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Identifying Defining Aspects of Chronic Fatigue Syndrome via Unsupervised Machine Learning and Featu

Discussion in 'Latest ME/CFS Research' started by Bob, Feb 1, 2014.

  1. Bob

    Bob

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    I think this article may help to explain some of Jason's thinking:

    To PEM or not to PEM? That is the question for case definition.
    By Leonard A. Jason, Ph.D. and Meredyth Evans
    DePaul University
    27 APR, 2012
    http://www.research1st.com/2012/04/27/pem-case-def/

    It's a long article, so here are some extracts:

     
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  2. Firestormm

    Firestormm Guest

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    @Bob Thank you :) Above and beyond the call... but extremely useful. I was not aware of the above article and will read with interest later. It seems to hit the proverbial on the head! :)
     
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  3. Firestormm

    Firestormm Guest

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    I am left feeling from having read the extracts, that we really need to better distinguish these symptoms from the feelings experienced after a 'normal' person 'exerts'. I am not sure current attempts really cut the mustard.

    PEM has been the hardest distinguishing symptom for me to have to 'sell' to others - without a doubt. As I said before, I was often faced with the answer "Well, who doesn't feel like that?"Especially when I am in the company of my much older parents! :)

    That is why for me, it is the delayed onset of a flare in symptoms from doing more than my usual day-to-day activities - which distinguishes PEM from usual symptoms. I mean as I said, I feel like I have the flu all the time. Day in and Day out.

    When I rest up, my muscles for example, are in aching, burning, pain. When I am engaged in an activity - like now sat at my desk typing away - they are still aching and burning with pain, but I notice it most when I am resting because I don't have this distraction.

    Last night was awful for the feelings in my calves especially for some reason. But then that's the USUAL for me and it applies to my thighs, arms and chest also. It is like having the flu minus the snot!

    PEM is delayed. It is the result of overdoing something - like including a walk in my usual routine on a Monday or Thursday when I am editing - or spending too long on an article editing - or pushing myself beyond what I feel comfortable in doing.

    Sometimes it is manageable - I can now allow myself time to cut-back when the 'flare' begins and can rest to accommodate.

    Sometimes I can plan for the over-exertion and accommodate it at the time by cutting back on other activities or doing things in advance to save me doing them at the time e.g. having meals ready.

    Sometimes the PEM doesn't seem to hit, and I am surprised, only to find it hits the following day, or abnormally affects my ability to sleep. And sometimes I get away with it.

    So on an individual level I think it is very hard to define, let alone to test for with a definition that might seek to better determine sub-sets.

    Maybe specific and objective tests will help to better determine what PEM is and how badly is affects individuals.

    And maybe they will one day determine that e.g. the muscle problems are in fact remedied with a drug, that negates the symptoms generally and removes this aspect from any 'flare' following over-exertion.

    Still. It's all interesting stuff. Thanks Bob :)
     
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  4. Firestormm

    Firestormm Guest

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    By total coincidence, I am populating my local ME charity website with symptoms, and am using this from the Chief Medical Officers Report submitted by the Independent Working Group on CFS/ME in 2002 AKA Gibson Report (it directly fed into and was used by NICE for their Guideline - indeed they took their text from it in parts):

    Anyway, I thought it rather good and best exemplifies my own experience of PEM:

    Of course it still leaves the question - is this the 'prime indicator' of ME or CFS/ME or CFS? Some in the recent IOM conference - indeed the majority - would seem to favour it being the prime indicator of Myalgic Encephalomyelitis... and maybe it is - but I think proof of distinction is still required and that will only come with more research...
     
    Last edited: Feb 5, 2014
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  5. aimossy

    aimossy Senior Member

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    Really educational thread Bob and Firestormm. Thanks!
     
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  6. Bob

    Bob

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    I think we should keep a close eye on Julia Newton! I find some of her work fascinating; what little I know about it.
     
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  7. Wildcat

    Wildcat Senior Member

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    Firestorrm: "and am using this from the Chief Medical Officers Report submitted by the Independent Working Group on CFS/ME in 2002 AKA Gibson Report"

    .

    Errr??? ..The CMO's WG Report (2002) was the work of the Chief Medical Officer's Working Group which sat from 1998-2002. The CMO's WG Report was written and published in 2002, way before the CCC was published, or even known about in Britain.


    The Gibson Inquiry (2006), was an unfunded Inquiry of no status (ie not a high level Inquiry, not a Select Committee, not even at the low level of an APPG Inquiry) with Parliamentarians on the Committee for a few months in 2006 (ie after the CCC). The Gibson Inquiry was very controversial in its choice of committee members (Lord Turnburg and Baroness Cumberlage), and that not all the evidence sent in was actually read by all members of the committee (amounts were found stuffed into a cupboard), and for the committee's eventual report with contradictory/controversial statements, particularly about children with ME.


    What the Gibson Inquiry DID conclude and recommend was a much higher level Inquiry into the vested interests, interests in the Insurance industry, of certain Psychiatrists who have been influential in the UK ME policy.



    Few people in Britain give the NICE Guidelines much enthusiasm, all but two of the charities and the majority of local ME Groups, formally concluded it was Unfit for Purpose.

    .

    The CCC supercedes the diagnostic guidelines part of NICE.

    .
     
    Last edited: Feb 5, 2014
  8. Firestormm

    Firestormm Guest

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    @Wildcat Thanks I got confused and have corrected. It wasn't the Gibson Group report, it was the report that presented patient/expert evidence to the Gibson committee i.e. it was the result of the Independent Working Group into ME/CFS. It is still a description of PEM that best meets what I consider PEM to be - which was my reason for posting it. And even better than CCC in my humble opinion.
     
  9. Wildcat

    Wildcat Senior Member

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    Firestorrm.
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    The CMO's Working Group was the Working Group of the Chief Medical Officer of the Department of Health , ie part of government, 1998-2002.


    The Gibson Inquiry (2006) was labelled independent because it was independent of government (still parliamentarians, but not part of government, as the CMO is), but a Group/Report of no status.


    Are you quoting from the CMO's Report or the Gibson Report? Its pretty difficult to confuse them due to the date of each of them, due to the style of writing, and the structure of the reports, the makeup of the Groups, and the circumstances surrounding each of them.


    One of the reasons that NICE was deemed Unfit for purpose by so many groups/charities is the NICE recommendation of GET for moderately ill patients, when so many of the 25% Group (severely/very severely ill) were Not severely/very severely sick, bedbound, tubefed etc, before GET.
    They were moderately ill before GET.

    .

    Its also difficult to see why any previous UK Report should be preferable to the CCC/ICC as now urgently recommended by 50 plus world ME experts. We sure have benefitted from great policies in Britain (NOT).



    Am Sure that many US ME patients would love to come to Britain and experience our ME policies. Well, no, I'm sure they wouldn't.

    .


    .
     
    Last edited: Feb 5, 2014
  10. Firestormm

    Firestormm Guest

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    @Wildcat Why not click on the link I provided? The Report is called:

    It was established in 1998 and the Report was presented in 2002. Allen Hutchinson was the Chairman.

    Having spent some time over the years reading the NICE Guideline, I can state that there are parts of it that are quotes taken from this report. The report itself contains a lot of patient comment and concerns. As I said, it is only a shame - in my own mind - that NICE did not take on board more from this report. I am sure there are 'better' sources but in the example above and for the purposes of this thread: I thought the description of Post Exertional Malaise was pretty damned accurate for me.
     
  11. Wildcat

    Wildcat Senior Member

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    NICE was almost universally condemned by patient local groups and charities.



    The NICE Guideline, like the CMO’s WG Report, gave the patients a few crumbs, whilst maintaining the Chronic Fatigue construct, maintaining the construct of ‘Illness beliefs’, and recommending only two ‘treatments’ (CBT/GET). The CMO Report advised limiting investigations (testing), for example. So its no surprise that the Newcastle Research Group uncovered a 40-50% misdiagnosis rate, ie patients who were wrongly diagnosed with ‘CFS’ by the Oxford criteria and later according to the NICE Guidelines . ..


    The CMO Report recommended that GET and CBT are the "most promising treatments". The Report emphasised the psychiatric point of view with the inclusion of Illness Beliefs ie. if you believe that you have a physical illness you won’t get better.



    Those who made official Responses to the NICE last draft, and those who were too ill to do so, were not impressed with the NICE final published Guideline. There were some very long and substantial Responses to NICE from charities, local groups and individuals, and many shorter Responses from patients who could only write a little. But precious little evidence of them in the final NICE Guideline.



    Amongst the problems of the NICE Guidelines were that its Guideline Development Group consisted of Non ME experts, and its reliance on the York Systematic Review of research. The much discussed and criticised York Review reviewed Professor Wessely’s Database of Research, and Papers on ‘GET and CFS/ME’ but did not review Papers on ‘Exercise and CFS/ME’. So, the adverse reactions to exercise were not explored, as research and other evidence were not included in the York Review.



    Of the three patient Representatives on the NICE Group, Tania Harrison (of the charity BRAME) resigned in protest and stated that she could not in all conscience put her name to the Guideline.





    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~





    Links to all the Charity and Patient Group and individual Patient and Carer responses to NICE are linked from this page:


    http://www.investinme.org/iime campaigning-nice-guidelines iime response.htm


    NICE Documents:

    The official page for the NICE Guidelines on CFS/ME.

    Click here

    Comments Made by Registered Stakeholders (including many of Invest in ME's responses), and responses from the NICE Guideline Development Group

    Click here

    Dr Ian Gibson MP's Witness Statement to the NICE Guidelines

    Click here

    NICE Review of Guidelines - Guideline Review Consultation Comments Table - 2011
    PDF
    (you have to link to the IIME page to access this PDF)


    .
    ..
    .
    PDF
     
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  12. Firestormm

    Firestormm Guest

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    ProHealth published the article earlier: http://www.prohealth.com/library/showarticle.cfm?libid=18642
     
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  13. Bob

    Bob

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    These are the accuracy figures for Fukuda, CCC and ICC, based on the methodology used by Watson et al. (I'm not certain but these results may be based on the relevant questions included in the DSQ rather than on a diagnosis directly using the diagnostic criteria themselves.) (I'm not aware of any other accuracy figures for Fukuda, CCC & ICC by other researchers, but it would be interesting to compare such figures with this study, and with Jason's other similar studies that we've been discussing.) ...

    Table III
    Table III.PNG
     
    Last edited: Feb 14, 2014
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