1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

Discussion of the NEW International Consensus Criteria

Discussion in 'General ME/CFS News' started by Nielk, Jul 21, 2011.

  1. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    103
    England
    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?
  2. Sasha

    Sasha Fine, thank you

    Messages:
    6,998
    Likes:
    4,557
    UK
    Oops, sorry! Thanks, Tulip!
  3. Bob

    Bob

    Messages:
    6,301
    Likes:
    6,587
    England, UK
  4. LaurieM

    LaurieM

    Messages:
    72
    Likes:
    5
    UK
    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
  5. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    agreed
    ------------
  6. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    873
    Likes:
    267
    Brisbane, 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.
  7. Nielk

    Nielk

    Messages:
    4,826
    Likes:
    3,752
    Queens, NY
    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.
  8. alex3619

    alex3619 Senior Member

    Messages:
    5,969
    Likes:
    7,835
    Logan, Queensland, Australia
    Hi, here is another important point:

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

    Bye, Alex
  9. biophile

    biophile Places I'd rather be.

    Messages:
    1,247
    Likes:
    3,293
    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".

    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?

    ;)
  10. slayadragon

    slayadragon Senior Member

    Messages:
    1,062
    Likes:
    283
    twitpic.com/photos/SlayaDragon
  11. wdb

    wdb Admin

    Messages:
    753
    Likes:
    436
    London
    What thread, can we have a link ?
  12. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    103
    England
  13. Chris

    Chris Senior Member

    Messages:
    577
    Likes:
    173
    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
  14. wdb

    wdb Admin

    Messages:
    753
    Likes:
    436
    London
    thanks :thumbsup:
  15. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    503
    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?)
  16. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    503
    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?
  17. shannah

    shannah Senior Member

    Messages:
    810
    Likes:
    131
    I agree Chris. I found the omission of Lenny's name odd and rather glaring. Curious to hear his thoughts on it now.
  18. its ME Jeff

    its ME Jeff

    Messages:
    13
    Likes:
    0
    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.
  19. kaffiend

    kaffiend Senior Member

    Messages:
    166
    Likes:
    122
    California
  20. Nielk

    Nielk

    Messages:
    4,826
    Likes:
    3,752
    Queens, NY
    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.

See more popular forum discussions.

Share This Page