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FORWARD ME GROUP: Minutes for the meeting held at the House of Lords on December 7th 2016

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Dec 19, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    FORWARD ME GROUP:

    Minutes for the meeting held at the House of Lords on December 7th 2016

    This meeting included a presentation from Professor Stephen Holgate on the MEGA research study, which as followed by questions

    From the Minutes section on Forward ME group website:

    http://www.forward-me.org.uk/7th December 2016.htm

    [​IMG]
     
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  2. Sasha

    Sasha Fine, thank you

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    Thanks for posting this, @charles shepherd.

    When they say they want comments, what does that mean? Are they asking for things in the published academic literature, such as the new paper in Fatigue critiquing PACE's "recovery" rates?

    Is the MEA or anyone intending to collate a list?
     
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  3. Esther12

    Esther12 Senior Member

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    Thanks. First thing I did was search for 'Crawely' and didn't find anything, but will be back to look at the rest later.
     
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  4. charles shepherd

    charles shepherd Senior Member

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    Sorry - this isn't as clear as it could be

    We can comment on the process that is taking place - which we have done

    But any evidence that is going to be submitted to the 'evidence checking proces' that is about to take place at NICE, the outcome of which will form the basis for a decision on whether or not to formally review the NICE guideline later in 2017, will have to be in the form of research that has been published since 2007 that relates to either clinical assessment or management

    NICE are not really interested in the debate into causation of ME/CFS - as this is not their remit

    And NICE are not interested (at this stage) in opinion

    The MEA will be producing a list of key findings that need to be considered by whoever is looking at this evidence
     
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  5. A.B.

    A.B. Senior Member

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    Holgate still doesn't realise that by protecting Crawley, he has erased his own credibility.

    It is very clear that a large number of patients have no trust whatsoever in Crawley (see all the comments on both petitions). By pretending that this distrust and these concerns do not exist, Holgate is taking the side of Crawley and thus our distrust extends to him. No kind words, promises or grand plans can undo this as we only expect lies from the BPS school. They know how to be persuasive, but they are unable to honestly acknowledge problems and respecting patients. Just like Holgate in this story.
     
    Last edited: Dec 19, 2016
  6. Sasha

    Sasha Fine, thank you

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    Thanks. That sounds as though it should include the PACE "recovery" critique paper, for instance, since it's a critique of a management trial.
     
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  7. Barry53

    Barry53 Senior Member

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    If only they had recognised opinion for what it was all those years ago, when they established the ME/CFS guidelines.
     
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  8. Barry53

    Barry53 Senior Member

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    Provided the data includes good representative sampling of all degrees of severity (from 0% to 100%), then the above makes very good sense. Cluster analysis is a data mining technique that starts off with no preconceptions, teasing out data clusters that may not be at all obvious from conventional analysis; highlighting similarities within each cluster, whilst highlighting differences between clusters. But of course the "cr*p in, cr*p out" principle applies, so the information out can only be as good as the data in. Would have to be very careful that those at the high end of the severity spectrum are adequately represented, and not just a token representation. And because there must be no preconceptions about where the spectrum terminates at either end, the low-to-no severity end of it must also be sensibly represented. The point here is that the cluster analysis itself should be teasing out what the spectrum comprises, and what its limits are, and not be presumed by researchers constraining the input data according to their own preconceptions.

    It is pretty much agreed by all that ME/CFS encompasses a number of sub-types ... trouble is no-one has a clue what they are or how many. Cluster analysis could well unlock the secret of what those subsets are, along with what distinguishes them from each other, which would of course be a huge leap forward.

    The minutes make good sense and are actually really encouraging, so it is just such a pity that MEGA is dragged right down by the presence of EC, and Prof Holgate's continuing support for her and her ways.
     
  9. TiredSam

    TiredSam The wise nematode hibernates

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    Not the first time MEGA has been compared to a black hole.

    Well there's our first black hole discovered right there.

    Sorry to be so flippant, but I was struck by how many questions were unasked or unaddressed.

    SC wasn't even there, something else must have had a higher priority than representing patient charities. What was her role in MEGA again?
     
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  10. charles shepherd

    charles shepherd Senior Member

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    The 'powers that be' at NICE are aware of the re-analysis of the PACE trial results following the FoI tribunal
     
  11. charles shepherd

    charles shepherd Senior Member

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    This meeting was time limited to about an hour - so although quite a lot of questions were raised it wasn't possible to deal with every question
     
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  12. charles shepherd

    charles shepherd Senior Member

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    SC could not attend because she was out of the country
     
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  13. charles shepherd

    charles shepherd Senior Member

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    Sounds as though you know something about cluster analysis in relation to this dreadful term 'big data' !

    Do you have academic expertise in this area of statistical analysis?
     
  14. Sasha

    Sasha Fine, thank you

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    Not just the Matthees et al. preliminary analysis but also the Wilshire et al. critique just published in Fatigue that explains why that reanalysis was necessary.

    I hope they understand why the main outcomes reanalysis was necessary too.
     
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  15. alex3619

    alex3619 Senior Member

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    Requiring analyses to be published in peer review journals before being considered by NICE or any other agency is bureaucratic double speak. Don't they have people capable of evaluating scientific papers? Or is everyone lacking the necessary competence? Or is it that their bureaucratic rules ignore scientific commentary? Not everything in science is published in journals. The flaws of PACE are both severe and obvious. How can it be missed and whoever is missing it claiming to be competent? This is more likely to be a political than a scientific issue.
     
  16. Valentijn

    Valentijn Senior Member

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    Seriously. It sounds like "We will ignore blatant and fatal flaws until they are exposed in another publication."

    It makes the reviewers look shockingly incompetent - if a bunch of patients can analyze research, why can't they? Do they just read all of the abstracts and assume they're complete and accurate, unless some other abstract says otherwise?
     
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  17. TiredSam

    TiredSam The wise nematode hibernates

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    By the same token:

    I found Prof. Holgate's attempt to bluff his way in astro-physics in order to portray the arguments of patients with legitimate concerns about MEGA as "some people" (there's that phrase again, beloved of old ladies in the queue at butchers loudly gossiping about the woman behind them) having "difficulty with the concept" to be patronizing bluster.

    Leaving aside the fact that many on this forum could give Prof. Holgate a run for his money in the astro-physics department, it just looks to me like another example of the standard BPS technique of stealing from the language of science in order to shroud their wisdom in mystery too complex for mere mortals, or, heaven forfend, patients.
     
    Last edited: Dec 20, 2016
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  18. trishrhymes

    trishrhymes Senior Member

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    If anyone's interested, Holgate's answers on MEGA at this meeting are also being discussed on the 'New MEGA study website' PR thread - I won't repeat my comments here...
     
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  19. TiredSam

    TiredSam The wise nematode hibernates

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    Well in that case allow me to repeat one of your comments from that thread:

    Because it's a perfect example of one of the concerns that wasn't even raised at the meeting.
     
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  20. user9876

    user9876 Senior Member

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    I think there are big issues around the quality of the data prior to using any sort of cluster analysis or machine learning techniques. Physicists look at their data and what to collect using knowledge of underlying theories and of the noise and receiver characteristics of measurement equipment. None of this seems to be being done here,

    I think there are issues around:
    1) The dynamics of ME and understanding when and what state patients were in when samples were taken. (Depends what is being measured but are the samples different after exertion (perhaps getting to the test place), what about when PEM is a factor).
    2) By not carefully choosing a sample there could be issues around noise added into the data. For example, if co-morbid disease is not taken into account (as well as the dynamic issues above).
    3) Non-linearities in the data particularly poor quality questionnaires such as CFQ and the SF36 where if they are trying to use these to assess the level of disability then issues with the scales could cause algorithms to fail.

    More generally most cluster analysis techniques are not particularly robust to noise (especially non-Gaussian noise) and this can be an issue. Although they could be designed to deal with that by using alternative distance metrics/outlier rejection etc. But without carefully thinking through the data characteristics then it is dangerous.

    I know few people working in data analytics who would apply algorithms without having a very good understanding from subject matter experts. Which leaves me worrying at Holgate's comments.
     
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