#MEAction Network UK's polling results for the proposed MEGA study

Last week, we asked for your thoughts on the proposed MEGA study. The poll ran for 5 days and 154 of you lent your voice to the concerns raised by many. Here are the results of the vote:

  • “The study must include severely and moderately affected patients.” 140 of 154 voted this. (90.9%)

mod-severe-patients

  • “Those researchers/advisors who promote ME as a behavioral, psychosomatic illness must be removed.” 132 of 154 voted this. (85.7%)

psychosomatic-researchers

  • “The data from the study must be made publicly available (open access) provided it is anonymised.” 131 of 154 voted this. (85.1%)

open-access-data

  • “The study must use a definition focused on post-exertional malaise (PEM) rather than generalised fatigue.” 116 of 154 voted this. (75.3%)

dx-criteria

  • “The study must commit to involve patients and independent patient groups in decision-making during the trial, and must make this process transparent.” 107 of 154 voted this. (69.5%)

involve-patients

  • “Patient engagement must be maintained before, during and after the study via quarterly blog posts and periodic online Q&As with patients.” 93 of 154 voted this. (60.4%)
  • “I am waiting to hear more about MEGA before making a decision (for example a full study design, clarity on the disease criteria, how patients will be represented).” 72 of 154 voted this. (46.8%)

hear-more

  • “The study must include patients from Wales / Northern Ireland / Scotland.” 62 of 154 voted this. (40.3%)
  • “Other.” 42 of 154 voted this*. (27.3%)
  • “No changes need be made; I support MEGA in its current form.” 2 of 154 voted this. (1.3%)

no-change

*Out of the 42 votes for “Other” 1 was pro MEGA, while the 41 remaining voiced concerns predominantly over the researchers involved, diagnostic criteria (generalised fatigue versus PEM-focused), the use of severe patients as well as whether this is an appropriate use of funding. All 42 comments have been passed on to the MEGA researchers for consideration and in the interest of patient involvement.

From these results, it is evident that the majority would like to see changes to the MEGA study before showing their support.

MEGA has been an area of great debate over the past few weeks within the community. Unrelentingly, we support the individual in the fight for health equality and patient empowerment, and will continue to provide that support regardless of stance of MEGA.

Therefore, below you will find the links both in support and in opposition to the study, and urge those who have not yet voted, to read both and consider the arguments carefully before making your decision.

To vote ‘no confidence’ in MEGA, click here: https://www.change.org/p/opposing-mega-a-vote-of-no-confide…

To support MEGA, click here: https://www.change.org/p/support-this-huge-biomedical-m-e-c…

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3 thoughts on “#MEAction Network UK's polling results for the proposed MEGA study”

  1. anthony bradstock

    Thank you for screwing over the UK ME community. I had hoped to live long enough to see a cure presented in the UK. Your promotion of MEGA has made that unlikely. This is a fillibuster to delay real research in the UK. Shame. You were doing so well.

    1. Hi Anthony. Can you please clarify your comment? This poll was not a promotion of MEGA. Rather, it was a survey of #MEAction Network UK participants, which clearly show that the vast majority oppose MEGA. This post actually supports your viewpoint.

  2. Am I missing something here? How can it be an ME study if it doesn’t use a definition focused on PEM?

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