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European ME Alliance conference in Sweden 19 & 22 Oct – Hornig, Peterson, Jason

Discussion in 'General ME/CFS News' started by Sasha, Oct 19, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Valentijn, Snowdrop, Bob and 6 others like this.
  2. mango

    mango Senior Member

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    have you seen the films/slideshows that RME made for this conference? very very moving...
    english version:
    swedish version:

    they made a printed version of this too, a folder, that will be handed out at the conference and elsewhere.
    (i was part of this project, i'm one of the people in the slideshow...)

    there was a great article in a paper earlier this week:
    http://www.etc.se/inrikes/de-osynligt-sjuka

    and there's another one in one of the biggest papers today too
    http://www.dn.se/insidan/patienterna-behover-hjalp-nu/

    and there will be something on the radio later today as well, keeping my fingers crossed..! :)
    http://sverigesradio.se/sida/artikel.aspx?programid=1637&artikel=6282119

    here's more info about the conference in stockholm (in swedish):
    http://rme.nu/konferens-sth-2015

    ...and the conference in gothenburg (in swedish):
    http://rme.nu/konferens-gbg-2015

    all of this is in large part thanks to RME! they are doing a great job :)

    (i'm not able to translate everything, but if you have any questions about details, please feel free to ask! :) )

    ETA: link to more info about the upcoming radio interviews.
     
    Last edited: Oct 19, 2015
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  3. Effi

    Effi Senior Member

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    @mango thank you for sharing the slideshow. It is so moving... I encourage everyone who can to watch it, and share it with others. It gives a name and a face to all those who are 'invisible'.
     
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  4. Sasha

    Sasha Fine, thank you

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    Glad you have something good this week, @mango! :thumbsup:
     
    mango likes this.
  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Very powerful video.

    I was unaware of a potential connection with swine flu vaccination.

    Is that part of the seasonal flu vaccine?
     
  6. Effi

    Effi Senior Member

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    Last edited: Oct 19, 2015
  7. charles shepherd

    charles shepherd Senior Member

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    Vaccinations and ME/CFS - including swine flu vaccine:

    Anecdotal evidence indicates that a number of vaccinations are occasionally capable of either triggering ME/CFS, or causing an exacerbation of pre-existing symptoms, and the UK CMO Working Group report acknowledged (in section 3.3.2) that vaccinations can occasionally act as a trigger factor in the development of ME/CFS. The CMO report can be e-accessed using the document archive on the MEA website: www.meassociation.org.uk

    The link is biologically plausible but there hasn't been any really robust research carried out to investigate the role of vaccinations as immune system stressors in the causation of ME/CFS.

    Two fairly recent published reports of interest relate to an MHRA review of HPV vaccine (Cervarix) and ME/CFS >>

    http://www.mhra.gov.uk/NewsCentre/Pressreleases/CON316330

    and two case reports re Swine Flu vaccine and ME/CFS:

    http://www.meassociation.org.uk/201...accination-bmj-rapid-responses-21-march-2014/

    I have a longstanding interest in the role of vaccinations in ME/CFS and my patient evidence on the subject, which is now quite substantial and includes a number of health workers who were vaccinated almost as a condition of employment, indicates that hepatatis B vaccine appears to play an unusual and significant role here

    This is supported by the results of the MEA website poll on the roll of vaccinations as trigger factors for ME/CFS (see below)

    The MEA has an information leaflet which summaries the research evidence relating to vaccinations and ME/CFS.

    Similar information is summarised and referenced on page 41 of the MEA purple booklet.

    MEA WEBSITE POLL:



    • If your ME/CFS was triggered by a vaccination, which vaccine was involved?
      • Hepatitis B (57%, 338 Votes)

      • Flu (9%, 51 Votes)

      • Other (7%, 41 Votes)

      • BCG (6%, 33 Votes)

      • Cannot remember (5%, 31 Votes)

      • Combination (5%, 27 Votes)

      • Tetanus (3%, 18 Votes)

      • Meningitis (3%, 17 Votes)

      • MMR (2%, 14 Votes)

      • Polio (2%, 10 Votes)

      • Hepatitis A (1%, 7 Votes)

      • Typhoid (0%, 4 Votes)


        Total Voters: 591
    Start Date: April 30, 2010 @ 3:20 pm
    End Date: June 2, 2010 @ 3:20 pm
     
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  8. SOC

    SOC

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    And look! No screwball BPS, all-in-your-mind idiots included in this conference! Certain conference organizers need to learn something from this -- you CAN have a conference on ME without including a bunch of people who want to sell their personal psychological belief system as science. (Duh)
     
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  9. mango

    mango Senior Member

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    i totally agree, @SOC :)

    however, there were a couple of swedish BPS people invited to the roundtable meeting (including the person behind this study) that took place in connection with the conference.
     
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  10. SOC

    SOC

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    Ah well, at least they weren't there to speak or put across their garbage as good research. At least in a roundtable discussion alternate views to their nonsense can be presented right then and there. ;)
     
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