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The IACFS/ME Conference in Ottawa: Sept 22-25, 2011

Discussion in 'General ME/CFS News' started by Gamboa, Jul 31, 2011.

  1. eric_s

    eric_s Senior Member

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    Probably, but i'm a bit afraid this might hurt us. Are there any links where we can get more details? What name does he use, ME, ME/CFS, CFS?
  2. Bob

    Bob

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    I believe that Lenny Jason has been doing work with the CCC for years, in order to make them a better working definition for doctors.
    I think he's being doing large scale epidemiological studies to give the CCC more weight and meaning.

    The ICC cites loads of Jason's brilliant (in my opinion) work that he's done over the years.
    What I don't understand is why Jason wasn't involved in the ICC.
    It almost seems like Jason's brilliant work on the CCC is redundant now.
  3. Ember

    Ember Senior Member

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    Not if he can help it, by the sound of things. According to Cort, Jason is criticizing the ICC, suggesting that using more symptoms (eg ICC) runs the danger of bringing in people with psych diagnoses.
  4. Dolphin

    Dolphin Senior Member

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    Personally, I very much like the following aspect of the revised CCC (by Jason et al):

  5. Ember

    Ember Senior Member

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    None of the 2010 Revised Canadian ME/CFS criteria (by Jason et al) seem to meet the description of the criteria that Jason apparently presented at the conference. There Jason's ME criteria had 4 parameters and required acute onset. Were these yet another set of criteria? Are they as yet unpublished?
  6. Lynne B

    Lynne B Senior Member

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    Hi, SOC,

    I've long been puzzled as to why my husband and I should be excluded from the ME categoryalthough we have most of the symptoms of the new ICC ME classificationssimply on the basis of onset. In post 144, you quote the merckmedicus post on AIDS and interpose ME for HIV/AIDS and it all makes sense to me. We both had prior (viral) illnesses occurring in different decades that left lasting legacies of weakened immune systemsmine was EBV way back in the 1970s, (which left me with IBS and much else besides) and his was in the early 90s with an unknown cause that left him working a four-day working week from then on. Then in October 1996 we both began experiencing ME symptoms, starting with new adverse reactions to several foods in our daily diet, followed by many other ME symptoms over the next weeks. No sudden onset, but we had then, and still have, the major ME symptoms that meet the ICC's new guidelines.

    So I'm interested in your adaptation of the HIV/AIDS description of onset, sudden or otherwise, to explain the supposed difference between sudden and gradual onset. I haven't yet managed the copy/paste mechanism for posts, but you state "Imagine this statement applied to our illness: 'Patients who have a weakened immune system are more prone to experiencing a variety of infections and diseases, referred to as ME-defining illnesses. When an ME-defining illness occurs, it is a sign that a patient has entered the "late stage" of (whatever we have) and is developing ME. Many individuals discover they have (whatever causes ME) at this particular stage." If your proposal is correct, it requires lots of viral illnesses we have previously thought of as completely different to one another (Lyme, EBV/CMV/HHV6 etc.) to end up with the same outcome. Your hypothesis may not prove to be right in the end, but it's still something to ponder.

    Regards, Lynne B
  7. searcher

    searcher

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    SOC- I believe that your theory is going to be proven eventually. I thought for a long time that I didn't have ME/CFS because my onset felt gradual. But something definitely happened when I was 18 to disrupt my immune system. I started getting non-stop viral infections when I was 18 (after a childhood remarkably free of illness) and was confused as to why my immune system was so bad. The fatigue didn't start until I was 28, and the debilitating symptoms didn't start until a few years later (after yet another "flu.") I am cautiously optimistic that all of the pathogen studies will identify an underlying cause to the immune dysfunction. The thing that scares me a bit, though, is how much money has been put into MS research without the cause being determined.
  8. Snow Leopard

    Snow Leopard Senior Member

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    I'm rather curious about these points, especially the first..
  9. Ember

    Ember Senior Member

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    In early August, Fred Friedberg set our expectations for the discussion of the ICC definition: The lead author of the new criteria, Dr. Bruce Carruthers, will be a featured speaker at the IACFS/ME Research and Clinical Conference in Ottawa, Sept. 22-25, 2011.... He will share the podium with prominent CFS/ME researchers Dr. Leonard Jason and Dr. Elizabeth Unger in a 90-minute, case-definitions symposium that will allow plenty of time for Q and A about the new criteria. I expect this to be a lively session.

    On September 24, James Deagle, Editor-In-Chief, The Journey: Life & Living with ME/CFS and FMS A publication of the National ME/FM Action Network, reported on the ICC presentation this way: "Bruce Carruthers, M.D. (a medical advisor with the National ME/FM Action Network) presented the 2003 Canadian Consensus Criteria, which he co-authored, and is currently used worldwide as one of the standard definitions for ME/CFS. Dr. Carruthers said he hopes "that this case definition and its descendents will continue to emphasize both the clinical/epidemiological/research realms of observation and challenge all participants to integrate them into a mutual confirmation/deconfirmation process that characterizes both clinical medicine, epidemiology and science in general."

    Back in July, Lydia Neilson, a key supporter of the CCC, made her position on the ICC clear with her first comment: I wish to advise that neither myself, or the National ME/FM Action Network had any role in this new definition nor were we asked to participate.... At this moment, the only aspect I can comment on is that I feel personally that it is premature to separate ME from CFS.

    If the ICC didn't find many friends in Ottawa, it's our loss.

    The year after Fukuda was published, Hillary Johnson quoted a dispirited Dan Peterson: I'm not sure the momentum is there from the patients. If I had a disease that was totally disabling, I would be much more angry and aggressive than most of the patients I know.
  10. mon me

    mon me

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    I am curious too but will never know for sure whether the vaccines I received soon after the initial sudden viral onset changed my intial PVFS diagnosis to ME in the end. * Note the word "contribute" and not cause.
  11. Enid

    Enid Senior Member

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    Interesting possible connection between MS and ME SOC - my own Neurologist finding so many signs of MS present - and theorised viral cause. The sheer range of symptoms (eg. GI) threw him.
  12. Guido den Broeder

    Guido den Broeder *****

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    It would, but it does not happen that way. The transition period is only 4-7 days.
  13. Tristen

    Tristen Senior Member

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    I agree that it's fun to intellectually challenge ideas. And with this topic, I would also add that it may help some people uncover some vital information. I would bet there is a percentage of people on this site alone who have settled with the me/cfs diagnosis, when they may actually have something else that's treatable. This discussion sure gets me thinking along those lines.
  14. fla

    fla Senior Member

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    Like SOC I believe there are long term modern immune insults (EMF, pollution, chemicals, radiation, stress, vaccines, retrovirus, genetics) that are tilting the balance of a healthy immune system. Eventually the balance shifts over to an unhealthy immune system for some people (ME, MS, Autism, Parkinson's, autoimmunity...). We are left with confused scientists studying the final trigger, which varies from patient to patient, none of which explain the overall shift of immune system balance alone.

    kmhn93l.jpg

    This thread posted a paper by Olle Johansson looking at the immune changes triggered by EMF's. Just like Louis Pasteur was ridiculed with his off the wall theory that tiny invisible living things where floating around making people sick, the idea that modern immune insults could cause new mysterious illnesses is not yet mainstream science but some day will appear to be common sense.
  15. Kati

    Kati Patient in training

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    Ember, Lydia's response was put in context when a group of patients tried to put a shade on the ICC authors by believingthat "MEFM action was on the same side as CAA and Pandora. I believe that Lydia's answer was aimed at answering these people. it doesn't in any way discredit the ICC and its author's scientific work.
  16. Tristen

    Tristen Senior Member

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    It would be nice to see some quality unbiased epidemiological studies done on Immune system problems. For ex, I know that food allergies are almost unheard of in Africa, yet common here.

    I suppose some of this info is available, but one needs to consider the source for credibility.
  17. Ember

    Ember Senior Member

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    Thanks for your response, Kati.

    I don't understand it though. Lydia's comments were make back in July. Referring to ME and CFS, she added that separating the two at this time will cause much harm to those ill. There seem to be those who are loathe to greet a descendent of the CCC.

    What do you make of James Deagle's reporting that the CCC was presented at the conference rather than the ICC?

    James Deagle is Editor-In-Chief, The Journey: Life & Living with ME/CFS and FMS A publication of the National ME/FM Action Network.
  18. Kati

    Kati Patient in training

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    Well Ember, I am not ME/FM action nor I represent Lydia.

    However I think what she means is that most physicians in North America do not know the difference between ME and CFS. Furthermore, I advance that 99.9 % of all physicians here do not know what ME stands for (a neurology resident almost fell off her chair when I mentioned myalgic encephalomyelitis, she said the E word is a very very serious disease.)

    IF most drs don't know the difference, those that get diagnsed with CFS will fall into the harm of the CDC with their CBT and GET and denied disability insurance and this will create more harm.

    We need objective biomarkers.


    In regards to James Deagle (the journey) His first article got me really angry (talking about Lightening Process) so I stopped reading his nonsense.
  19. Nielk

    Nielk

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    Which came first - the chicken or the egg?

    We need biomarkers - no doubt about it, that's the most important issue. Yet....if we are not ready to refine the patient cohorts that really represents this disease, we will not find the biomarkers because we will be studying a washed out patient model.
    It seems like the US is not ready to make that move and is clinging to CFS. What biomarkers are we going to find? We first need to select who we are studying.
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The biggest biomarker they have know about for decades is nk dysfunction. The whole ottawa conference i was hoping to hear more about other stuff then just xmrv like biomarkers. bond university in australia has just finished an 18 month study on cfs finding nk dysfunctions as a biomarker as well as other dysfunctions that were not told to us but were going to be released in the conference. So far i think i have heard that their presentation was interesting, thats it. Im sure there is alot more interesting stuff coming out of the conference on biomarkers, all this info is there they just have to teach the dam doctors about it and get these tests out there in main stream medicine.

    cheers!!!

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