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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Celebrating the ICC!!!

Enid

Senior Member
Messages
3,309
Location
UK
Hooooray ! Thanks Sasha.

Just read and it's stunning news - going to publication - no excuse for the UK establishment now. Might attach to myself if unlucky enough to find myself in A & E again and ward off the "all in your mind" school deep within medicine here.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Hi, here is another important point:

"The six-month waiting period before diagnosis is no longer required."

Bye, Alex

Yup and as we know, for many, not resting/getting support/help during htose curical initial months is what seems ot make things worse, ie, pushing yourself, not realizing hwo serious it is etc.


Also this is more HARD ammunition to charge the psychs (and others) with quackery, for failing to adhere to facts of the disease, and the best interests of the patients.
Taste the finger of justice, Weasels!
:p
 

leela

Senior Member
Messages
3,290
This is fantastic!
Now I can hand something to peripheral docs (like eye doctor, dentist, chiro, what have you) that
dismisses what that person might *think* they know about "chronic fatigue" and clearly
spells out what the illness is. I have shown docs the relevant portion of the CCC but the whole
ME/CFS doublespeak thing I think causes some to think I am "dramatizing" when I call it ME. Not any more!
 

Nielk

Senior Member
Messages
6,970
This is fantastic!
Now I can hand something to peripheral docs (like eye doctor, dentist, chiro, what have you) that
dismisses what that person might *think* they know about "chronic fatigue" and clearly
spells out what the illness is. I have shown docs the relevant portion of the CCC but the whole
ME/CFS doublespeak thing I think causes some to think I am "dramatizing" when I call it ME. Not any more!

I'm with you Leela. I can't wait to show it to my non believing internist and a whole line of people.
 

mellster

Marco
Messages
805
Location
San Francisco
Great! Finally criteria that make sense, was surprised to see the wideness of included symptoms such as twitching, IBS, chest wall pain, neuro-sensitivity to stimulants and defining PEM as the hallmark symptom. Those criteria make it sound much more like a neurological disorder caused by viral agents now.
 

maddietod

Senior Member
Messages
2,859
Thanks to all who posted the new criteria. I can finally hand people a checklist and say "I've got ME, and this is what mine looks like." The personal rammifications are huge, and politically we've finally got a club, instead of a wet noodle.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
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.

I agree completely. This is huge! We should be sending up balloons.:balloons::balloons::balloons::balloons:

Getting this accepted internationally would improve the quality of research tremendously. No more garbage in, garbage out. I think we should start mobilizing to support this.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
As far as I can tell, this new document really clarifies ME from CFS. :D

I'm glad thet will no longer require 6 months of fatigue before diagnosing ME also. So much damage can occur while we push ourselves and while whatever it is behind ME is allowed to go unchecked.

And IMHO, the change from PEM to a more accurate description of what is actually happening may help us uncover the root cause of this symptom. I hope they do the same with orthostatic intolerance.

It's funny, all these years I thought most doctors knew all of this about CFS/ME but after spending time on the web, I see that they didn't. Hopefully, this will clarify ME from CFS ... tc ... x
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
I'm glad thet will no longer require 6 months of fatigue before diagnosing ME also. So much damage can occur while we push ourselves and while whatever it is behind ME is allowed to go unchecked.

And IMHO, the change from PEM to a more accurate description of what is actually happening may help us uncover the root cause of this symptom. I hope they do the same with orthostatic intolerance.

agreed........
 

shannah

Senior Member
Messages
1,429
Sounds like there's more yet to come:

Page 14
"It is important to note that the current emphasis must primarily remain a clinical assessment,
with selection of research subjects coming later. For this reason the panel is developing
Physicians Guidelines, which will include diagnostic protocol based on the International
Consensus Criteria and treatment guidelines that reflect current knowledge."



Note the comment on the same page:

"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."
 

waiting

Senior Member
Messages
463
The proposed new name for PEM also seems significant - Post Exertional Neuroimmune Exhaustion - PENE. (They have a pronunciation guide in there but I'm bad at reading that dictionary notation. What does it rhyme with?)

And to caledonia; "PEM is now PENE (post exertional neuroimmune exhaustion). Pronounced pen'-e. Rhymes with "henna"?

urbantravels and caledonia, I think PENE (pen'-e) would be pronounced "penn-ee" (so, sounds like "penny" but with emphasis on both syllables).
 

Ember

Senior Member
Messages
2,115
I for one think that we should all e-mail to each and all the members of this comity to thank them for all their hard work they have done FOR OUR BENEFIT.

Nice sentiment, Neilk. I was thinking of roses!