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MEAction: Our Community will Not Suffer Stigma and Distortion

Discussion in 'General Advocacy Discussions' started by Andy, Mar 23, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    https://www.meaction.net/2019/03/23/our-community-will-not-suffer-stigma-and-distortion/
     
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  2. Trish

    Trish Moderator Staff Member

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    Excellent article, thank you #MEAction. This is the sort of response I had hoped for from all the ME charities.
    @EspeMor, @JaimeS or whoever wrote it, thank you.
     
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  3. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Absolutely agree. Great letter and great statement. Thank you #MEAction.
     
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  4. obeat

    obeat Senior Member (Voting Rights)

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    Thanks to everyone involved @EspeMor
     
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  5. Annamaria

    Annamaria Senior Member (Voting Rights)

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    I query the statement in the letter re The Lancet's retraction of the Wakefield et al paper. As I understand it, Wakefield did not state there was a connection between the MMR vaccination and autism but merely recommended further investigation.
     
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  6. Barry

    Barry Senior Member (Voting Rights)

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    Really excellent letter MEAction. Also, I will be interested to know more about @Annamaria's query, from an educational perspective.
     
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  7. Samuel

    Samuel Senior Member (Voting Rights)

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    thank you, #meaction!

    can we get [1] a right of reply, similar to or identical to this letter, [2] and/or a separate article with the same status as the original article, at reuters and the major media that printed it?

    also, has anybody looked at, for example, whether uk hate speech laws apply to some of these attack pieces in recent years?
     
    Last edited: Mar 24, 2019
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  8. TiredSam

    TiredSam Moderator Staff Member

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    Super.
     
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  9. strategist

    strategist Senior Member (Voting Rights)

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    If you want to express that ME is not psychological condition, this is how you should do it.
     
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  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Just a small point. The message means to refer to the UK ME Biobank, not the UK Biobank. The UK Biobank has been involved in one so far unpublished study on ME of some interest and may well be involved in further research but it is not the ME Biobank that has been working on ME for five years. The UK ME Biobank is not gathering data of thousands, just a few hundred.

    It is quite important not to confuse the two because getting an effective strategy through MRC will require involving both and it is crucial that peer reviewers do not confuse them.
     
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  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I like the letter but it may come a little close to confirming Sharpe's claim that the campaign against PACE is driven by wanting biomedical research rather than psychological research. If Reuter's were to ask Sharpe for a response he could say 'look, they admit that what they like is only biomedical research'.

    To be honest I do not think Wessely, Chalder and Sharpe will be unsettled by the other research going on. It does not threaten them in any way. They are more likely to be unsettled by people pointing out that PACE is unusable. The argument against PACE is the argument against poor science, not a comparison with anything else, of whatever quality.
     
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  12. strategist

    strategist Senior Member (Voting Rights)

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    The campaign isn't driven by this, but what is the problem with wanting biomedical research rather than psychological research? Patients want research to go in the direction they think is best and it's this one and there is nothing wrong with that.

    The latest Chalder paper just demonstrates how low psychological research has sunk and it helps no one but a few people to pretend otherwise.

    We can't allow Sharpe to dictate what behaviour is acceptable. We're going to decide that for ourselves.
     
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  13. lansbergen

    lansbergen Senior Member (Voting Rights)

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    I agree
     
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  14. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Remember that anyone can volunteer to join #MEAction and help to produce articles like this, as several S4ME members have. I don’t do nearly as much as many others, but I like the fact that I can chip in as and when I feel able to, without any pressure or expectation.

    Of course, there are other charities and organisations which members may consider joining too.
     
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I am simply putting myself in the position of a Reuter's administrator. Sharpe says the campaign is based on a preference for biomedical rather than psychological research. The administrator looks at the letter and sees that the critique of the psychological research is set off against claims of better biomedical research. Looks as if maybe Sharpe has a point.

    The point for me is that the letter would probably be much stronger if it simply focused on the poverty of the BPS research - which is what the letter to the Lancet did, as far as I remember. Bringing in a contrast with biomedical allows Sharpe to claim he has evidence of how the campaigners think.

    There in nothing wrong with wanting biomedical research but that is not a scientific argument in itself for suggesting that there should be more emphasis on such research. The arguments for that are more subtle.

    I agree with the point about Chalder's research but that is the right argument, nothing to do with the biomedical issue.

    My point isn't about Sharpe dictating what is acceptable. It is about allowing Sharpe to leave the Reuter's administrator saying ' Yeah, well it looks as if Sharpe has a point. He's an Oxford professor so he is probably right. Let's whitewash.'
     
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  16. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    I understand the important point you’re making, but I think you’re being over cautious. The article doesn’t say that #MEAction is opposed to any other types of research, it just states the need for biomedical research. In fact, the article makes no comment on psychological research per se, so I think it would be wrong for Reuters or anyone else to infer from the article any objection to anything other than the type of low quality research which has led to “the false and damaging view that ME can be reversed by forcing patients to exercise or to think differently.”
     
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  17. Annamaria

    Annamaria Senior Member (Voting Rights)

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    https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(97)11096-0/fulltext

    https://www.autism-watch.org/news/lancet.shtml
    "The Lancet has retracted publication of a 1998 paper [1] whose authors—led by Dr. Andrew Wakefield—suggested that the measles-mumps-rubella (MMR) vaccine might be linked to autism. The paper didn't declare that cause-and-effect had been demonstrated [emphasis added], but at the press conference announcing its publication, Wakefield attacked the triple vaccine; and he has continued to do so ever since.

    Lancet's "official" retraction states:

    Following the judgment of the UK General Medical Council's Fitness to Practise Panel on Jan 28, 2010, it has become clear that several elements of the 1998 paper by Wakefield et al are incorrect, contrary to the findings of an earlier investigation. In particular, the claims in the original paper that children were "consecutively referred" and that investigations were "approved" by the local ethics committee have been proven to be false. Therefore we fully retract this paper from the published record [4].

    The paper remains publicly visible, but the online version displays the word "RETRACTED" in bright red letters on every page of the PDF version."
     
    Last edited by a moderator: Mar 25, 2019
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  18. EspeMor

    EspeMor Established Member (Voting Rights)

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    If you liked our article, please send big thanks to
    Adriane Tillman and @JaimeS l!!
     
    Last edited: Mar 25, 2019
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  19. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Thank you!
     

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