Look What's Going on Today, 5/12/06 Landmark Fibro Conference

Discussion in 'Fibromyalgia Main Forum' started by JLH, May 12, 2006.

  1. JLH

    JLH New Member

    Landmark Dutch Conference - being held today, 5/12/06.

    In celebration of its twentieth anniversary, the Dutch fibromyalgia patient association, F.E.S., is hosting an international conference on the subject of fibromyalgia as a multidisciplinary chronic disease.

    Excellent speakers from the US and Europe will give a survey of the development and outcome of recent studies about fibromyalgia.

    These studies may contribute in finding an adequate treatment for the group of patients and in reaching more consensus about the existence of fibromyalgia.

    The F.E.S. invites all relevant experts to attend this conference and hopes to increase the knowledge of fibromyalgia and to improve the management of the patient.

    The conference will take place Friday, May 12, 2006, at "NH Koningshof" in Veldhoven, The Netherlands. Speakers include Dr. Robert Bennett of Oregon Health and Science University; Dr. Rinie Geenen of the Department of Health Psychology, Utrecht University; Kaisa Mannerkorpi, PhD,
    Associate Professor, PT, Salgrenska Academy, Dept. Rheumatology, Göteborg University, Sweden; Dr. Muhammad Yunus of University of Illinois College of Medicine at Peoria; and others.

  2. hugs4evry1

    hugs4evry1 New Member

    It would be nice if the doctors would go, listen and learn something.

    I just wonder how many would go if they already think this is "all in our heads"?

    Sorry, I think I may have a bit of a bad attitude today.

    Nancy B.
  3. JLH

    JLH New Member

    Don't worry about the bit of a bad attitude!!!

    We all have them!! Some days more so than others!!! LOL

  4. julieisfree05

    julieisfree05 New Member

    Hi all,

    I just received this email from the Co-Cure mailing list. It's a review of the conference on 12 May in London. FYI only!


    I just wanted to get in a quick note to tell everyone how successful I
    believe the London M.E. Conference was on May 12. The speakers
    were well-chosen both for their deep knowledge and understanding
    of the illness, and to give a broad representation of different
    issues involved in understanding M.E. today. I did get
    to meet Dr. Ian Gibson, Member of Parliament, in person, and I only
    wish we
    had someone on Capitol Hill in Washington who would start an inquiry
    into the reasons that M.E. somehow became "CFS" in the United States.
    I have high hopes that the Gibson Inquiry in Parliament will help
    put support for M.E. back on the right track.

    It was a lot of fun to meet people I have known for years
    on internet - though it was also sad, because many are too
    sick to come out any more. It only served to remind me of
    the urgency of the mission to tell the world about M.E.,
    to learn how it is caused and the best way to treat it,
    and finally to come up with new testing and treatments
    through support for good, solid, sound, unbiased scientific

    Dr. Ian Gibson, Member of Parliament, spoke about the progress
    of the Gibson Inquiry. He was followed by Dr. Bruce Carruthers,
    who explained the ME-CFS Consensus Documents (and provided all
    of us with copies of the summary version). Dr. Carruthers'
    summary can be found at this website:

    After a break, Dr. Malcolm Hooper gave an excellent summary
    of the state of biomedical research today. Dr. Hooper stressed
    in particlar the damage that the so-called "biopsychosocial"
    model of M.E.-CFS has done to patients. Both doctors and patients
    are being told not to listen to what the patient knows about
    his/her own body, not to trust how the patient feels about his/her
    own body, and not to trust the patient's own thoughts about the
    illness. In other words, the patient becomes an inanimate,
    inchoate Thing. He continued to show that here is no hard
    evidence that Cognitive Behavior Therapy and Graded Exercise
    Therapy (CBT and GET), the only treatments to come out of the
    "biopsychosocial" school, actually works. In fact, studies
    have shown they have been dismal failures when used on the
    group of patients in the UK who call themselves the
    "twenty-five percenters" because they are the subgroup of
    M.E. patients who become so ill for so long.

    Jane Colby, who published a pathbreaking book on ME-CFS in
    children in 1996 and continues to research the problem, talked
    about the problems that children in the UK are having with
    recognition of their illness and special needs. I found her
    current work on clusters outbeaks among schoolchildren to be
    very interesting and promising. She said that the outbreaks
    follow the same pattern of polio outbreaks decades ago.
    I thought it was a brilliant idea to follow the geographical
    design of outbreaks among children - much easier than doing
    so among adults, and I believe this research is going to
    provide us with a lot of information about how this disease works.

    We heard the hearbreaking story of yet another unnecessary
    and young death, beautiful young Sophia who could not get a
    doctor who would treat her disease as something other than
    psychosomatic, and after a horrific experience of being committed
    unwillingly to an institution, eventually died last year of what
    can only be called medical neglect at the young age of 32.

    After lunch we were treated to Dr. Byron Hyde's description
    of the development of M.E. and CFS; the deep problems presented
    by various CFS research definitions; and what we already KNOW
    bout the pathophysiology of this disease. Dr. Hyde emphasized
    that fatigue cannot be the defining criteria for the disease
    because profound fatigue is a characteristic of ALL major
    illnesses. The single defining symptom of ME-CFS is BRAIN DYSFUNCTION.
    If a patient doeds not have CNS dysfunction, they do not have M.E.

    Dr. Jonathan Kerr presented a fascinating description of his own
    current genome research, separate from that of the CDC. I was
    pleased to hear that while all of the patients in the study fit
    the Fukuda and CDC current definitions (so the research can be
    compared with that in the U.S.), Dr. Kerr was careful to include
    patients who were bedridden - the type who do not normally end
    up in studies because they can't come out to the clinic.
    I want to write about this study in more detail later, but
    I was convinced after the formal talk - followed by a private one -
    that he has succeeded in finding usable markers that will help
    demonstrate the physicality of the illness at the same time it
    leads to markers to diagosis it, and help lead pharmaceuticals
    to be able to develop treatments. Dr. Kerr is following his first,
    small study with a larger one, but thus far he believes he will
    be able to demonstrate conclusively that ME-CFS is a multi-systemic
    disease, and that Interferon-B may be able to help.

    Dr. Basant Puri's presentation on lipid neuroscience was a bit
    difficult, but interesting. Using multi-nuclear SPECT topography
    he has been able to find that patients with M.E. have raised levels
    of cholin, CRr/PCr, and NAA, which is in line with what some other
    researchers are finding, specifically Chaudhuri (2003), using proton
    neurospectroscopy, and Tomoda (2000).

    The speakers at the conference were all very clear and informative -
    The conference sold out, so every seat was taken, and I got into
    trouble for making too much noise typing (couldn't find any place
    to hide) - so I'll have to decipher my handwritten notes and my
    handwriting, I am afraid, leaves much to be desired.

    I have jetlag - and tied-lag from just getting to be in London! -
    so it may be a week - but I promise everyone a good thorough report.

    Of course, in the meantime there could be one come out on the
    Invest in M.E. website, which is here:

    I could not complement this group more - they did a terrific,
    professional job. My heartfelt thanks to all the speakers,
    who gave their time freely to this project. I am so grateful
    I had an opportunity to attend.

    Mary Schweitzer

    Send posts to CO-CURE@listserv.nodak.edu
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    Co-Cure's purpose is to provide information from across the spectrum of
    opinion concerning medical, research and political aspects of ME/CFS
    FMS. We take no position on the validity of any specific scientific or
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    She could have laid in bed for hours
    givin' misery the power
    but she didn't have time.. - Terri Clark

    [This Message was Edited on 05/16/2006]
  5. hugs4evry1

    hugs4evry1 New Member

    Thanks for posting that...very interesting.

    Nancy B.
  6. Juloo

    Juloo Member

    I have a sister-in-law who is a doctor (foreign, research, not practicing) who sent me some treatment information for ME/CFS last year -- all the CBT/graded exercise stuff that the psycho's suggest because "it's all in my head".

    She really didn't know better. But now I have something up-to-date to send in response so that she can be educated.

    Thanks again!

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