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The MEGA project: poll on what you consider acceptable--version 1, closed for further comment

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

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What variation of MEGA is acceptable to you?

  1. I don't care/I have no opinion.

    0 vote(s)
    0.0%
  2. MEGA is fine as is.

    1 vote(s)
    3.6%
  3. MEGA should not preceed in any form.

    2 vote(s)
    7.1%
  4. White and Crawley out AND definite ME selection criteria AND many severe samples.

    8 vote(s)
    28.6%
  5. Definite ME selection criteria AND many severe samples.

    1 vote(s)
    3.6%
  6. Definite ME selection criteria only.

    1 vote(s)
    3.6%
  7. Many severe samples only.

    0 vote(s)
    0.0%
  8. White and Crawley out only.

    0 vote(s)
    0.0%
  9. White and Crawley out AND definite ME selection criteria.

    2 vote(s)
    7.1%
  10. White and Crawley out AND many severe samples.

    0 vote(s)
    0.0%
  11. My preferred option isn't shown.

    2 vote(s)
    7.1%
  12. White/Crawley out, ME selection criteria, many severe samples, patient representation.

    7 vote(s)
    25.0%
  13. White/Crawley out AND patient representation.

    2 vote(s)
    7.1%
  14. White/Crawley out, ME selection criteria, patient representation.

    1 vote(s)
    3.6%
  15. White/Crawley out, many severe samples, patient representation.

    1 vote(s)
    3.6%
  16. ME selection criteria, many severe samples, patient representation.

    0 vote(s)
    0.0%
  17. ME selection critera, patient representation.

    0 vote(s)
    0.0%
  18. Many severe samples, patient representation.

    0 vote(s)
    0.0%
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  1. AndyPR

    AndyPR Senior Member

    ETA: This poll seems to be not fit for purpose, so I have requested deletion of this thread and a new poll has been created by @Valentijn here http://forums.phoenixrising.me/index.php?threads/the-new-mega-poll.47549/ - so please go there to vote.

    @charles shepherd believes that it would be helpful to have a poll so that the overall sentiment toward MEGA can be ascertained, so please indicate, by voting in the poll, your preference on MEGA.

    I have tried to capture what I believe the different popular permutations might be and also tried to make it as self-explanatory as possible - only one vote is possible and voting is anonymous (the option to display votes publicly is NOT active, so it will only show numbers). If something isn't clear, comment and I'll clarify what I meant. :)
     
    Last edited: Oct 24, 2016
  2. Valentijn

    Valentijn Senior Member

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    I'd also add that the anonymized raw data needs to be openly shared. Though I suspect that won't be a problem if Crawley and White are gone.
     
  3. A.B.

    A.B. Senior Member

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    Removing White and Crawley needs to include getting competent ME/CFS experts in their place.

    There is no option to address concerns about how realistic the study is in terms of depth of testing, sample size and costs. It looks completely unrealistic to me!

    There is no option for genuine patient involvement at all levels.
     
    FredaF, Hutan, Cheshire and 2 others like this.
  4. Cheshire

    Cheshire Senior Member

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    I think there's a bit of an ambiguity about "definite ME selection". From what I get, some want strict ICC criteria and some agree with a broader selection if PEM is mandatory.
     
    FredaF, Hutan and AndyPR like this.
  5. AndyPR

    AndyPR Senior Member

    Damn, you're right, forgot that one. If more people flag it as a definite option they want I'll add it in, but I think you are right that the concern about it diminishes dramatically with Crawley and White gone.
     
    mango, Hutan and Valentijn like this.
  6. OverTheHills

    OverTheHills

    Messages:
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    New Zealand
    Thanks for setting up the poll.

    To be honest I feel better patient representation is second only to getting White and Crawley out; with better patient input nonsense like poor patient selection/not including severe patients would never have got through.

    If you're not happy to amend/ add that I'll vote for the nearest option.
    Edit: I see @A.B. got there ahead of me about patient representation. I have cream cheese instead of brain at the moment and that makes typing posts rather slow!
     
    Last edited: Oct 24, 2016
    Hutan and AndyPR like this.
  7. AndyPR

    AndyPR Senior Member

    I tried to go for solely 'headline' issues to keep the number of options down. I would consider removal of White and Crawley would lead to replacements, so wouldn't need an option?

    Study being unrealistic would, hopefully, be addressed by patient representation? I'll add a representation option in shortly.
     
  8. AndyPR

    AndyPR Senior Member

    For the purposes of this poll, yes, I have been ambiguous there. This is just to get an idea of what areas are important to people, not to drill down to the fine detail of what exactly is important to everyone.
     
    FredaF and Cheshire like this.
  9. A.B.

    A.B. Senior Member

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    The concern is that one needs to test for a sufficiently large number of variables in order to establish differences between subgroups, and with 12000 patients, this is going to cost a lot. So much that it seems unrealistic to me.
     
    FredaF and AndyPR like this.
  10. AndyPR

    AndyPR Senior Member

    New poll options. Have added patient representation to the options. You can change you vote if you want to, just hit the "Change your vote" button at the bottom of the poll.

    The number of options now is getting unwieldy in my opinion, I'm unlikely to add any more now.
     
    Hutan likes this.
  11. A.B.

    A.B. Senior Member

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    It should have been a multiple choice poll. The permutations are too numerous.
     
    Valentijn likes this.
  12. eafw

    eafw Senior Member

    Messages:
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    UK
    My minimum requirements from that poll are patient selection and severes. That is what is needed for the study to be a study on ME, rather than "fatigue".

    I can tolerate Crawley being there as at this stage we will not, in reality be able to get rid of her. However I think she is on thin ice, and if the project goes ahead (and it is a long way from even starting yet, never mind the years of work) there is plenty of time to bring all the issues with MAGENTA etc into the light. If the rest of them at least have the basic samples from across the range of ME sufferers then they have the raw material with which to get results, That's the critical thing - the right raw material.

    Btw - we are putting this open letter to cmrc together still and are nearly ready with it. Draft written and will be up for final comments hopefully in 24hrs, and it does reflect the main problems raised here.

    ETA:
    @charles shepherd we will have a letter soon and the response to that (ie people signing up to it or not) will also give an indication of how people are feeling on the matter.
     
    Last edited: Oct 24, 2016
    trishrhymes likes this.
  13. AndyPR

    AndyPR Senior Member

    You want to do a better one, crack on, I'll delete this one. Let me know when you've finished yours.
     
    trishrhymes likes this.
  14. trishrhymes

    trishrhymes Senior Member

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    Good poll Andy, thanks for putting it together.

    I assume your 'White and Crawley out' is shorthand for 'no BPS supporter involvement in any capacity and no advice sought or taken from them'.

    There could be the danger that they could simply substitute others of the same ilk if we use specific names, or take them off the list but still use them as advisors.

    I don't think It matters that you've used the names, since this is just an internal PR poll to gauge opinion and I'm sure we all know what you mean.
     
    AndyPR likes this.
  15. charles shepherd

    charles shepherd Senior Member

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    Andy

    As 'ME selection criteria' is mentioned on several occasions in this poll I think it would be helpful if you could clarify what you mean here

    The current proposal regarding patient selection and assessment is referred to in the MEGA Q and A section below

    My understanding from this wording is that patients who meet the very broad NICE guideline diagnostic criteria for CFS will then be assessed to see which other diagnostic criteria for ME/CFS that they meet and we may therefore be able to identify objective biomarkers which can help to identify clinical and pathological phenotypes that come under this very messy ME/CFS umbrella

    And as there is a considerable degree of overlap between the various diagnostic criteria for both ME (London, Ramsay described etc) and ME/CFS (Canadian, IoM, ICC, Canadian. Fukuda etc) there will be plenty of people who meet more than one diagnostic criteria

    From the MEGA Q and A on patient selection:

    Patients with CFS/ME will be identified by clinicians in the NHS clinics. The clinicians will be asked to identify patients they judge from NICE criteria to have CFS/ME. This means patients with other causes of fatigue will not be recruited including (for example): those with thyroid disease, diabetes or depression that is sufficiently severe to explain their fatigue. Patients will have been examined, a full history taken and they will have had screening blood tests (to ensure other causes of fatigue have been excluded).

    We will collect sufficient information on each patient to be able to say whether they have CFS/ME using other research diagnoses (for example, the CDC [Fukuda 1994] diagnostic criteria, the IACFS criteria, Canadian criteria and so on). This is in addition to the diagnoses of CFS/ME that patients will get following NICE guidance. We will listen to our patient advisory group in terms of how much data we can collect on different diagnostic criteria. Our patients advisory groups may recommend collecting less data as patients are so ill.

    MEGA Q and A section >>

    https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18056402
     
  16. AndyPR

    AndyPR Senior Member

    Thread deletion request put in, I don't have the energy and can't be bothered to deal with the nitpicking.
     
    slysaint, Valentijn and trishrhymes like this.
  17. trishrhymes

    trishrhymes Senior Member

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    A pity, Andy, but I do understand. It's all getting very exhausting.

    Can I suggest you leave the thread and ignore the nitpicking? There's no obligation on you to try to please everyone, and your work in putting together the poll is greatly appreciated.
     
    Hutan likes this.
  18. Valentijn

    Valentijn Senior Member

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    I'll start a new one now with multiple options. I think I've got all the suggestions from this thread incorporated.
     
    Artstu likes this.
  19. Valentijn

    Valentijn Senior Member

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  20. FredaF

    FredaF

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    When you say diagnostic criteria its not clear what you mean. I voted as is if you mean the CCC with mandatory PEM ie as per the NIH. Patients do not need to be measured against the 22 criteria just the CCC and or ICC.
    Another problem is the lack of ME/CFS symptoms listed in the protocol - orthostatic intolerance elevated heart rate after exertion is easily observed (page 15 ICC) it is an easily quantifiable and objective measure of PEM.
    Patient input in the UK is meaningless as they just Action for ME and Action for ME go along with Peter White et a,..
    What is needed is research into people with ME/CFS - not 12,000 samples of blood and urine and no plans.
    Great results are coming from targeted research on strict criteria.
    The $$$$ would be better spent by supporting Invest in ME projects ie ones that have a real chance of finding something.
    Drop the stress, anxiety, depression studies - this is inappropriate in a study on ME/CFDS we have next to no funding for the disease we have and studies on ME/CFS shouldnt be diluted by studying mental health issue.
     
    Izola likes this.
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