Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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The New MEGA poll

Discussion in 'Action Alerts and Advocacy' started by Valentijn, Oct 24, 2016.

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How should the MEGA study change to get your support?

  1. What's MEGA?

    8 vote(s)
    7.8%
  2. I'll never support MEGA in any form

    1 vote(s)
    1.0%
  3. Exclude Peter White (lead PACE author)

    81 vote(s)
    78.6%
  4. Exclude Esther Crawley (psychosocial ME/CFS pediatrician)

    84 vote(s)
    81.6%
  5. Exclude all "biopsychosocial" (BPS) researchers

    78 vote(s)
    75.7%
  6. Exclude Action for ME (AfME) from involvement

    48 vote(s)
    46.6%
  7. Exclude Association for Young people with ME (AYME) from involvement

    59 vote(s)
    57.3%
  8. Exclude the ME Association (MEA) from involvement

    3 vote(s)
    2.9%
  9. Require some direct (not charity) patient involvement

    35 vote(s)
    34.0%
  10. Require direct (not charity) patient involvement in all stages

    56 vote(s)
    54.4%
  11. Require direct (not charity) patient approval of study design and changes

    40 vote(s)
    38.8%
  12. Require fully open sharing of anonymized data

    84 vote(s)
    81.6%
  13. Ensure a representative sample of severe patients

    79 vote(s)
    76.7%
  14. Require PEM for diagnosis

    74 vote(s)
    71.8%
  15. Require Canadian Consensus Criteria (CCC) for diagnosis

    48 vote(s)
    46.6%
  16. Require International Consensus Criteria (ICC) for diagnosis

    31 vote(s)
    30.1%
  17. Require IOM's SEID criteria for diagnosis

    15 vote(s)
    14.6%
  18. Other (please describe in the thread below)

    9 vote(s)
    8.7%
  19. MEGA is perfect as it is

    0 vote(s)
    0.0%
  20. I'll support MEGA even if no changes are made

    4 vote(s)
    3.9%
Multiple votes are allowed.
  1. Valentijn

    Valentijn The Diabolic Logic

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    An updated poll, with multiple answers allowed since the last one was getting unweildy. Votes can be changed/added, so changing options (if there's an error, etc) won't be a problem. But it's at the maximum number of options already, so it would be problematic to add additional options.

    Please save debates regarding understanding of MEGA, pros and cons, etc, for elsewhere. This thread is merely for collecting responses and feedback on the poll itself.
     
    Last edited: Oct 24, 2016
  2. A.B.

    A.B. Senior Member

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    Thanks for setting up this poll. May I suggest adding the option "Patient involvement through several representatives chosen by all notable UK charities".

    I'm not sure how "direct patient involvement " would work.
     
    char47 likes this.
  3. Valentijn

    Valentijn The Diabolic Logic

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    I think that's getting into details of how things would be implemented, rather than just seeing what everyone wants in general.
     
    Chezboo, AndyPR and BurnA like this.
  4. A.B.

    A.B. Senior Member

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    Ok. I would also not support MEGA if it turns out that the budget only allows for basic testing that is unlikely to provide meaningful information. The "it's really a psychosocial questionnaire study with some biological measures thrown in to sell it to patients" scenario. The BPS lobby would love getting 12000 fatigue, anxiety, depression questionnaires filled in by patients while the underfunded (due to sheer number of patients) search for biological markers finds nothing!
     
  5. snowathlete

    snowathlete

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    UK
    It's not Action for Youth ME it's "The Association of Young People with ME (AYME)"

    Not to be confused with The Young ME Sufferers Trust (TYMES) which does an excellent job of protecting young people with the disease and is totally against the BPS crap that AYME promotes.
     
  6. Hutan

    Hutan Senior Member

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    New Zealand
    Great poll @Valentijn and thanks to Andy too who got the ball rolling.

    This is just a comment, I'm not wanting the survey changed.
    Re 'Remove all "biopsychosocial" (BPS) researchers'

    I only have a big problem with the researchers who
    a. aren't scientific and produce rubbish work;
    b. promote GET and CBT as effective treatments despite all evidence to the contrary; or
    c. are determined to find that ME/CFS is caused by faulty thinking and behaviour.

    Maybe we all know what we mean by 'BPS researchers'. Maybe they would fit all of my criteria, from a to c.

    But I'm not bothered about, for example, a genetics researcher with a good scientific record who believes that if a patient is emotionally stressed then they are likely to have less chance of recovering. That researcher might therefore be classed as, and might think themselves to be, a person comfortable with the BPS construct. But they would not be a 'BPS researcher'.

    The distinction might be worth making later on when the results are interpreted. We don't want to be thought-police or dictate the outcomes. We just want good science done and researchers who aren't determined at all costs to find a subset of the participants at least that they can continue to inflict their CBT/GET on.

    Yes, I should have gone to bed. I've been trying to make this post make sense for way too long.
     
    dyfalbarhau, FredaF, Barry53 and 3 others like this.
  7. Valentijn

    Valentijn The Diabolic Logic

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    Fixed that.

    I also changed "remove" options to "exclude", as some potentially objectionable people/charities weren't involved (yet), but some patients might want to keep it that way.
     
    concepcion and snowathlete like this.
  8. potbatch

    potbatch

    Messages:
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    184
    Leeds, UK
    Thanks for this. Would it be worth adding 'please tick all that apply'? As it stands, I've ticked to exclude all BPS researchers. Uncertain whether I also need to tick seperately to exclude White and Crawley. So may make results hard to interpret. Similarly, if I tick for patient involvement at all stages, do I also need to tick the other two boxes about patient involvement?
     
  9. Valentijn

    Valentijn The Diabolic Logic

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    Tick every option you like.
     
  10. eafw

    eafw Senior Member

    Messages:
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    3,381
    UK
  11. Cinders66

    Cinders66 Senior Member

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    I may be slow here but I don't see how enough info is around to do this? One of the options asks about criteria we would prefer ie CCC, IOM etc - is this for the ME segment or the study umbrella which is then subgrouped?

    Is this study going to have PWME represented by about 1000 and the rest non ME but fukuda CFS, undiagnosed fatigue, MS, anxiety and matched by healthy controls or something like that? Prof. Jonathan Edwards said about 1000 of the 10-12 000 should have ME, is that 1000 including children or just adults ie 1/10 adults in the study will need to meet ME criteria? What portion will be undiagnosed fatigue, an equal number to ME or more than ME? If 9/10 adults don't have ME is the study going to be more about defining what ME isn't that what ME is?

    We are told in the study Q & A that NICE criteria will form the initial umbrella, then Holgate blog talks about IOM, is he meaning IOM criteria replace NICE cohort as the broader group to be subgrouped or his he suggesting that IOM represent the more severe forms of CFS /ME ?


    Basically what I don't understand with the poll is its questions on criteria - are you asking if PEM or CCC etc should be required for all the sick fatigued included in the study or just those being required to meet ME criteria, which according to prof. Jonathan Edwards might constitute 1000 of the 10-12 000.
     
    Last edited: Oct 24, 2016
    Barry53 likes this.
  12. Wildcat

    Wildcat

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    .
    The IOM Criteria does not exclude patients with other conditions. For diagnosis it is the case that patients with other conditions could of course subsequently develop CCC/ICC ME. But for research purposes such a cohort muddies the water.
    .
     
    FredaF likes this.
  13. Valentijn

    Valentijn The Diabolic Logic

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    The question is about what you want for the entire study. Do you want ME patients with PEM to be a subgroup or the entire group?
     
    BurnA and AndyPR like this.
  14. Yogi

    Yogi Senior Member

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    Thanks for this.

    Other- to include charity involvement as IiMe,. Tymes trust and 25% severe group.


    This will be difficult although.

    They did not want to get involved with CMRC originally because it was a fatigue based set up and not neurological G93.3.That is what the remit was and needs to be changed.
     
    FredaF, Countrygirl and Jan like this.
  15. lnester7

    lnester7 Seven

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    USA
    I like the idea of classifying the patient as
    Patient A, meets entry criteria: PEM,IOM,ICC, CCC
    Patient B, Meets entry Criteria: CCC Only.

    So we start to see the difference of PEM and no PEM patients on publish studies. Also the CCC vs IOM data.... If one of the Criteria fall the data can be reanalyzed with no mayor cost.
     
    FredaF and Comet like this.
  16. JohnM

    JohnM

    Messages:
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    West Yorkshire
    Likewise, I'm concerned that the majority of the funding sought will be spent on yet more psychosocial FATIGUE questionnaire studies. I cannot help but sense that the primary focus of the MEGA project is to investigate FATIGUE, under which umbrella ME can continue to be placed by the powers that be - the 'omics experts unable to meet their initial aims, unable to undertake much of the work they'd like to do, due to severely limited funds.

    FATIGUE, debilitating as it can be, is not ME.

    I am unable to support this project at this time, without further DETAILED INFORMATION which addresses valid concerns expressed on PR and elsewhere. I want to support biomedical research studies into our disease, but am yet to be convinced on this particular study.

    As an aside, couldn't help but note the interchangeable usage of ME/CFS, CFS/ME and even chronic fatigue syndrome in the MEGA team bios .. pedantic happen, but also instructive? I remember a conversation with an OT one time and she wanted to refer to my illness as chronic fatigue syndrome, only a label she says, and not important. I replied, that being the case I prefer to use ME (as defined by ICC) .. the look of horror, hehe!
     
    FredaF, Yogi, Woolie and 1 other person like this.
  17. BurnA

    BurnA Senior Member

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    The interesting results so far are the ones which show the lowest no. of votes.
    @charles shepherd did you get a chance to see this yet ?
     
    FredaF, Yogi, TiredSam and 1 other person like this.
  18. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
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    Germany
    Looking at the 0% who have voted for question 2, it looks like the vociferous minority who want to strangle it at birth have decided not to vote. Typical.
     
  19. Barry53

    Barry53 Senior Member

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    Two things:-
    1. Providing the numbers were sufficient for good statistics, I would be fine if people were additionally included, not meeting full ME criteria. BUT only provided the data unambiguously distinguishes between them, and captures which criteria everyone does and does not meet. Otherwise any analysis, big data or otherwise, will be doomed from the start. This was my "other". And of course there definitely has to be a statistically viable inclusion of people fully meeting the criteria.
    2. Regarding the "for diagnosis" questions, I took that as literally meaning for an ME diagnosis. But I was not sure if the question might be unintentionally conflating it with "for inclusion", which given my point '1' above, could potentially skew the poll considerably if misinterpreted.
     
    Countrygirl and Hutan like this.
  20. BurnA

    BurnA Senior Member

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    Any more voters out there ? Would be nice to get everyones feedback.
     

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