Eleven Days of Christmas

Well, in my previous post (a few hours ago), I did say to take a closer look at the MEGA site in case there was something I’d missed – and too right I was. I had failed to read the new MEGA blog post, thinking that it was just about the change of deadline for applications to join the patient advisory group. I hadn’t realised that it also provides a schedule for subsequent weeks. Here it is:

  • 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.

So patients are to be given a maximum of eleven days to read the ‘papers and key information’ before discussing it and -presumably – suggesting possible alterations in a teleconference or e-group meeting over the Christmas period! So not only are they expected to do this over Christmas, but the twelve days of Christmas has been shortened to a maximum of eleven. Notice the w/c in there – not meaning ‘toilet’ in this instance (although some might think this an appropriate place to sling the schedule) but ‘week-commencing’, so the papers could theoretically arrive any time that week, which might be as little as six days before the conference.

At least they accept the possible need for a backup call ‘to address outstanding issues’ and also feel that some explanation is due. They say:

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.

and:

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

Even so, to use an old joke from Have I Got News For You, the words piss-up and brewery spring to mind. And of course many will say that they’ve carefully planned it like this to deliberately discourage and marginalise patient involvement. I can fully understand that point of view. If MEGA really want to win back the trust of the patient community, they are not going the right way about it.

Does this make an difference to my decision to apply for the patient advisory group? I’m still processing that one. But I’m getting more and more annoyed. Three more words have sprung to mind: ‘taking the’ and ‘piss’. And it’s not us that’s doing it…

(My normal pristine standard of vocabulary will be resumed in the next post.)

See also this OMEGA post which I should have read yesterday, including pertinent comments by Peter T.

7 thoughts on “Eleven Days of Christmas”

  1. They’ve done it to keep the token patients away from the ‘scientists’, just as they did at the CMRC inaugural meeting. I’ve not followed how they organise themselves since: but where did that original CMRC patient group go? Why haven’t they been involved all along?

    We need to find out who is this mysterious nameless funding body and talk to them: that’s where the patient advisers need to be: behind the money. That’s how you get things done. The funding body should say that they are happy to fund a large databank, but not one managed by people whose scientific credibility and commitment to open data sharing is in doubt. If the sensible members of CMRC have not got the bottle to insist on a change of constitution and a break with discredited individuals and PR lobbyists, then they should have the decision made for them by the patients whom the whole exercise is supposed to be for.

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  2. I don’t think the funder is too mysterious. They seem to have in mind the Wellcome Trust, whose Wellcome Colllection houses the Science Media Centre and which hosted a discussion by Simon Wessely and others last year about ‘exhaustion through the ages’. The Wellcome book prize this year was won by Suzanne O’Sullivan for her book ‘All in the Head’ etc etc.. Regrettably, I can’t see us getting far with them. They’re all in the same club.

    You interested in joining the patient advisory group, Steve?

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  3. Thinking about disability discrimination…….if you were deaf you would need a sign interpreter. If you were visually impaired you would need the docs in braille or electronic format to listen to.
    As a person with a fatiguing illness i would think you should be able to have the help of a PA or second volunteer to help with the reading and perhaps summarizing.
    That they expect a patient to function in the same way as a healthy person seems illogical and discriminatory
    So why not ask them how they will accommodate pwme. If they make no adjustments then are they not breaking the law?
    Just some thoughts. 🙂

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    1. Good point. It seems to me that with the Christmas schedule, they’re actually asking ME patients to function in a way which would be difficult even for healthy people. Questions about this could be addressed in the MEGA Contact Us box certainly. I also wonder whether there are minimum standards for patient & public involvement set down somewhere. Hmm. Did I mention this in a previous comment? There’s a lot that could be looked into, but personally I’m shattered and need a break – especially if I’m going to be reading info on MEGA all Christmas, which may be the case depending.So yes, volunteers are warmly invited to address these issues with MEGA (who have probably worked out we don’t have the energy left for it)…

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  4. I’ll be very glad if informed advocates like you are selected for the PAG. However, that schedule would be a big ask for any unpaid volunteers, let alone patients and carers. I hope the sacrifice those volunteers will be making is both appreciated and worthwhile.

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    1. Thanks, Samantha. It certainly won’t be a bundle of laughs. I seriously doubt that the level of effort required will be either appreciated *or* worthwhile (the latter because we won’t necessarily have the power to change anything) but this MEGA business has niggled me into writing post after post ever since I’ve heard about it (which I rather wish I hadn’t). So it seems wrong to pass up on the chance to apply for a position in which I might conceivably have the power to change the study for the better.

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      1. Hate to think that people will be risking their health to participate in this. The timing of this consultation doesn’t seem to allow for any significant changes to be made to MEGA before the deadline (and the reluctant and minimal engagement so far doesn’t exactly inspire confidence either). No patient should feel under pressure to push themselves for so unclear a purpose, and I can’t help feeling the MEGA organisers should not have put people in this position, deadline or no deadline. But very good luck if you decide to go for it.

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