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Action for ME (afme) and the CMRC still slandering patients in their charter, conference Apr 26 2016

Discussion in 'General ME/CFS News' started by eafw, Apr 13, 2016.

  1. eafw

    eafw Senior Member

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    The CMRC annual conference is being held (at the Science Media Centre Briefing Room) on April 26th this year. They are proposing some minor revisions to their charter but retain this very nasty clause:

    "3.1.3. All members must not take part in the harassment of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research. This does not prevent engagement in appropriate scientific debate."

    and this little oddity

    "3.4.3 Observers: The UK funding agencies and the Science Media Centre may be invited to be observers at all meetings. Observers may be asked to leave the meeting on the motion of a majority of those members present"

    The funding agencies is understandable, but the SMC ??

    This is from a collaboration that includes Afme, MEassoc, Ayme, Meresearch UK, the MRC and various researchers.

    It's about time these people put something out saying that they stand against the abuse and harrassment of patients, rather than continuing with the SMC driven propoganda about us.

    ETA: they are intending to livestream the AGM, details should follow.
     
  2. Esther12

    Esther12 Senior Member

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    I don't see why researchers should have protection from 'orchestrated campaigns', when patients don't. Particularly if the SMC are involved, and they've played such a role in smearing patients.

    How do they know that? Are these terms clearly defined somewhere?
     
  3. Chrisb

    Chrisb Senior Member

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    That was my initial thought, too. There really ought to be a schedule with all definitions.

    This clause has the appearance of being a first draft sent out for approval and which one would expect to be returned covered in amendments in red ink. It appears to be only the words "members", "take part in", "harassment", "orchestrated", "campaign, "conducting" and "appropriate" that are in urgent need of clarification, but one could no doubt find equal obscurity in "peer reviewed research" and "scientific debate" were one minded to be particularly contumacious.

    Perhaps the SMC are not as Machiavellian as we imagine. If this clause fails in its original purpose of cowing people into a state of submission, how is it to be implemented? It would be at a time of heightened awareness of the problems that either a membership organisation would be "forced" into a principled resignation, or sanctions (imposed by whom, and how?) would have to be enforced. Either way the SMC has lost control of the news agenda.
     
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  4. worldbackwards

    worldbackwards A unique snowflake

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    Well, quite. Is not the MEA and AfME's support of the PACE trial data being released part of an 'orchestrated campaign'? And have they been thrown out on their arse? All that's needed here is to call their bluff once in a while because this really is just scare tactics.
     
  5. worldbackwards

    worldbackwards A unique snowflake

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    Oh, well done!
     
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  6. Bob

    Bob

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    So, criticism of research is OK, as long as it's not part of an "orchestrated campaign". Threatening researchers with violence obviously isn't OK. But it leaves a wide undefined grey area e.g. official complaints, FOI, criticism of professional conduct.
     
    Last edited: Apr 14, 2016
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  7. Scarecrow

    Scarecrow Revolting Peasant

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    Yes, the amendment has led to ambiguity and not the intended clarification.
     
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  8. Bob

    Bob

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    As per Esther's comments above, I propose a new clause to ensure equality for patients...

    3.?.?. All members must not take part in the harassment, denigration, or vilification of patients including taking part in orchestrated campaigns. This does not prevent engagement in appropriate scientific debate.
     
  9. Dolphin

    Dolphin Senior Member

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  10. BurnA

    BurnA Senior Member

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    Great idea.

    How can we get this proposed formally ?

    @charles shepherd I know you have been critical of the SMC in the past. Do you know why they may be invited to be observers at all meetings?
     
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  11. sarah darwins

    sarah darwins I told you I was ill

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    Can someone briefly explain the relationship between AfME and CRMC?
     
  12. Scarecrow

    Scarecrow Revolting Peasant

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    They are just one of the charities that holds a position on the board and they provide secretarial services.
     
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  13. sarah darwins

    sarah darwins I told you I was ill

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    Thank you. I'm suffering abbreviation fatigue.
     
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