Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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History, influence & implications of the IiME conference

Discussion in 'General ME/CFS News' started by Silencio, May 31, 2017.

  1. Silencio

    Silencio Senior Member

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    Last edited by a moderator: Jun 1, 2017
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  2. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    I don't think so. They probably think it's all vexatious! But I don't know for sure.
     
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  3. dreampop

    dreampop Senior Member

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    Excuse my ignorance, but what exactly is the IiME conference?
     
  4. daisybell

    daisybell Senior Member

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    Invest in ME hold it every year in London. They have a colloquium for researchers first and then a conference which is open to all. Biomedical stuff only. They are a great charity. They've also been raising money for a rituximab trial.
     
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  5. AndyPR

    AndyPR Senior Member

    I believe that invitations have been sent previously to members of the CMRC but, unsurprisingly, they've never been taken up. @Jo Best may be able to confirm if my memory is accurate on that.

    Anyway, why would they want to attend an event that would pretty much destroy their "flat earth" world view?? ;)
     
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  6. Daisymay

    Daisymay Senior Member

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    Blimey...... they look REALLY vexatious!
     
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  7. Jo Best

    Jo Best Senior Member

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    Crawley is a member or follower of the 'Wessely school', driving the biopsychosocial movement, which suits the agenda of the UK Government, or so successive governments are led to believe by their advisors, who happen to be Wessely et. al. An example of this is that the UK Department of Work and Pensions (DWP) co-funded the PACE trial, the first ever 'medical research' funded by the DWP. UK Government is advised that psychobehavioural, talking and exercise therapies, are cheap for the UK National Health Service (NHS) to provide and get people off welfare benefits and back to work.

    'Invest in ME' formed as a small group of patients and parents of patients in 2005 aiming to change the way that ME (WHO ICD-10 G93.3) is perceived and treated and believed that biomedical research was the key to achieving this. They registered as a UK charity in 2006 and held the first Invest in ME Conference for biomedical research. 'Invest in ME' charity is now also registered as 'Invest in ME Research'. The conference grew each year and expanded to include the 'heads together' workshop for the researchers. The focus has always been international collaboration and located at Westminster, as the venue is walking distance from the Houses of Parliament.

    So successive UK governments have been well aware that an international conference on biomedical research into ME/CFS has been held each year since 2006, as have their advisors and founding members of the CMRC, which formed in 2013 and hey presto, started their own annual conference and masquerade as 'the' UK CFS/ME Research Collaborative. So much for collaboration! The whole things stinks of politics and self-interest. But they do say that imitation is the sincerest form of flattery and it also reminds of these two quotes.

    Gandhi.jpg


    benn.jpg
     
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  8. sarah darwins

    sarah darwins I told you I was ill

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    Excellent summary for the record, Jo. Nice job.

    Do you know if parliamentarians are invited to open sessions of the conference?
     
  9. Jo Best

    Jo Best Senior Member

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    Thank you Sarah, yes I believe so.
    Did you also see the Chief Medical Officer meeting that Invest in ME Resarch arranged in January.
    "The charity pointed out that the CMO’s remit includes influencing policy and that from experience it seems that ME is not on the CMO’s radar.
    The charity mentioned that the previous and current CMOs had never accepted the charity’s invitations to attend or speak at the international conferences that the charity had organised in the past 11 years.
    The invitation was always either too early or too late."

    http://www.investinme.org/IIME-Newslet-1701-01.shtml

    An Invest in ME Research supporter had also met with former Prime Minister David Cameron, and he arranged for the charity to meet with Dr Martin McShane, National Clinical Director for Long Term Conditions. Then a £5000 reception was hosted by the PM's wife at 10 Downing Street to celebrate the 'successes' of one of the CMRC charities.
     
  10. AndyPR

    AndyPR Senior Member

    I'm extremely appreciative of all the efforts by IiME but to assume that government knows that the conference is on is assuming a greater awareness than I would be willingly to attribute to the vast majority of the government/MPs of this country. Do IiME not send out invitations at all then to MPs/officials?

    ETA: Just spotted you mostly answered the question on another post. Seems to me, although it may well be, in the main, a pointless exercise, that more invitations need to be sent.
     
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  11. suseq

    suseq

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    So well said @Jo Best - if there was any integrity or credibility within the BPS model or the SMC, the work and achievements of Invest in ME, and all the brilliant scientists and researchers attending the conference would be recognised, publicised and fully funded. That they are not proves the lie of the BPS/SMC aims and the justified concerns that are raised.

    It's a glorious day in London and the hopes and possibilities that this incredible conference inspires increase each and every year.

    @Robert 1973 said it brilliantly on what this conference means so can only add, yet again, endless thanks to everyone involved for all you have done and continue to do to raise awareness and research. And special thanks to the Dafoe-Davis family for caring and sharing so much.
     
  12. sarah darwins

    sarah darwins I told you I was ill

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    That's sort of what I was thinking about, too. It feels like it's a really important time for this, with politicians recently in the US (New York state, was it?) and I think some in Canada, too, taking a real interest in scientific research on ME. Still feels like we're waiting for that political breakthrough here in the UK.

    Mind you, with the election looming I don't suppose any pol has time to think about ME — not when there are so many soundbites to be learned. But maybe a big drive, in which members here might be able to help, ahead of next year's event to stir up some political interest and attendance would be possible.
     
  13. AndyPR

    AndyPR Senior Member

    Yep, agree that this year the election would have been a big obstacle to getting any MP there, and definitely agree a drive leading up to next year's conference would be a very good idea.
     
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  14. Jo Best

    Jo Best Senior Member

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    Yep sorry, by "well aware" I didn't mean in the sense of 'ME awareness'. As I said, they've gone to the trouble of holding the annual conference in the heart of Westminster, but I can't comment on whether more invitations need to be sent as I'm not involved and they don't publish a list of invitees. A member of their Scientific Advisory Board, Dr. Ian Gibson, is a former MP and has been involved with the charity from the start in 2006, and withing the House of Lords, the Countess of Mar is also a colleague supportive of the charity's work, so I'm sure they're well advised on best practice.

    Remember also that there is an All Party Parliamentary Group on ME (and there was a Scottish Cross-Party Group on ME) and that constituents are well-placed to influence their own MPs, some of which will be government ministers, and the Prime Minister, so everyone can play a role in supporting these sterling efforts.
     
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  15. Jo Best

    Jo Best Senior Member

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    It's interesting that political activism is as much a feature of the Invest in ME Research Conference as the biomedical research, as the two are inextricably intertwined, and medical education initiatives come from the meetings too, and I think the New York state letter may have been linked with this by advocates Mary Dimmock and Terri Wilder.

    Even though the conference events may appear to be studiously ignored by UK government, they are having an impact, so it will only be a matter of time. This year, US NIH is represented at the London conference events for the 2nd year running (Vicky Whittemore) and CDC for the first time (Beth Unger).

    We also have to remember that UK is the home of the Wessely school and that they have patient organisations on board (now also via CMRC) supporting their own agenda, so its not a united patient/carer community.

    I agree too, good idea. The petition calling for Parliamentary debate had to close after about 6 weeks instead of the full 6 months because of the election, but it got 10k signatures so it will be up to the new government to decide whether to respond and it can relaunch afresh after the election, and the Women's Equality Party raised the wider problem of MUS in their Manifesto, which they invite the other parties to adopt.
     
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  16. Jo Best

    Jo Best Senior Member

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    Just adding that the rituximab trial (and related B-cell research) is part of the translational biomedical research programme of their UK Centre of Excellence for ME, which began by investigating the role of the gut microbiome in ME. The hub of the Invest in ME Research Centre of Excellence is Norwich Research Park, where the work will move into a new building in 2018 called the Quadram Institute (QI), which has launched a website with pages relevant to this work.
    A recording of the January 2017 public talks (inc. Dr. Fluge and colleagues from Norway) are on this page:
    https://quadram.ac.uk/mecfs-talks-held-in-norwich/
     
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  17. Jo Best

    Jo Best Senior Member

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    Thanks @suseq and here's an example today of the lack of integrity....
     
  18. NelliePledge

    NelliePledge plodder

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    Strictly speaking there are no MPs until the election just candidates. Although Ministers do still have an ongoing role. So unless some of the all party group are in safe seats or their constituencies are in London it would be unlikely they'd be able to break off campaigning. Just a shame the election was called at this time.
     
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  19. Jo Best

    Jo Best Senior Member

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    On the other hand, the election campaigning coinciding with May ME Awareness has given some people a good route to try to get prospective MPs on side. I've seen a few comments on social media to this effect. Of course, they could renege on any promises of support if they are elected, but there were also some positive responses from MPs to this call for Parliamentary debate before the election was announced: https://petition.parliament.uk/petitions/190618
     
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  20. Jo Best

    Jo Best Senior Member

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    Reposting from the original thread: http://forums.phoenixrising.me/inde...ka-aiyar-at-iime-omf.51836/page-4#post-857574

     
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