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Today's APPG on ME meeting is cancelled

Discussion in 'Upcoming ME/CFS Events' started by Dx Revision Watch, Jan 17, 2017.

  1. Esther12

    Esther12 Senior Member

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    Seems a bit dodgy that Action for ME were telling charity partners that the meeting had been cancelled when it hgad not.
     
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  2. Esther12

    Esther12 Senior Member

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    Seems that the Whitehouse Consultancy do media management for Maximus on their DWP work:

    https://www.maximusuk.co.uk/remploy-secures-long-term-future-maximus-joint-venture

     
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  3. Cinders66

    Cinders66 Senior Member

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    Thanks, it is good Jacob seems to have felt brexit needed him more. Peter bottomley , very right wing isn't he, his wife was health secretary under Thatchers starvation of NHS - is he going to be a radical social care spender on behalf of pwME?
     
  4. slysaint

    slysaint Senior Member

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    o_O they need a meeting of Parliamentarians to work this out?
    1) try telling the NHS/GPs that M.E. is a serious debilitating biological/physical illness
    2)what is the point in giving them 'access to the real information' if they ignore it, or if the information they are given is wrong?
    3)stop treating pwME with CBT/GET for starters...........

    why didn't they want the charities reps there?
     
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  5. Luther Blissett

    Luther Blissett Senior Member

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    To be fair to him, he is probably the most left wing in his party, mostly an old fashioned Conservative. He isn't going to be for greater spending, but he is probably more concerned with ethical questions about studies, treatments, etc.
     
  6. Binkie4

    Binkie4 Senior Member

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    Could somebody @Dx Revision Watch please check the dates on all these posts? I think that 'yesterday' has been substituted for 'today' in those I checked.

    Obviously necessary for accuracy now, but also for the future as these are a record of what is happening.

    There are obviously concerns about the cancellation of today's meeting, I am concerned because I had to cancel my MP, but there seem to be other fears which in the light of ME history ,are quite reasonable.
     
  7. Binkie4

    Binkie4 Senior Member

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    I started writing the above on Tues 27th Jan but I suspect it crossed over midnight so might be dated 28th Jan.
    Hell's teeth, in view of the content, it won't make sense.

    Why is life so, so complicated?
     
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  8. charles shepherd

    charles shepherd Senior Member

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    I didn't get back to Glos from meetings in London till very late last night and did not see the clarification from AfME before I left

    Anyway, I have just been speaking to the Countess of Mar for an update

    The APPG meeting was actually cancelled as a result of the Theresa May statement

    CS
     
  9. charles shepherd

    charles shepherd Senior Member

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    Further clarification just received from Katie McMahon at AfME - who is dealing with meetings admin for the APPG on ME:

    Dear all,


    Iā€™m getting in touch to let you know that the APPG meeting, which was scheduled to take place yesterday, was postponed at short notice. This was done so at the request of Daniel Zeichner MP, Chair of the inquiry, due to the announcement of a statement on Brexit in the Commons taking place at the same time as the meeting. Daniel was required to attend this statement, and expected that a number of the other MPs would have to do likewise.


    The meeting will be rearranged in due course, I will keep you informed as this progresses.


    Kind regards

    Katie


    Katie McMahon

    Policy Officer
     
  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    I don't know why, for this specific meeting, the charity reps were not attending - you would have to ask Dr Shepherd or AfME.
     
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  11. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    So...

    The meeting had been scheduled for Tuesday, 17 January 2017.

    On Monday 16 January, AfME's Policy Officer, Katie McMahon, sent out a cancellation notice saying that the meeting scheduled for Tuesday 17 had been cancelled.

    From the copy of this notice that Dr Shepherd forwarded to me, it looks as though this alert may have been sent out to all those on the invite list (but I cannot confirm as I don't have the headers and it may have been sent out only to the charity reps).

    Whereas what Katie should have sent out was an alert that the charity reps were not required to attend this meeting as it was being held as a Parliamentarians only meeting for APPG on ME members and MPs, as per the planning for this particular meeting (which may sit outside the normal schedule for APPG on ME meetings, but I don't know).

    But Katie says that invites had inadvertently been sent out to the charity partners of the APPG on ME although they were not required to attend this particular meeting.

    "Therefore the recent cancellation notice was for the charity partners. All charity partners were informed earlier of this amendment to the meeting having had direct contact from Clare Ogden, our Head of Comms and Policy at Action for M.E."


    So the meeting was intended for APPG on ME members and Parliamentarians only, and had not at that point been cancelled.

    I cannot confirm whether the cancellation notice was sent only to the charity reps or inadvertently to all on the invite list - unclear from what Katie writes.

    Then the meeting was cancelled anyway, at short notice, due to the PM's Brexit statement.

    I hope I have that straight as I am beginning to lose the will to live...
     
    Last edited: Jan 18, 2017
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  12. Binkie4

    Binkie4 Senior Member

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    @Dx Revision Watch -thank you for your deciphering of yesterday's events. I truly don't know how you managed that.
    Also for keeping us updated as events unfolded.

    I lost the plot about midnight last night. Can I apologise for that?. Am assuming you didn't see my odd post till this morning...... hope you didn't; you really might have found it just too confusing.
     
  13. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    No worries, Binkie4.

    I didn't see your post until this morning but there is a post with dates mentioning 27th and 28th January...so I had to have a quick glance bottom right of my screen to reassure myself I haven't been in a dissociative fugue state for the last 10 days.
     
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