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The New MEGA poll

How should the MEGA study change to get your support?

  • What's MEGA?

    Votes: 8 7.8%

  • I'll never support MEGA in any form

    Votes: 1 1.0%

  • Exclude Peter White (lead PACE author)

    Votes: 81 78.6%

  • Exclude Esther Crawley (psychosocial ME/CFS pediatrician)

    Votes: 84 81.6%

  • Exclude all "biopsychosocial" (BPS) researchers

    Votes: 78 75.7%

  • Exclude Action for ME (AfME) from involvement

    Votes: 48 46.6%

  • Exclude Association for Young people with ME (AYME) from involvement

    Votes: 59 57.3%

  • Exclude the ME Association (MEA) from involvement

    Votes: 3 2.9%

  • Require some direct (not charity) patient involvement

    Votes: 35 34.0%

  • Require direct (not charity) patient involvement in all stages

    Votes: 56 54.4%

  • Require direct (not charity) patient approval of study design and changes

    Votes: 40 38.8%

  • Require fully open sharing of anonymized data

    Votes: 84 81.6%

  • Ensure a representative sample of severe patients

    Votes: 79 76.7%

  • Require PEM for diagnosis

    Votes: 74 71.8%

  • Require Canadian Consensus Criteria (CCC) for diagnosis

    Votes: 48 46.6%

  • Require International Consensus Criteria (ICC) for diagnosis

    Votes: 31 30.1%

  • Require IOM's SEID criteria for diagnosis

    Votes: 15 14.6%

  • Other (please describe in the thread below)

    Votes: 9 8.7%

  • MEGA is perfect as it is

    Votes: 0 0.0%

  • I'll support MEGA even if no changes are made

    Votes: 4 3.9%
  • Total voters
    103
F

FredaF

Messages
30
It is very easy for MEGA to address our concerns.
1. Get rid of 2 particular people - who make outlandish and misleading claims.
2. Use CCC as an entry criteria and stratify for PEM, ICC, IOM as well.

A bonus would be to:
3. Build on the already existing bio-bank of 500 samples.
4. Build on the work by Invest in ME.

The fact that MEGA can't even address 1 and 2 makes for another poor study.....unfortuatley Action for ME and the Association of Young people with ME will back anything by the people making outlandish and misleading claims.
 
V

Valentijn

Senior Member
Messages
15,786
In case anyone is curious (I was!), it looks as though there's been 101 votes on this poll thus far :thumbsup:
 
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