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Discussion of the NEW International Consensus Criteria

Wonko

Senior Member
Messages
1,467
Location
The other side.
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?
 
Messages
72
Location
UK
Am I wrong but can't see any British names there? Can see 3 Australians, 1 New Zealander, 1 Belgian, at least 1 Canadian, 1 Latvian, 1 Japanese etc etc.

Terry Mitchell, MA, MD, FRCPath; Honorary Consultant for NHS at Peterborough/Cambridge, Lowestoft, Suffolk, United Kingdom.

Nigel Speight, MA, MB, BChir, FRCP, FRCPCH, DCH; Independent, Durham, United Kingdom
 

leaves

Senior Member
Messages
1,193
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?

agreed
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RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
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.
 

Nielk

Senior Member
Messages
6,970
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.
 

biophile

Places I'd rather be.
Messages
8,977
extract from the international ME definition:

The label chronic fatigue syndrome (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term myalgic encephalomyelitis (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organizations International Classification of Diseases (ICD G93.3).

Took a while to plow through but I had a look at the full text (http://www.meassociation.org.uk/?p=7173).

This consensus document by 25 international authors is impressive. It criticizes and eliminates the term "CFS", cites a lot of important research on pathophysiology, makes many excellent points along the way, gives the correct impression that ME is "an acquired neurological disease with complex global dysfunctions", and is a major slap in the face to how the biopsychosocialists approach "CFS/ME".

Although this ME criteria seems more complicated than the Canadian criteria, I apparently also meet the stricter research definition of ME. Now I feel more familiar and associated with the term ME without saying "CFS" or "ME/CFS".

biophile wrote on another thread:

Then of course is the dreaded response. If someone is actively skeptical about ME/CFS, you aren't going to convince them otherwise in a single sentence. Saying "I have CFS" in the current climate, part of me feels like that is almost as cringeworthy as saying something like "I'm a pathetic loser so please make fun of me and denigrate the worth of my existence as a human being".

Some people instead say "I have ME". I've never been to the UK but I have the impression that over there, in the public eye "ME" has erroneously become synonymous with "chronic fatigue" just like CFS, except possibly worse in the eyes of those who think ME doesn't exist, so if I said "I have ME" in the UK I'd feel like I was at serious risk of being misinterpreted as saying something like "I have psychosomatic chronic fatigue that can be cured with psychotherapy but I'm one of those stubborn somatisers who lacks insight and refuses to call it CFS, I've convinced myself I have an organic disease called ME in order to escape the stigma of admitting to my mental problems and weak character, oh and I hate psychiatrists because they know the truth and threaten my lifestyle".

This climate still exists, and medical authorities may still largely ignore this definition of ME as they did the Canadian definition of ME/CFS, but in recent years the problems with the flawed Oxford/CDC definitions have become more and more prominent in the spotlight, we can now be encouraged by this sign of the reappearance of ME in the recent published literature.

If Peter White thought the Canadian criteria was "impossible" to use in the PACE trial because is somewhat more complex than Oxford/CDC and "burdens" him, this new ME criteria would be a stressful nightmare for him and his colleagues if they had to use it. They may need some therapy after all this: CBT to correct their "abnormal illness beliefs" regarding ME and to overcome the "fear avoidance" and "psychosocial barriers" that prevent them from accepting biomedical research, and GET to increase their activity levels so they are fit enough to apply "impossible" Canadian and/or international ME criteria to research without complaining about "burden" and enable them to perform "unethical" tilt-table tests etc on patients who will show abnormalities when these tests are actually done.

Compare this international ME definition (and the Canadian definitions) versus the simpleton Oxford/NICE/CDC definitions, guess who seems to know better what they are talking about when it comes to our symptoms and pathology?

;)
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
Hi, just a word from a Canuck: there are at least 3 Canadians involved: Bruce Carruthers and M. van de Sande, the two most involved in writing the Physicians version of the CC definition, and Gordon Broderick from the U of Alberta, now working with Nancy Klimas on cytokine patterns inter alia. Good for us! However, it would have been nice to see Leonard Jason's name on this, since he has been doing such good work on the whole issue of definitions--hope that is not a bad sign. Best, Chris
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
Leonard Jason's research is multiply cited in this paper, so I'm not worried that his point of view is under-represented - it seems that his work has guided a lot of this.

People seem unclear about what this is - it IS the "updated Canadian Consensus Criteria" that we've been waiting for. It is no longer called the Canadian Consensus, but the International Consensus. It's not an official name change that is binding on any national health agency or other official body - unless and until they adopt this set of criteria as the disease definition. We can hope that the US catches up to the 21st century and does so - better yet, we can ADVOCATE that it does so.

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?)
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
The other thread is called "Name Change to ME," which is misleading - that's not what the paper is really about. This thread has a much better and more accurate title. Can I suggest that the two threads be merged?
 

shannah

Senior Member
Messages
1,429
However, it would have been nice to see Leonard Jason's name on this, since he has been doing such good work on the whole issue of definitions--hope that is not a bad sign. Best, Chris

I agree Chris. I found the omission of Lenny's name odd and rather glaring. Curious to hear his thoughts on it now.
 
Messages
13
I was surprised not to see A. Martin Lerner's name on there as well. How absolutely sad and appalling it has taken nearly 30 years to reach this point. Millions of people left to suffer alone.
 

Nielk

Senior Member
Messages
6,970
I was surprised not to see A. Martin Lerner's name on there as well. How absolutely sad and appalling it has taken nearly 30 years to reach this point. Millions of people left to suffer alone.

It's all true, but we are where we are. (my husband's favorite saying) We can't go back in time. We should rejoice though for the possibilities that this will hopefully achieve for us.