UK Invest in ME (IiME) May conference

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Mar 21, 2009.

  1. mezombie

    mezombie Member

    The International ME/CFS
    Conference 2009 News

    Management, Treatments and the Latest
    Advances in Research into ME/CFS

    The international ME/CFS Conference on 29th May
    promises to be the best attended so far.

    With twenty places reserved for medical students as
    part of the Invest in ME Biomedical Research Fund
    and bookings up on this time last year early booking
    is advisable.

    The conference has shown the increasing interest in
    hearing the latest biomedical research and
    treatments for ME.

    Already thirteen countries are represented at the
    conference and the opportunities for networking
    amongst healthcare professionals and patient groups
    are unequalled.

    The conference will be showing new research such as
    that on cytokines from the Whittemore-Peterson
    Institute where Dr Judy Mikovits and her colleagues
    have developed a diagnostic blood test which
    measures cytokines and chemokines that can be
    used to confirm a diagnosis of ME.

    Other research is confirming the data from the IiME
    2008 conference - Sub Grouping and Treatments of
    ME - with research projects demonstrating the fact
    that sub-typing patients and treating them
    accordingly can greatly reduce symptoms and give
    people their lives back.

    In Norway there has been recent publicity of
    bedbound patients being investigated and
    subsequently treated by Professor Kenny De
    Meirleir. Professor De Meirleir's investigations are
    uncovering various reasons for these patients'
    illness and some patients are already reporting
    remarkable improvement in their condition.
    Professor De Meirleir will be presenting his
    research and results at the conference.

    The complications of long standing ME is poorly
    understood and rarely discussed or even researched.
    An epidemiological study of this nature is something
    which needs to be performed and, again, we look to
    the WPI for leadership here. We know that Annette
    Whittemore is asking the questions such as how
    many patients experience neurological problems such
    as seizures, or develop MS, heart disease,
    gastrointestional disease, osteoporosis, and/or

    Along with the WPI we feel that it is time to
    increase awareness of these patients' level of
    disability and suffering to challenge those who
    characterise ME as benign.

    Many thanks to those individuals and groups who are
    helping us spread word of the conference to
    healthcare professionals. The Sponsor a GP scheme
    is still available for healthcare staff and local ME
    groups to work together.

    Since the last newsletter we have added an
    a4-poster as well as our conference flyer - both
    available here:

    Conference News - Professor Basant Puri

    We are pleased to add Professor Basant Puri to our
    line-up for the conference. Professor Puri was a
    speaker at our first ever international conference and
    was on our intended list of speakers early on. We
    are glad that he is able to present for the first time
    details of his latest research at the conference.

    Our agenda for the International ME/CFS
    Conference on 29th May 2009 is now

    Presenter - Presentation
    Registration & Media interviews
    IiME - Welcome to the Conference
    Jonathan Brostoff
    MA DM DSc(Med)
    FRCP FRCPath FIBiol - Conference Chairman
    Mrs Annette
    Whittemore - Key Note Speech
    Garth Nicolson PhD - Similar Infections
    `````````````````````Found in ME/CFS and
    `````````````````````Neurodegenerative and
    `````````````````````Neurobehavioral Diseases
    Harald Nyland
    MD, PhD - Epidemics & ME:
    `````````````````Lessons from the
    `````````````````Giardia epidemic
    `````````````````in Norway



    Dr. Jonathan
    Kerr MD, PhD - Severely-affected
    ```````````````````Sub Groups of ME/CFS
    Dr. Barbara
    Baumgarten MD - Services for correct
    `````````````````diagnosis and Management/
    `````````````````Treatment of ME
    Discussion - The ME Clinic




    Professor Kenny
    de Meirleir MD, PhD - Case Studies of Diagnosis
    `````````````````````and Treatments for ME/CFS
    Dr. Dan Peterson MD - Treatment Regimes for the
    ``````````````````````Most Severe Cases




    Dr John Chia MD - Diagnosis and Treatment of
    ````````````````````chronic enterovirus infection
    ````````````````````associated with ME/CFS
    Dr. Judy Mikovits PhD - Research and Diagnosis
    ``````````````````````of difficult and complex
    ``````````````````````medical cases of ME
    Dr. Judy
    Mikovits PhD - Research and Diagnosis of
    ````````````````````difficult and complex medical
    ````````````````````cases of ME

    of ME Patients - Professor Basant Puri
    Professor Jonathan
    Brostoff + Presenters - Plenary Session



    Hillary Johnson Pre-conference
    Presentation Dinner - 28th May

    We would like to remind everyone of the
    pre-conference presentation on 28th May with Hillary
    Johnson, author of Osler's Web: Inside the Labyrinth
    of the Chronic Fatigue Syndrome Epidemic - see
    There are still some tickets available for this event.

    The evening will begin with Hillary discussing the
    role of the US Centre for Disease Control (CDC)
    and how its influence has affected the way
    ME/CFS has been perceived, not just in America
    but around the world.
    Hillary will also have copies Osler's Web with her and
    all of the conference presenters are invited - please
    see here for details:

    Dr Byron Hyde once said at one of our previous
    conferences that, if he were asked what he
    needed for resolving the problem of ME that he
    would include a lawyer and a historian. For those
    interested in the history behind the current
    situation with ME and why there is so much
    politicisation around ME and why lives continue to
    be lost to this illness today then this presentation
    is a unique opportunity to learn from somebody
    who has been through all of the politics since the
    Incline epidemic in the eighties.


    Conference DVDs

    As in previous years IiME cannot promise we will
    deliver a DVD of this conference. Our objective is to
    provide a platform for the most relevant research and
    experience of ME/CFS and we have to use our limited
    funds to ensure the conference goes ahead before
    we can commit to funding a DVD.

    We'll do our best. Meanwhile, we should mention
    that the presentations which were given at the 2008,
    2007 and 2006 conferences are still relevant and
    available in full on the DVDs (click here for details:



    We have invited the Secretary of State for Health
    and his sub-ministers, the head of the Medical
    Research Council and the Chief Medical Officer all
    to attend the IiME conference. All have declined.

    In June 2008 the IiME newsletter (see here:
    documented the lack of accountability exhibited by
    those officials entrusted with the healthcare of
    people with ME and their families.

    We are disappointed that these public servants have
    again declined to attend the premiere conference on
    ME in Europe. However, it is not because of these
    refusals alone by these individuals to have their
    respective organisations and departments
    represented at the conference which makes us
    disappointed. It is the continued indifference and
    lack of accountability being shown by the
    government, the CMO and the MRC to the plight of
    people with ME and their families.

    Whilst it is possible to have doctors, patients and
    carers travelling to the Invest in ME conference from
    all over Europe and as far afield as Australia, New
    Zealand and North America, it seems impossible to
    get the CMO, the Minister for Health or anyone from
    the MRC - despite some of them only having a 200
    metre walk to the conference venue in Westminster.

    We invite everyone to write to the respective
    departments and ministers to state their views as
    to why they should be at the conference, to listen
    to the latest biomedical research on ME.

    "I represent the Government, for which I
    work, the medical profession, which I try
    to listen to, and the public. My moral
    principle is that if ever there is a conflict it
    is the public who wins."

    - Sir Liam Donaldson Chief Medical

    from About the Chief Medical Officer



    Dave Loomes has made this even easier. Dave has
    set up a petition calling for these public servants to
    be present at the conference in May.

    The petition reads -

    We the undersigned petition the Prime to
    send the Minister Of Health, Medical
    Research Council delegates and the Chief
    Medical Officer to attend the INVEST in
    ME Conference 29th May 2009 London.

    The previous IiME conferences in 2008
    attended by presenters and delegates
    from 13 countries, from Europe, USA,
    Australia, New Zealand and South Korea
    demonstrated that "PROVEN

    See the petition here:

    The petition has already reached 1000 signatures so,
    if you are a UK citizen, please add your name to
    support us.

    Dave's idea has also generated another idea -


    Lost Voices -International
    ME Awareness Month 2009

    Our conference is intended to help focus more
    attention on the severely affected people with ME.

    What better way to raise awareness during ME
    Awareness Month than by highlighting the plight and
    saluting the resilience of these Lost Voices. To
    accompany the book we intend to use the title of the
    book to herald ME Awareness Month with an appeal
    to hear the people who are often neglected - from
    healthcare, from research trials and from society.

    Lost Voices - International ME Awareness
    Month 2009

    Dave Loome's petition has generated the idea of
    raising more petitions during ME Awareness Month
    regarding ME. The idea is sound.

    Many aren't able to attend events and signing a
    multitude of responsible petitions relating to ME will
    provide a way of changing views and demonstrate
    the need for action by those officials who do nothing.

    Another idea is to sponsor a Lost Voices book during
    ME Awareness Month and having it delivered to GPs,
    healthcare staff or educational or government staff,
    with a message - see here:

    Any further ideas please send to us.


    Lost Voices - The Book

    The book has now been distributed to fifteen
    countries with some taking many orders and sharing
    the cost of distributing them to others. The book is
    being sold on a not-for-ptofit basis so that as many
    as possible can make use of this valuable aid to
    educate people about ME.

    We are pleased that three libraries and two PCTs
    have also ordered Lost Voices. If you belong to a
    support group please suggest that it is added to your
    group's library.

    Medical libraries

    We have always believed that better education is
    the key to improving the situation and the hopes for
    the future for people with ME.

    One of the voices in the book, Stacey, has
    pre-empted our plan to make the book more widely
    available to the medical libraries around the country.
    Stacey has contacted many people and raised
    enough money to enable Invest in ME to donate a
    copy of Lost Voices to all medical libraries in the UK.
    Stacey is continuing with her fundraising to help us
    send copies to all teaching hospitals as well.

    We hope this will directly help and influence
    healthcare staff.

    [Thanks to Jan van Roijen of Help ME Circle for putting all this information on one page. For more information on Invest in ME, see]

    [This Message was Edited on 03/21/2009]
  2. SpecialK82

    SpecialK82 New Member

    Thanks so much for posting - you are always a wealth of information.

    I will start praying that this conference will help us to move further in diagnosing and treating this DD - hopefully some government officials will be shamed into attending (this is ridiculous).

  3. AuntTammie

    AuntTammie New Member

    to be able to attend this conference....even the pre conference alone would be so great to be able to be at....if only the idiots in the govt would get their heads our of their a**es and decide to go