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Discussion of the NEW International Consensus Criteria

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

  1. Bob

    Bob

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    Yes, the timing does seem like rather a coincidence doesn't it!

    Here's a link to the other thread that Ember mentions (Wessely's Words Revisited):
    http://phoenixrising.me/forums/showthread.php?13032-Wesselys-Words-Revisited
     
  2. Ember

    Ember Senior Member

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    I like your thoughtful post, but...

    This publication had no sponsorship, no money, no questionable motives. That is at least part of its significance.

    Those who don't like it may not need to wait for more evidence before taking a stand.
     
  3. shannah

    shannah Senior Member

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    National ME/FM Action Network's Response Regarding New M.E. Definition.


    by XMRV Global Action on Monday, August 1, 2011 at 12:21pm

    http://www.facebook.com/notes/xmrv-...regarding-new-me-definition/10150273554551797




    The following is a message from Lydia E. Neilson as posted to co-cure:

    Dear Friends:




    There has been much discussion about how the new international definition by Dr. Bruce Carruthers et al fits with the 2003 Canadian ME/CFS definition and that everyone is asking for a response by the National ME/FM Action Network..



    Please understand that it is not up to the National ME/FM Action Network to either accept or reject the definition nor how it fits with the 2003 definition. This is a matter that only the scientific community can discuss and decide upon.

    Our Network's responsibility would be to follow their lead.



    The International Association for CFS/ME (IACFS/ME) www.iacfsme.org who has over 500 scientists, researchers and medical members will shortly be issuing an announcement on this matter. It will also be discussed at the IACFS/ME

    research and clinical conference our organization is hosting in September.



    The definitions will be discussed in September. However, before an official response is


    possible, we need to know what the response is to the new definition and are

    closely monitoring the doctors and scientific communities response. Presently it is being discussed by those in

    authority as you have to realize that it is not our Network who can make that
    decision nor any other group.


    The responsibility of the National ME/FM Action Network is and will always be to do what is best


    for our ME/CFS and FM population by keeping up to date on research and
    treatment and give support to those in need of same.


    Lydia




    Lydia E. Neilson,
    M.S.M. , Founder


    Chief Executive Officer



    NATIONAL ME/FM ACTION NETWORK



    512 - 33 Banner Road



    Nepean, ON K2H 8V7 Canada



    Tel. 613.829.6667



    Fax 613.829.8518



    Email: mefmaction@ncf.ca



    www.mefmaction.com



    NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME

    INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA



    SEPTEMBER 22 - 25, 2011



    For details on agendas and registration, please

    visit:



    Member of www.iacfsme.org
     
  4. Ember

    Ember Senior Member

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    Thanks, shannah. This response is an improvement over the earlier one. It's an interesting take on the role of advocacy groups too. (I notice that the Coalition for ME/CFS states as part of its vision that it will advocate for the adoption of the Canadian Consensus Document.)
     
  5. ixchelkali

    ixchelkali Senior Member

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    That would be nice, but doesn't it have to wait until the study is actually published? Usually the authors of scientific papers don't comment on them before publication.
     
  6. Bob

    Bob

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  7. Nielk

    Nielk

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    Jamie writes:

    "For the first ten years of my illness, I had no PEM. I could bench press over a hundred pounds, rode on the back of a tandem for an hour or more a couple of times a week, played tennis, could scuba dive and ski. But if I worked a full, normally intense day, I'd get a headache and a hypertensive crisis (up to 220/140)."

    I don't get it. Is Jamie implying that PEM should be dropped from the diagnostic criteria?
    From what she is describing - by which criteria is this considered CFS?

    I thought that patients were complaining that the criteria need to be more defined as opposed to be more inclusive.
    If the above description would result in a CFS diagnosis, then probably half of the human population would be included.

    She also writes that the criteria does not include the gradual onset patient, yet the paper clearly states that most cases start with an acute virus/flu and some have gradual onset.

    she writes

    " for some peculiar reason, I'm still sharp, never "foggy", and my memory is pretty good, as good as it ever was anyway. I wonder why I'm different in that respect, when otherwise I'm classic, and the only thing I can come up with is lots and lots of exposure to high dose oxygen."

    At first she says that she doesn't have the brainfog or memory problem. Does she want us to take that out of the criteria too?
    She does attribute it though to high dose exposure to oxygen.

    So, if we take out PEM and brain fog and memory problems, what should we leave in?
     
  8. Nielk

    Nielk

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  9. Tulip

    Tulip Guest

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    Her response is annoying!. I trust the experts, if you don't have PENE you don't have ME, that's not rocket science is it?. We will never get anywhere unless true ME is clearly defined and the people that don't have it are cut out, as painful as that may be for some, it clearly shows they were misdiagnosed. It's simply not fair to expect the criteria to be expanded to fit people that don't have ME into it...
     
  10. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I think we still have yet to adequately define onset. As Jamie says even people with sudden onset appear to have some gradual onset signs that were not obvious. I think this may also explain Jamie's onset. It may be that PEM only appears when a stage of ME is reached. She began taking ARVs before that stage was reached. So according to her PEM should be used as an inclusionary criteria, but not an exclusionary one. I know there is a dearth of evidence on ME, and that also extends to whether nor not sudden onset is more indicative than gradual onset. I think sudden onset makes it easier to define which is why it is focussed on more. Also it is perhaps more easily perceived as a biological mechanism.

    I think Jamie's questions need to be asked, I just don't think she should be the one asking them, as she is now in a delicate position as a standard bearer/clinician and someone we are looking to for stability and direction.
     
  11. mellster

    mellster Marco

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    I agree with Rusty. My first PEM was sudden, but there was gradual onset of signs for what could come, e.g. IBS and fibro pain. I do think there are many subsets, people without brainfog or cognitive issues for sure and even people without PEM, although it is hard to say whether you have PEM if you are fairly functional but don't push yourself to the limit several times to hit the threshold. I do think of PEM though as one of the major hallmark sign that probably most patients have, so it should have strong weight as an inclusionary symptoms, and a little bit of weight as an exclusionary symptom (but not make it or break it). I also think that people can have different areas of malfunctioning (mal-oxygenation etc.) which might explain the wide variety of symptoms and areas of pain.
     
  12. floydguy

    floydguy Senior Member

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    The hallmark issue should be ANS dysfunction in my opinion. PEM is problematic because it is hard to measure and as Jamie notes many people go periods of time without it being an issue - very troublesome for anything presented as defining a disease....
     
  13. Nielk

    Nielk

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    This thread has confused me more than any other.
    will the real ME/CFS please stand up?
    It seems to be different to each person.
    Illnesses are not defined that way. Maybe this illness does not exist at all.
    Maybe it's just whatever any personal experience dictates?
    It seems like everyone is describing a different illness.
    So, what is the commonality here?
     
  14. Tulip

    Tulip Guest

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    The thing is there are bucket loads of historical info on ME - real ME and that along with the ICC is what we need to go by. For my illness, even when I went into remission, I still had PENE, just on a far lighter level.

    The other thing is that I truely believe XMRV is not ME and is another group altogether, which would explain the different symptoms..
     
  15. SOC

    SOC Moderator and Senior Member

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    My guess is that the commonality is immune dysfunction. That leaves us open to all kinds of different secondary infections which may be hard to detect if our immune systems are not producing antibodies well, for example. The variety in types of infection, location of infection, and degree of infection could explain the range/difference of symptoms.

    HIV/AIDS patients had the same questions in the early days -- how can one illness cause so many different symptoms? The answer -- immune dysfunction.
     
  16. Bob

    Bob

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    Well, ME is a multi-symptom illness, and different symptoms can be predominant at different times, either in an individual, or in different individuals.
    I think that was Jamie Deckoff-Jones' main point.
    I think she was saying that it's a shame that the new criteria don't put more of an emphasis on fluctuating symptoms over time.
    That was how I read it anyway.
    In which case, she isn't suggesting that any of the criteria be removed, but that she would prefer that the ICC states that a physician should take into account a patient's present symptoms and the symptoms at the beginning of the illness, and everywhere in between.

    Having said all that, I don't particularly recognise Jamie's description of ME either, and I agree with you Nielk, I think that PEM/PENE should be a prerequisite for ME, whatever stage of the disease we are at. Also, I'm not sure how it is possible to have flu-like malaise, and not be foggy headed? But maybe it's just not helpful to pick apart and analyse Jamie's symptoms. She is just one individual, with a range of complex symptoms, and if she doesn't fit into the ICC's criteria, then she doesn't.

    Maybe this demonstrates how heterogeneous the CFS/ME diagnostic criteria are?


    With regards to sudden onset and gradual onset, Byron Hyde's has discussed this in detail, and he says that he only accepts 'sudden onset' as an indication of ME, unless the ME is precipitated by chemical exposure, in which case he calls it 'secondary ME', and then it can be gradual onset. BUT, he says that sudden onset can be obscured, and people don't always notice it, and just think that they had gradual onset. This works in various ways: a person might have suddenly got ill many years ago, and then had a long remission, and forgot all about the original event, before the symptoms slowly appeared again. Or the sudden onset event might have been very mild, and the patient didn't think it was a significant event, and as time goes by, the symptoms become more severe until they become a serious problem.

    So it's complicated.

    Not everyone is going to be happy with the new criteria. Some people will be excluded by it. I think that this is something that we are going to have to face up to as a community, and find a way to deal with the problem, kindly, in a caring and meaningful way. Personally, I would prefer that the ICC was just used for research to begin with, because this will help select a more homogeneous cohort of patients, and give us more meaningful research results.
     
  17. Firestormm

    Firestormm Guest

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    31 July 2011: http://treatingxmrv.blogspot.com/2011/07/consensus.html

    I personally - and I don't agree usually with what Dr Deckoff-Jones writes - think that she is lamenting the fact that these new criteria are simply that: another set of criteria in the absence of clear tests and 'diagnostic markers'.

    'The problem with this newest case definition is that it allows minimization of the huge number of affected people by looking only at the tip of the iceberg. In the past, I haven't been too interested in what they call it; it seemed like little more than semantics to me. I thought that case definitions would surely take a backseat to viral load measures.

    But it hasn't happened yet. When I read the Science paper, one of my first thoughts was, thank God, my daughter will be able to walk into any doctor's office and say, I have XMRV, without being subjected to ridicule, but that hasn't happened yet either.

    We are forced back to case definitions, the search for markers to prove a biological basis and fiddling around the edges with respect to treatment. Now in practice again, I can't bring myself to use CFS as a diagnosis, because it's a perjorative and will be used to deny my patients treatment. There is no code for ME, but all the components of the illness can be coded separately.'

    As I have said previously in some respects this 'new' criteria does not get us off the merry-go-round. However, the finer details have yet to be produced and maybe (doubtful), they will specificy some sort of objective testing that will confirm a diagnosis more than happens at present.

    With these criteria - as with any other - patients can effectively tell a doctor that they have 'ME'. I had hoped this would not be the case whether I personally 'qualify' or not.
     
  18. twopenneth

    twopenneth

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    Please could you add your thoughts regarding the information spread by Professor Wessely et al.
    http://38degrees.uservoice.com/foru...s-campaign-of-cruelty-a?ref=comments#comments
    Alleged death threats aside: (Which I dont condone) Is the outburst of alleged death threats a response to the very recent international New Criteria for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome that was unveiled http://www.meassociation.org.uk/?p=7173
    and the promise of appropriate treatments for M.E. patients from the Whittemore Peterson Institute in the USA. http://cfspatientadvocate.blogspot.com/2011/06/red-letter-day.html

    A group of people with a condition ME/CFS are incapacitated by illness. The UK medical establishment presently develop guidelines and policies for M.E patients. They exclude appropriate care services and treatment. I suspect the government health departments are using Professor Wesselys ideals as a channel for their policies on how to manage M.E. patients.

    Unfortunately the type of research that Professor Wessely endorses has outcomes that maintain a system that that does not care for the ME/CFS sufferer and refuses them insurance claims etc.
    The scientifically and newly agreed international criteria for identifying adults and children with ME/CFS is the real threat to the Department of Health an organisation whose leaders may probably be worried because of cost implications.

    In the UK the new criteria should leave Professor Wessely, Professor Mclure and Dr Crawleys criteria for diagnosis M.E /CFS invalid and expose the potential abuse that they are condoning by subjecting genuine ME/CFS adults and children with genuinely ill patients with mental illness only.

    With this clearer definition of ME/CFS diagnosis those that promote that the disease ME/CFS is real but may be treated with talk therapies may be less likely to include adults and children with mental illnesses in their research and claim they had M.E/CFS. A clearer and better definition of the symptoms and illness would invalidate Professor Wesselys, Professor Mclures and Dr Crawleys ideals and methods about virology and diagnosis when dealing with adults and children who they claim have ME/CFS.

    Is there a fear that they will be debunked and their research will be seen as invalid or less significant in relation to ME/CFS research with adults and/or children with ME/CFS?

    Possibly, the real fear then is that those whom fear criticism for their double speak and purporting to want to help the ME/CFS community have a feeling of impending doom because they may be viewed as having no intellectual significance or relevance regarding their opinions about ME/CFS.

    This criticism is aimed directly at the government health departments who use people, and dodgy news papers to spread misinformation and propaganda.
     
  19. Ember

    Ember Senior Member

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    Simon Wessely does seem to be orchestrating a huge distraction, deflecting all focus away from any real threat to his research and to his "ownership" of ME.
     
  20. Ember

    Ember Senior Member

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    Is it so complicated as a clinical diagnosis? For those with sudden onset, the good news is that there's no 6-month waiting period for a diagnosis under the new criteria. For those with gradual onset, doctors maybe able to alert to early signs of ME. They seem adept at coming up with terms like "pre-cancerous" and "pre-diabetic," and patients who hear those words don't generally feel the need to be included in the disease. The criteria are flexible enough to allow for a diagnosis of atypical ME as well.

    ME is described already as a multi-symptom illness with fluctuation symptoms. Perhaps what's wanting (as you suggest) is more emphasis on its relapsing nature.
     

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