIGGEST development that I have seen in my 9 year journey.
How could the CDC or NIH or any governmental agencies in other countries dismiss this?
With all these greatest ME minds from all over the world and 100% agreement - what can they say?
Did you see how many studies and articles this is based on?
It's not like three doctors sitting around a table and just deciding - oh let's just change the name to ME because we like this name better.
The reason I think this is so big for us is that by reading it I get that they are reaching out to all doctors and telling them how to diagnose this illness. It will also help with further studies on ME because it will be a more homo-genus group . Lastly we might start to get some recognition that this is a real disease and not a nonsensical syndrome.
Why not be optimistic about this? All these Doctors from all over the world got together to ink this on their own time. I think they deserve a tremendous reaction of gratitude from the patients they represent.
There is many patients who have CFS who dont fit that criteria hence there will still be division. What happens to those patients?
There needs to be division as not everyone has got the same or even similar things going on.
The criteria I guess may be much like the canadian consensus one. There is many patients who have CFS who dont fit that criteria hence there will still be division. What happens to those patients? There needs to be division as not everyone has got the same or even similar things going on.