Applications to join Patient Advisory Group of MEGA project extended by one week | 2 December 2016

December 2, 2016

From the MEGA project website, 1 December. Words by Sonya Choudhury.

We have been contacted by a number of people asking if it’s possible to extend the deadline for applications to join the Patient Advisory Group. We want to ensure that those who wish to engage with this process are able to do so, and so have extended the deadline to 9am 13 December 2016.

The reason that the timescale is so short is because the mainstream funder to whom we want to apply for MEGA funding has an application deadline in early January 2017. This deadline was only recently announced and was different to the timings we expected.

Financial costs need to be established before submission and so, as the Patient Advisory Group will play a part in shaping the design of the study, recruitment needs to happen urgently. Researchers are keen to gather the views of the group to inform decisions about which phenotypes are important to measure.

There will then be a couple of months for the Patient Advisory Group and researchers to develop a more detailed design.

If we miss the deadline for this funder, we will not be able to apply again until 2018.

The timetable for recruiting the MEGA Patient Advisory Group and holding its initial meeting is now as follows:

* 9am 13 December 2016 – Deadline for applications to join the MEGA Patient Advisory Group
* 13-14 December – Applicants contacted and group members confirmed
* w/c 19 December – Papers and key information sent out to Patient Advisory Group members
* 29 or 30 December – Patient Advisory Group teleconference and/or e-group meeting held
* 4 January 2017 – Back-up call for Patient Advisory Group if needed, to address outstanding issues from December meeting.

3 thoughts on “Applications to join Patient Advisory Group of MEGA project extended by one week | 2 December 2016”

  1. Dx Revision Watch

    Does the MEA consider that the revised 13 December deadline allows sufficient time for patients, carers or other stakeholders to prepare applications for a seat on the Patient Advisory Group and for the selection panel (for which an MEA rep is a member) to review applications, assemble a Patient Advisory Group and advise successful candidates by 13-14 December?

    Does the MEA consider that the revised timetable allows sufficient time for a nascent Advisory Group to study and digest the key materials it will be sent a few days before Christmas and to prepare input in readiness for the initial meeting of the Group on 29 or 30 December?

    Does the MEA consider the holding of a teleconference or e-meeting between Christmas and New Year to be ill-timed, given that some members may be unavailable during this period or have increased family commitments or may be uncertain of their availability?

    Does the MEA consider that the revised timetable allows sufficient time for identification, discussion and resolution of outstanding issues of concern before a funding application is submitted to meet an early January 2017 deadline?

    Does the MEA consider that an application for funding should be postponed until at least 2018 to allow increased time for Patient Advisory Group recruitment and to allow more time for preparation, public consultation and the addressing of unresolved concerns about the project?

    If so, why has the rep for the MEA signed off on the revised schedule that was published on 1 December 2016?

  2. The major problem with MEGA exemplified by Dr Nahle

    Two Quotes from Dr Zaher Nahle

    “I have written many times previously, including in an editorial in March of this year, on the aftermath of the revitalization of the Trans-NIH ME/CFS Working Group—specifically on the perils caused by what I then called “ME/CFS deniers” and “psychosomatization sympathizers.”

    “We must never, under any circumstances, confuse cross-pollination of ideas with cross-contamination.”

  3. The schedule for applications is ‘INSANE’

    Patients are left stressed and exhausted from the MEGA petition debacle and Esthers FITNET blanket advertising in the media. Our peace of mind destroyed once again by an onslaught of propaganda from the BPS school before Christmas. And now we are presented with a shedule for applications that would be insane even for the fittest of the fit.

    This is so far from how science should be conducted! for the sake of decency the process shouldn’t go on. Why is there such a rush to push on with something half baked no matter how damaging it might be?

    I think that MEGA was a done deed before even being mentioned to patients, nothing we could do or say would have stopped it. How do we know that patients haven’t already been picked and that this application time is not just for show or that it has not been deliberately done this way to stop unwanted patients from contributing.

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