The MEGA state of affairs so far might be funny if it didn’t have such serious implications; particularly for children and young people, and future generations of people afflicted by a serious and life-threatening disease through no fault of their own; as the MEGA study would run for years to come and cost several millions of pounds.  The question why MEGA had not set up a website was posed on a thread on Phoenix Rising forum about the Opposing MEGA petition.   A contributor to the discussion kindly referred to our Opposing MEGA site as an example of how easily and quickly it may be done.  The M.E./CFS Epidemiology and Genomics Alliance (MEGA) closed their petition to ‘mainstream research funders’ after 35 days on the evening of 2nd November 2016 stating –

Please note: We will be moving to a MEGA website in the next week or two so that we can better manage content and improve access to information for those that don’t wish to sign up to support this study but are keen to hear the latest news. We plan to continue posting regular updates and blogs and to ensure there is the facility to ask questions and engage with the MEGA team. We will also be posting information about how you can become part of the patient advisory group soon. Working with the researchers, this group will inform the application and protocol for the study.
https://www.change.org/p/support-this-huge-biomedical-m-e-cfs-study-and-its-application-to-major-uk-research-funders

The M.E./CFS Epidemiology and Genomics Alliance launched their MEGA website four weeks later on 30th November, with a triple whammy:  poor quality information; no facility to comment on the blogs; and a six day deadline to submit applications to join the Patient Advisory Group of 12 to 15 adults.

The short deadline would fail requirements to make reasonable accommodations for any disability group, let alone a disabling neurological disorder, marked by inability to produce energy on demand.

It should be inconceivable that a management group comprising experienced patient representative charities would think it acceptable to provide such a small window in which to apply for membership of a Patient Advisory Group.  Action for ME is administering the applications, ME Association and ME Research UK are on the panel considering the applications, along with Paul Little, a Professor of Primary Care, representing the MEGA team.

We will comment on other content of the new MEGA website in another post.  Meanwhile, as MEGA announced an extended deadline in response to the points raised, we leave it to you to decide the reasonableness in the scope of what’s required of the Patient Advisory Group within what remains a very short time-frame, at the most demanding time of the year for most patients and families.   MEGA announced on 1st December –

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.

Our counter-petition Opposing MEGA has done its job of showing that a majority of people reject the petition by MEGA to mainstream research funders but presently remains open to sign and comment at https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

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