The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Invest in ME International Conference 29 May 2015, London

Discussion in 'Upcoming ME/CFS Events' started by Kate_UK, Feb 7, 2015.

  1. Kate_UK

    Kate_UK Senior Member

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  2. ukxmrv

    ukxmrv Senior Member

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    Nice to see the Norwegians back again
     
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  3. taniaaust1

    taniaaust1 Senior Member

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    I must not be up with things as I dont recognise most those names.
     
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  4. ukxmrv

    ukxmrv Senior Member

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    Jonas Bergquist

    "The study referred to in this news report was published in 2011. (See below for a link.) The researchers compared cerebrospinal fluid from 10 healthy controls with the fluid from people with CFS (using the Fukuda case definition) and with
    Neurologic Post Treatment Lyme disease syndrome (nPTLS),"

    After examining the cerebrospinal fluid samples, the research team discovered distinct sets of proteins which could accurately distinguish between the two illnesses and differentiated them from healthy controls. The study identified 738 proteins that were found in CFS, but not in either healthy normal controls or nPTLS;

    http://www.cfstreatmentguide.com/blog/january-23rd-2013
     
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  5. ukxmrv

    ukxmrv Senior Member

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    Both Jo Cambridge and Amolak Bansal have an interest in B cell immunity (and therefore linking into the iIME Rituximab trial)

    Clarie Hutchinson is involved with research into eye/vision problems in CFS
     
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  6. Bob

    Bob

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    Thanks for the info, ukxmrv.

    These are the relevant forum threads for the 2011 cerebrospinal fluid proteomics paper:
    http://forums.phoenixrising.me/inde...distinguishes-lyme-from-cfs.8871/#post-166079
    http://forums.phoenixrising.me/index.php?threads/new-video-on-me-cfs-proteome.34129/
     
    Last edited: Feb 9, 2015
    oceiv, ukxmrv, August59 and 1 other person like this.
  7. cirrus

    cirrus

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    IIMEC10 Keynote Speaker Announced

    "IiMER are delighted to announce the keynote speaker at IIMEC10 will be Professor Ian Charles. Professor Ian Charles will join the Institute of Food Research in May 2015 to lead the programme to develop the UK’s new Centre for Food & Health to be based at the Norwich Research Park.

    Professor Charles returns to the UK from Australia where he was Director of the ithree institute, University of Technology, Sydney.

    Professor Charles has over 30 years’ experience in academic and commercial research. His academic career has included being a founding member of The Wolfson Institute for Biomedical Research at University College London, one the UK’s first institutes of translational medicine.
    His current research interests include infectious diseases as well as the microbiome and its impact on health and wellbeing."

    http://www.investinme.eu/IIMEC10-news.shtml
     
    oceiv likes this.
  8. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hypothalamus dysfunction/damage:

    I hope we hear of some data regarding pituitary antibodies at this conference. Dr Bansal briefly mentioned a group was looking at this in a talk a while ago, but no news since. To find a key neuro inflammatory, neuro immunological reason behind inability to cope with stress, would be a big finding in my opinion.

    If your brain can't signal to your adrenal glands to increase cortisol you would become unable to cope with stress, even if your Short Synacthen test was normal showing an adequate cortisol reserve. (One hallmark of ME is an inability to cope with 'stress', physically). There has to be a reason why regarding utilization of cortisol, we become overwhelmed.

    One way of showing this brain damage (such as from a virus), is if patients can have low GH/ low cortisol using a Glucagon stimulation test (GST), who 'pass' the Short synacthen test to rule out Addison's disease (Potentially fatal adrenal failure). Naturally, having this test is next to impossible, due to the NICE guidelines in the UK recommending apparent fraud based research (GE + CBT) to reduce the symptoms of ME. So very few ME patients would even have heard of a Glucagon stimulation test (who have adrenal problems), never mind actually had access to one. (Years ago there was talk of adrenal gland size reduction in some CFS patients. Perhaps researchers could follow that up for us, regarding patients who have low normal cortisol, over many years, to see if they too had atrophy of their adrenal glands, OR, they were small to begin with).

    Muscles and ME.:

    I wonder if muscles are now a dirty word in UK CFS research? I miss the muscle research a lot. Will we hear of any this year or in the future? Other than the pain from high levels of oxidative stress, if your muscles were full of acid, they probably would be painful. Dr Newton's UK research (out of the body admittedly) was showing this finding in a petri dish using muscle biopsy samples. I wonder what will happen to this line of work (abnormal muscle cell pathology in CFS), if the IOM manages to destroy ME forever, also in the UK? I guess it makes it harder for work to be funded, Vs if muscle pain had been a diagnostic criteria for SEID.

    I see there was a 1 million grant given to the psych lobby again a while back (after the PACE trial) for exercise therapy in children without ME. Just think what biomedical researchers could do with large grants, targeted as specific areas of ME pathology in large scale studies, using the correct cohort (people with muscle pain, muscle weakness).

    Unfortunately SEID and Fukuda CFS prevents any meaningful data due to the heterogeneous cohort problem. I hope that Invest in ME keeps it's name, and doesn't alter it's name to Invest in SEID. It's quite shocking a UK charity is at the forefront of sharing medical knowledge, whilst the Gov't continue to sit on their hands, massaging psychiatrists ego, and funding them handsomely for apparent scientific insanity in which a claim is made of a recovery using a treatment, but recovery means to relapse and the data from studies isn't allowed to be given to the public, despite them funding it!

    Maybe one day, Invest in ME will be able to announce that because of a pathogen finding (likely from America or Europe), that the Govt will now invest in ME, rather than a charity having to. That would be a great day for science and the medical profession waking up from a self induced sleep.

    It's actually very sad that 10yrs has past for Invest in ME, and precisely nothing has changed on the ground. CFS/ME centres in the UK are useless, because no treatment has been validated to work. (Imagine an MS specialist nurse, with no drugs). There are no ME specialists nurses obviously. Maybe in 2030.

    The UK treatment remains CBT/GE and convincing yourself you don't have an underlying organic disease. A tilt test is no permitted (to prove ME associated autonomic dysfunction).
    I'm praying that a ground breaking finding, one day at an Invest in ME conference, but faith, so far, has gotten us nowhere. What we need is funding, funding that won't be given if the condition cannot be proven to exist in the first place (Fukuda and SEID diagnostic criteria).

    It was 1969 for 'ME' being officially recognised, 46 years ago, which means a neglected 30 yr old ME patient (if still alive) is now aged 76 and never had a life since they became sick in their prime adult years. Now remember the poor children also.

    At least Invest in ME can say they played no part in that and tried their best, and I congratulate them for all their efforts in trying to save lives, rather than prolong misery (current Govt approved response). It's great charities exist, and it's vital than when possible we donate to charities who do actually fund quality biomedical research.
     
    Last edited: Feb 24, 2015
    bertiedog likes this.
  9. Kate_UK

    Kate_UK Senior Member

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  10. cirrus

    cirrus

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    http://www.investinme.eu/IIMEC10-news.shtml

    New Conference Speakers Announced
    Two more speakers almost complete the IIMEC10 line-up.

    Professor Betsy Keller from Ithaca College, USA, has expertise in the two day CPET testing involving ME/CFS patients and has published research inidicating unusual results in these patients.
    Professor Keller was also on the USA Institute of MEdicine (IOM) panel that recently published a report on ME/CFS.

    Dr Neil Harrison from Brighton and Sussex Medical School, UK, works on understanding how infection or inflammation in the body interacts with the brain. He utilises a combination of functional brain imaging (e.g. fMRI, FDG-PET, EEG, polysomnography), experimental models of inflammation, custom cognitive tasks and diverse measures of peripheral immune status.
    This is one area of research which needs to be covered in our strategy of biomedical research into ME and similar research from Japan suggests that this is a promising and emerging area of research for ME.

    [​IMG]
     
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  11. Kate_UK

    Kate_UK Senior Member

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  12. eafw

    eafw Senior Member

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    Why is this a closed conference, and do we get any reports back on the talks/sessions held at all ?
     
  13. Bob

    Bob

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    The IiME conference is open to all members of the public, and tickets can be bought in advance by anyone.
    There is usually a large amount of reporting from the conference, and there is also a DVD made of the entire conference, available to purchase afterwards.
    These are always really good conferences, and the conference DVDs are really interesting.

    Associated with the conference, there is also a day (or I think it's two days this year) given to the researchers and presenters to network. This isn't open to the public, but gives the researchers a chance to discuss their research with each other, and to get to know each other. Reports from previous conferences have suggested that this has been a highly successful event.
     
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  14. eafw

    eafw Senior Member

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    The researchers event is what I was thinking of, but was mixing it up with the AfME one (coming up in October) which has closed sessions for researchers too.
     
  15. Hip

    Hip Senior Member

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    Invest in ME sell (for £12) a DVD set (with typically three or four DVDs) containing all the presentations given at their conference. I bought these DVD sets for a few of their past conferences. I found them very informative.
     
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  16. Sasha

    Sasha Fine, thank you

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    Yes, I've bought those and will again this year. They sell them at cost, and given that no money therefore goes back into the charity I wish it was possible for them to put the video up on Youtube, which would save them a lot of work and make the info much more widely available - but I assume they've got their reasons for not doing that. Maybe the researchers aren't comfortable with it.
     
  17. ukxmrv

    ukxmrv Senior Member

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    Sometimes the DVD's are delayed and the content needs to be edited because researchers announce findings at the conference that are awaiting publication.

    It would be wonderful if the conference was live-streamed even as "pay to view" though.

    I do appreciate that IiME have a lot of expenses to cover in order to arrange a conference. Meeting rooms are very expensive in London and most of them want payment early and upfront. It must be very hard for IiME to do this year after year.
     
    Last edited: Apr 28, 2015
  18. cirrus

    cirrus

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    BRMEC5 Colloquium Maximum CPD Points
    [​IMG]
    "The Biomedical Research into ME Colloquium 5 has been awarded maximum 12 points for the event which occurs on 27th - 28th May in London.

    Clinicians attending both BRMEC5 and the 10th IiME International ME Conference 2015 - IIMEC10 - can now receive 18 CPD points from these events.

    The BRMEC5 research meeting now has well over 60 participants attending from thirteen countries.

    Based on the charity's strategy of facilitating and funding international biomedical research into ME we hope for two great days of collaboration to progress research into ME."

    http://www.investinme.eu/IIMEC10-news.shtml
     
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  19. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Sasha and halcyon like this.
  20. Kati

    Kati Patient in training

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    Last year North America was prohibited from buying the DVD set because actually someone put the content on You Tube. This sale of DVD represents a source of charitable funding for this organization which stretch itself really thin in prder to provide services and hold one of the most reputable scientific meeting year after year after year.
     
    ukxmrv likes this.

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