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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Simon Wessely wins prize for "Standing Up For Science."

Discussion in 'General ME/CFS News' started by urbantravels, Nov 6, 2012.

  1. Bob

    Bob

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  2. Bob

    Bob

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    i.e. the most muddled, most heterogeneous, and least selective, cohort possible. :rolleyes:
     
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  3. alex3619

    alex3619 Senior Member

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    Hi Bob, thanks for the link, I think I read it once before but that was before I started writing a book. Yes, I consider the Oxford criteria to be the most heterogenous and least useful for research of all the definitions. As a wastebasket diagnosis it is however perfect, a huge grab bag of misunderstood, undiagnosed and misdiagnosed patients. Bye, Alex
     
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  4. biophile

    biophile Places I'd rather be.

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    Some brief comments:

    1) The London criteria "version 2" as used in the PACE Trial does require "exercise-induced fatigue" or increased fatiguability compared to pre-illness, but does not require general fluctuation of symptoms due to exertion or post-exertion symptom exacerbation, nor "post-exertion neuroimmune exhaustion", nor "post-activity relapse", etc.

    2) Participants in the PACE Trial had to meet operationalized Oxford criteria which seemingly required that fatigue must be the only main symptom. The exact wording in the unabridged protocol is: "Is your fatigue (or a synonym), the principal (main, primary) symptom (e.g. tiredness, lack of energy, weariness, exhaustion)?" The 2011 Lancet paper cleverly reiterates that the PACE results apply to patients "only if fatigue is their main symptom". In contrast, the original Canadian criteria allows multiple main symptoms and fatigue does not have to be the primary symptom, while later revisions do not even require fatigue for diagnosis as long as other criteria are met.

    3) [@Bob] The NICE guidelines (and Reeves et al 2003 recommendations for the Fukuda criteria) were only used for medical assessment to exclude alternative diagnoses, not to diagnose CFS. This was because the Oxford criteria is too sparse on details to standardize such assessments for a trial. However, some ambiguity still remains

    4) The Oxford definition paper actually states that the intention of the criteria was to reduce heterogeneity in research. Instead it has done the exact opposite and ironically increased it, which in hindsight is unsurprising.
     
  5. Enid

    Enid Senior Member

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    I do find the "proven organic brain disease" exclusion a bit of their typical vagueness. It is only within very recent years that MRI brain scans have been done (mine revealing "high intense" areas) - so they were not in a position to identify then.
     
  6. Firestormm

    Firestormm Guest

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    I don't know how this thread has entered (again) into either PACE or diagnostic criteria, but, anyway, I am grateful to Alex for those "PACE don't include that ME! Yes it does. No it doesn't" references. I had only seen the repeated and assumed short quote from White plastered all over the place before. Not saying that the waters are any less murkier but it helps to have read what Alex has posted.

    NICE spoke in terms of the presentation of symptoms i.e.. clinical presentation a la e.g. Map of Medicine which replicates NICE for use by GPs in their surgeries as easy reference guides. I mention this because as a flow chart it is perhaps easier to see the presumed process and better understand from where they are coming.

    This is only the first entry:

    It is rather thorough I feel given the circumstances (i.e. our lack of aetiology etc.) though the question remains in my mind, "How many GPs (or specialists) follow or are able to follow these guidelines thoroughly enough to ensure as correct a diagnosis as is currently possible?"

    Still. It's what we have...


     
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  7. Snow Leopard

    Snow Leopard Senior Member

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    I'm hoping I'm not missing out on much.
     
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  8. Firestormm

    Firestormm Guest

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    All depends on what you are comparing it to in Auz, Kimo-sabe :)
     
  9. Bob

    Bob

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    Just to clarify. Oxford was used as the recruitment criteria for PACE.
     
  10. Bob

    Bob

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    Unfortunately, Firestormm, I think that what you have quoted is not the diagnostic criteria, which seems to be as follows:

    The nature of the 'fatigue' doesn't seem very well defined. It just says: "characterised by ... fatigue (feeling worse after physical activity)", but "feeling worse after physical activity" is the nature of fatigue anyway, and it's not the same as delayed post-exertional-malaise.

    And then guidelines go on to say:

    Note that it does not say the diagnosis should be excluded, only that it should be 'reconsidered'.

    So it seems that, with NICE, it is possible to make a diagnosis with simple fatigue, and one other symptom, such as: 'difficulty sleeping', or 'headaches'.

    (Sorry, this is all off-topic. If anyone can clarify any of this, or point me towards a relevant critique of the NICE guidelines, I'd be grateful.)
     
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  11. alex3619

    alex3619 Senior Member

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    I posted this on another thread, but it belongs here too:


    http://pps.sagepub.com/content/7/6/689.full.pdf html
    This one is particularly interesting. DSM-V is claiming a new psychiatric disorder, it sounds familiar:

    DSM-5 Task Force Proposes Controversial
    Diagnosis for Dishonest Scientists
    Matthew J. Gullo1 and John G. O’Gorman2
    [Alex: these researchers are based in my two universities that I studied at]

    The essential feature of pathological publishing is the “persistent
    and recurrent publishing of confirmatory findings (Criterion
    A) combined with a callous disregard for null results
    (Criterion B) that produces a “good story” (Criterion C), leading
    to marked distress in neo-Popperians (Criterion D).” Diana
    Gleslo, M.D., who chairs the task force developing the fifth
    edition of the Diagnostic and Statistical Manual of Mental
    Disorders (DSM-V), said the new diagnosis will help combat
    the emerging epidemic of scientists engaging in questionable
    research practices. “The evidence is overwhelming,” Gleslo
    told reporters. “We can no longer dismiss this as merely ‘a
    few bad apples’ trying to further their career. This is a medical
    condition—one we fear may be highly infectious.”

    Alex again. This very claim is a whole chapter in my book. I was claiming it as a philosophical failure, and yes I am a neo-Popperian (actually a pan critical rationalist). It is highly amusing to me that DSM-V classifies it as a psychiatric disorder.

    Bye, Alex

    PS Please note this DSM-V article was satire and not serious, as pointed out by Suzi Chapman. It however exactly matches an argument I am constructing against the irrational claims made by people pushing the dysfunctional belief model of CFS.

    Many claims and processes made and used by those pushing the DBM of CFS match the processes claimed by many logicians of science for nonscience and pseudoscience.
     
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  12. biophile

    biophile Places I'd rather be.

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    http://www.senseaboutscience.org/pages/a4e_what_we_can_do.html
    Will Sense About Science help?
     
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  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I didn't read the article since it appears I would encounter some serious British English vs. American English discrepancies. The title doesn't transfer well. "Stands up for" in Britspeak must mean the same as "tramples all over" here across the pond.
     
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  14. Bob

    Bob

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    Well, they say the British have a strong sense of irony!!! But maybe this is taking it too far!
     
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  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  16. Enid

    Enid Senior Member

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    That's odd - I thought SW denied he was researching ME after all the kerfuffle broke out (must try to find).
     
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  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Alex,

    What you have posted is a satirical piece for Perspectives on Psychological Science:

    http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2148152

    The DSM-5 Task Force is chaired by David J Kupfer, MD. There is no "Diana Gleslo, M.D" on the DSM-5 Task Force, in any capacity.

    ( Task Force: http://www.dsm5.org/MEETUS/Pages/TaskForceMembers.aspx )

    If you have flagged up this piece in other threads, you might want to add a clarification that this is a satirical piece, that the chair of DSM-5 Task Force is David J Kupfer and that this is not a proposal for DSM-5.

    Suzy Chapman
     
  18. alex3619

    alex3619 Senior Member

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    Thank you Suzy. I will look into this and post a link back here.

    Diana Gleslo does not have any internet existence aside from this article. The authors who wrote it do however. The abstract says this:

    Abstract:
    Satirical piece for Perspectives on Psychological Science.

    I wonder if its an attempt to discredit counter-arguments based on exactly the points made in the satirical arguement. I also wonder at the apparent coincidence that these authors are from the same universities as me.
     
  19. Bob

    Bob

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    You're right Enid. He has repeatedly said that he doesn't do CFS research any more.
     
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  20. Jarod

    Jarod Senior Member

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    Dang! I really thought this was a good offensive approach. :D

    Got a good laugh too.

    Be funny to know how many emails and calls of support they get from this piece....!
     

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