1. Patients launch $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!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

ICC Primer - International Consensus Primer for Medical Practioners

Discussion in 'General ME/CFS News' started by Bob, Oct 4, 2012.

  1. clive powney

    clive powney Senior Member

    Messages:
    166
    Likes:
    93
    coventry
    I think this paper is one of the biggest steps forward that I have seen since becoming ill (10 years ago). Unfortunately in the UK it may take another 10 years before NICE can be arsed enough to start using it in anger. By that time there may well be a cure and it will take another 10 years for the UK to catch up on that - by that time I'll probably be dead!
    Enid likes this.
  2. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,780
    It avoids confusion for the ICC panel to leave the ME/CFS label behind now. Dr. Lipkin used an ME/CFS (CCC) cohort, but the multicenter study adopts the CFS/ME label anyway. It refers to the “2003 Canadian consensus criteria for ME/CFS” at a couple of points, but also refers to the “2003 Canadian consensus CFS/ME criteria (sic).” Its subjects are called CFS patients.

    Here, the ICC panel is abundantly clear concerning the use of ME:
    They add:
    Certainly nobody can claim that CFS and ME are the same according to the ICC.
    Dan_USAAZ likes this.
  3. SOC

    SOC Moderator and Senior Member

    Messages:
    5,291
    Likes:
    6,278
    USA
    That's great news! If we can find a way to get more GPs to have that reaction, we'd make a big move forward.
  4. Dolphin

    Dolphin Senior Member

    Messages:
    6,701
    Likes:
    5,514
    I hope you're right - it would make me more likely to use it.
  5. Dolphin

    Dolphin Senior Member

    Messages:
    6,701
    Likes:
    5,514
    Initially, I thought there were only some of the authors - I'd missed that the way the rest of the authors are at the back - maybe they thought so too?

    ETA:
    I've just compared the list to the criteria paper list. There are actually a few changes:

    Not on ICP:
    B Baumgarten-Austrheim
    Judy Mikovits
    Martin Pall

    New (i.e. weren't on criteria paper):
    New: Kathleen Light
    John McLaren-Howard,
    Bob likes this.
  6. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,974
    Cornwall England
    October 6 summary of CFSAC meeting, from Jennie Spotilla: http://www.occupycfs.com/2012/10/06/another-cfsac-done-gone/

    I have read the ICC Primer. I have long-held issues with the 'consensus' and more-so now with the Primer itself. I think the (lack of) reaction to its' publication might reflect the general feeling of confusion and 'fed-upness' - that yet another criteria has been added to the mix in yet another attempt to define our condition without objective scientific evidence to back it or any of the 'tests' up.

    For the ICC to become the tour de force it needs more evidence that a distinct disease is there. But failing that it needs the medical community, the regulators to endorse it and accept it as such. The ICCME in my opinion is not going to challenge the NICE Guideline in the UK and from the above meeting - whilst it was referred to by all accounts - the CCC remains the criteria from which (AGAIN) to work.

    The ICC represents nothing more than more opinion from experts based on their own anecdotal experiences with their own patients using their own 'tests'. I think attempts to implement this criteria are akin to placing the cart before the horse. I can't see it will change anything or (if it were used) improve treatment for patients.

    In particular (and I'll better analyse the Primer when I get some better ability - so apologies in advance) it does buggar all to support the use of the nomenclature. Where is the new evidence to support the distinction? Are these so-called 'lesions' now being cited as evidence of ME?

    This document has to be sold to the likes of NICE and I think it fails. It needs to get published and accepted and endorsed and I don't believe it is capable of doing so. You will have patients who see these experts getting a diagnosis (or not!!) of ME and then walking back into their own GP's surgery and showing them 'proof' that is not recognised.

    I understand that the UK is rather unique in having NICE in place (and honestly thank the gods for that) - see confusion above - because I cannot see this unapproved criteria improving any treatment offered to patients and that is what we as patients are desperately wanting.

    Perhaps we can go through the Primer and highlight some aspects - I shall certainly try and do so. I just don't see that ICCME changes anything. What does it do differently? I can see what it might be trying to achieve but I don't think it does it - cart before the horse as I said - the horse being research that reveals biomarkers that can point to specific symptoms.

    I mean said biomarkers are going to happen with the CCC in place with Fukuda with a sensible approach to assessing patient suitability (see Lipkin study for example). Patients in the UK will get diagnosed adequately based on a properly applied NICE criteria and if used in research - additional scrutiny as per the above.

    We can't do much about GP/Physicians who are "slap-happy" when it comes to diagnosis and I can't see those in the UK adopting the anointed 'tests' being described in this document - not without approval. I mean the whole notion of PEM hasn't been adequately 'sold' for heaven's sake let alone any test that 'proves' it and here we are (again) saying this is the 'symptom' that defines the condition.

    I can't see that there has been as much reaction to this document as there was to the IACFS/ME Primer. As I said this could be down to confusion. Patients (let alone medical professionals and regulators) I dare say are fed-up with yet another attempt at definition.

    How is this Primer going to be used by those on this thread who feel it offers something that is not already out there? I'd also be interested (maybe) in some attempt at comparison (not of the various research criteria and definitions per se (Jason et al 2011 Myalgic Encephalomyelitis Case Definitions)) but of the IACFS/ME Primer and this ICCME one and the NICE Guideline: because I don't get it!

    Sorry Ember. I am not being awkward. I simply am fed-up and very confused. 15 years almost and here we still are - round and round in circles with little sign of moving forward.
    GracieJ likes this.
  7. Dolphin

    Dolphin Senior Member

    Messages:
    6,701
    Likes:
    5,514
    NICE looks at each therapy individually and looks at whether it is an "evidence-based treatment" and value for money. The former criterion generally means that two quality RCTs have shown the individual therapy to be useful. Basically no therapy except CBT and GET can pass that test currently. So I'm not sure how useful it is to assess a document on whether it passes a "NICE test" because if that's how the bar is set, one will have an empty document in terms of treatments.
    Bob likes this.
  8. Dolphin

    Dolphin Senior Member

    Messages:
    6,701
    Likes:
    5,514
    I think if people are making points, they should clearly distinguish between the criteria (published last year) and then this latest document. Otherwise people can be talking about different things. I remember this happening when the Canadian guidelines came out - people were using the same terms to mean different things and talking at cross-purposes.
    Bob and SOC like this.
  9. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,974
    Cornwall England
    Sorry was editing. Let me ask you this then Dolphin. How will the ICCME ever be 'sold' to NICE in order to change or even introduce a distinct clinical entity? Because I don't believe it is capable of doing so.

    The existing criteria for diagnosis used by NICE can be 'tweeked' afforded greater emphasis to PEM or whatever you want to call it now; it can be tweeked to allow for 'new' treatment options based on clinical studies.

    The ICCME is (from what I can see) asking/demanding separation of ME from 'CFS' or 'CFS/ME'. Now, as I have long said, either you are pushing for a straight name-change 'back' to ME for all or you are seeking to amend/improve the Guideline for what we have now.

    The ICCME is seeking to do both and I don't believe it is capable of that. There is nothing to support any change other than the usual anecdotal experience of experts and their anecdotally based opinions.

    Will the ICCME improve the diagnosis of 'ME' or what we have now? If so what is that assumption based on exactly? Will it mean I get better treatment and have a better chance of recovery of even an improved functional ability? If not that what's the bloody point?!

    With a research criteria the ICCME was attempting to better define the selection of patients i.e. trying to ensure they had 'ME' as opposed to something else (dependent upon what you define as ME of course). The aim being to improve the results/make them more relevant.

    But here we are with studies like Lipkin's with all the other research that has been done - are we to discount all of that and say 'well there weren't looking at ME were they - so it doesn't apply!' No. So what's the point?
  10. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,974
    Cornwall England
    Certainly. But you'll have to wait for tomorrow. I thought I was pretty clear but will review. It's late and I'm roasted to a crisp. Sorry I am not as scientific as you might like this evening :)
  11. Dolphin

    Dolphin Senior Member

    Messages:
    6,701
    Likes:
    5,514
    Firestormm, I don't have time at present to talk about criteria.

    In terms of therapeutics and the like, as I said NICE set a high standard before recommending any therapy: it needs to be seen as "evidence-based" (at least two positive, good-quality randomised controlled trials) and value for money. Virtually nothing passes this test at the moment except CBT and GET. You are right that this document won't change their minds but basically only clinical trials will change their minds.

    An extra problem with the ICP is that it doesn't give an idea of what published evidence there is for most of the therapies it mentions. The booklet "ME/CFS/PVFS - an exploration of the key clinical issues" by Shepherd and Chaudhuri does do this as I recall. The latter document is possibly/probably a better document from many situations within the NHS.

    However, the Shepherd and Chaudhuri document as I recall wouldn't give many of the suggestions in this document (the ICP). If one has a sympathetic professional who is opened to input, the ICP could be useful.

    It can be useful to be able to be able to show that an international group of professionals have the same ideas that a patient (or family member/similar) has.

    But like you suggest, a consensus document like this won't influence NICE.
    Bob likes this.
  12. Guido den Broeder

    Guido den Broeder *****

    Messages:
    278
    Likes:
    180
    Rotterdam, The Netherlands
    Evidence-based is not a high standard. A higher standard is to also demand that a treatment follows logically from the pathology. CBT and GET hopelessly fail such a standard, but several medicinal treatments are getting close.
    GracieJ and Enid like this.
  13. Dolphin

    Dolphin Senior Member

    Messages:
    6,701
    Likes:
    5,514
  14. lnester7

    lnester7 Seven

    Messages:
    1,222
    Likes:
    1,096
    USA
    In my experience, they are general accepted things as part of imunology. When I first went to GP it was dismissive, Neuro also, When I came back with my citokine profile, and my NK and T cells being low. That was something they understood. NK cell, T cells, B cells are accepted and recognized by doctors, when you prove you are Off, they will accept there is something wrong with you and then they will start working with you. I get "I know there is something wrong with you, I just don't know what or how to help you but we can try stuff".

    Now My GP suggests something, I look in my booklet and he accepts it better. I HAVE to use the tools and force him to cooperate with me. When everything else fails, Attack a Doctor's Ego. Make them feel like out of date of fools. Like you have not read all the latest research and act like a disapproving granny :lol:.
    Valentijn, SOC and Enid like this.
  15. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,974
    Cornwall England
    Inester, I am intrigued by the bolded area. In what way i.e. what treatments are suggested if you can demonstrate (presumably through private testing?) that your 'NK, T and B cell counts' are 'off'?

    This is a genuine question. I'm not out to take the **** despite what some might concur. I genuinely would like to know what treatment and (if you are able) where you got the testing done. Thanks.
  16. lnester7

    lnester7 Seven

    Messages:
    1,222
    Likes:
    1,096
    USA
    I got imunovir to raise NK and T cell. My GP didn't do anything because I already had gotten that. But because he saw something was wrong, he takes all the other crazy symptoms and work with me, medicine is for symptom relief ( Sleep meds, pain meds, cream for another issue I have) Now I can go back and he tries to address whatever pops up. He tells me that he is frustrated because he doesn't know how to help me but at least he tries.

    The neuro is offering stuff for my burning pain....This one I am having less luck with but he address symptoms too.
  17. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,974
    Cornwall England
    Thanks. So how did you determine that your NK and T cell's were in deficit? Was it a test that the e.g. neuro carried out or one you obtained privately? Thanks
  18. lnester7

    lnester7 Seven

    Messages:
    1,222
    Likes:
    1,096
    USA
    I had to have a Lumbar Puncture from neuro to eliminate MS.

    Cytokine Test is called : Cytokine Multiples - 18 (E.M Papper clinical immunology lab).
    T, and B cell: Called IMDE5 (VAMC University of MIA clinical Imunology).
    NK: Natural killer cell Function (University of Miami school of medicine)
    NK cell enumeration (This u can get in different labs)
    NK cell Activity (This one might be hard to get ).

    And the general viral/bacterial reactivation common in CFS IGM and IGG: Casaxie, Parvo, HH6v, EBV, Mycloplasma, CMV......others. All herpes virus test... This will be based on symptoms.

    Idea: You can pay a very ship consultation by skype with Dr Elander and he can order all the tests needed so You don't worry about which one and what lab to use.
    Valentijn likes this.
  19. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,974
    Cornwall England
    Thanks. So no specific treatment based on the results from either your lumbar puncture or from these subsequent tests - but a realisation from your doctor that 'something was wrong'? Again, I am not trying to play any of this down. Just trying to understand. I was also not aware that a lumbar puncture was something used to determine MS. All that I had heard and read (admittedly not very much reading) led to the conclusion MS was diagnosed based on a scan. That's useful information to know - seriously I had not heard that before and I have spoken to a lot of MS patients over the years - and others with ME who had MS ruled out (or in).
  20. lnester7

    lnester7 Seven

    Messages:
    1,222
    Likes:
    1,096
    USA
    I have lesions (ME typical ones) but not Big enough to be sure they were MS. But I have a lot of Neuro MS type issues (skip words, Balance, Drop things, writing backwards..) so they wanted to rule out MS by doing a lumbar puncture. Also they can do a spine MRI and look for lesions there.

    As for treatment, Is slow process but yes I have gotten medication (sleep meds, Florinef :angel: , pain...) So yeah I am getting better. I was in bed in July for 2 months, I am on a 7 today. I am back to work and more family time.

    Dr Just gave me LDN also looking into starting Antivirals. The issue is I got test results on Feb 2012. And they Only tackle one thing at a time to see how I react/adjust to medication so is a slow and painful process, but yes I am getting treatment.
    Valentijn likes this.

See more popular forum discussions.

Share This Page