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6th April | Dr Charles Lapp talk | Auckland, New Zealand

Discussion in 'Upcoming ME/CFS Events' started by CFSNZ, Mar 7, 2017.

  1. CFSNZ

    CFSNZ

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    Dr Charles Lapp is speaking in Auckland (New Zealand) on 6 April. Thanks ANZMES for coordinating this. It's a free talk and everyone is welcome [​IMG]

    Details here
     
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  2. Cohen2

    Cohen2 Senior Member

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    Hes speaking in other NZ cities as well. I know Dunedin is 28 March. @Hutan
     
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  3. Hutan

    Hutan Senior Member

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    Thanks @Cohen2 (and I hope you are doing better than you were a while back)

    I was sort of considering a trip to Auckland to listen to this and do a couple of other things. But perhaps Dr Lapp will be in Christchurch. I'm not hooked in to the local MECFS organisation here as they didn't seem to think along the same lines as me about the illness. I'll try to find Dr Lapp's full NZ schedule.

    Here's some background about Dr Lapp for those not very familiar with him.
    http://www.prohealth.com/library/showarticle.cfm?libid=13125
     
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  4. CFSNZ

    CFSNZ

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    I suspect he is coming to Christchurch too. May want to flick ANZMES an email (info@anzmes.org.nz). They will know and their office admin lady is very friendly and helpful :)
     
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  5. Hutan

    Hutan Senior Member

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    Thanks @CFSNZ, I did that. Here's the schedule:

    Auckland

    Auckland CCS Disability Action
    Kauri Room (Bottom of the Drive) Thursday 6th April 1pm – 3pm
    14 Erson Avenue
    Royal Oak, Auckland


    Napier – Hawkes Bay
    Venue: Greenmeadows 1st April 10.30 – 12noon
    East Community Hall
    83 Tait Drive
    Greenmeadows

    Nelson
    Nelson Suburban Club, 29th March 10.30 – 12.00
    168 Tahunanui Drive,
    Nelson

    Wellington - still arranging

    Hamilton

    Ambassador Hotel 4th of April 5.30-7pm
    86/92 Ulster St,
    Whitiora,
    Hamilton North

    Dunedin

    Dunedin Community House 27th March 10.30 – 12 noon
    Alexander McMillan Room
    Moray Place
    Dunedin
     
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  6. CFSNZ

    CFSNZ

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    Awesome stuff thanks @Hutan!
     
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  7. lilspiral

    lilspiral

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    For those wanting Wellington details, these have just been published and can be viewed on the WellMe website.
     
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  8. CFSNZ

    CFSNZ

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    Important update on Dr Lapp talk, 6 April (this Thursday) - limited capacity and seats allocated on a first-come-first-served basis.

    Dr Lapp's talk has been very well-attended in other cities around NZ, with numbers often doubling expectations. There is a risk we may not have capacity for all who would like to attend here in Auckland.

    We will film the event, so you can watch the talk without having to attend in person. The video should be uploaded to YouTube in the next couple of months. We will drop members an email when its ready to watch (not on our membership list? Sign up here so we can email you when the video is ready http://www.meauckland.org.nz/join-us)

    For those who would like to attend in person, please be aware that seats will be allocated on a first-come-first-served basis. Sadly health and safety regulations mean we cannot exceed the venue's capacity. If the seats are all filled we unfortunately won't be able to accept any more attendees into the venue.

    Thank you everyone for your understanding. We want to make sure as many people with CFS/Fibro benefit from this talk as possible, and we hope the video helps make it accessible to all.

    Event details here :)

    http://www.meauckland.org.nz/drlapp
     
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  9. lilspiral

    lilspiral

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  10. Hutan

    Hutan Senior Member

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    Thanks to everyone involved in having Dr Lapp come to NZ and to Sandra for organising the radio interview. I couldn't get to Dr Lapp's talks so I was very interested to hear what he has to say this morning on the Nine to Noon programme.

    I think it was useful. Clearly Dr Lapp's aim was to get the message across that the disease is not psychological. He won't have convinced those who strongly believe that is, but he may have given others cause for thought. I made some notes and will record them here. They aren't word for word, just the gist of things. Words in < > are broad summaries. Words in italics are my comments.

    Presenter: For a long time the medical profession has been sceptical about CFS.
    Lapp: And they remain sceptical. That's one of the reasons why I'm travelling around NZ. There is now lots of evidence that it isn't psychological.

    Presenter: I remember there was some thought that the immune system is going into overdrive after something like glandular fever and staying in that heightened state.
    Lapp: Yes, the immune system is upregulated in one part and downregulated in another. It's like a car with the accelerator pressed down but the brake on.

    It's a systemic disease, many parts of the body affected. <NIH, IOM report mentioned > - it concluded a better name is Systemic Exertion Intolerance Disease. <Exertion intolerance explained>

    Presenter: Is there any biomarker?
    Lapp: no marker but there are tests that are suggestive, can confirm a diagnosis
    Sees spots on the brain in MRIs of 80% of patients; cerebral blood flow decreased

    Presenter: Treatment?
    Lapp: Just management of symptoms at this point. We don't have a known cause. <explained symptoms>. We treat the pain and sleep problems. <explained PEM> If they try to push through the fatigue, they end up in bed for two or three days. (perhaps an opportunity lost to explain how debilitating the disease is, to mention what it's like for people with severe ME)
    We see myoclonus, jerking, in patients and terrible nightmares (really?, I'm sure some patients have these but I wouldn't have thought they were a defining feature. My family hasn't had terrible nightmares. In fact I think I didn't have or at least recall dreams at all in the first year. I don't think the highlighting of that symptom in particular was helpful in the aim to suggest the disease isn't psychological.)
    Patients never wake up feeling refreshed.

    Presenter: Are patients in a hypometabolic state?
    Lapp: That's a current hypothesis proposed by Naviaux. Patients are conserving energy, patients may be protecting themselves against damage, either real or anticipated. (this was slightly unhelpful I think - saying that the patients are doing this rather than their cells).
    <Explanation of multi-site study, funded by CDC. Several groups of CFS physicians, longitudinal study of patients. Blood, exercise and cognitive studies. Trying to determine the best way to examine patients, the best surveys. This is important as the symptoms are mostly subjective.

    Presenter: What is the relationship between fibromyalgia and CFS. Fibromyalgia is a form of arthritis, is it not?
    Lapp: The diseases are very similar. When pain is a major symptom, we call it fibromyalgia. When fatigue is a major symptom, we call it CFS. In fibromyalgia there is a substance in the muscles that makes the patients feel pain more than healthy people. Fibromyalgia is not arthritis, the pain is not in the joints.

    Presenter: How widespread is the disease?
    Lapp: very widespread. GP's will be seeing these patients. But you have to be looking for it, it is mostly missed. People can go three or four years before they are diagnosed. There's nothing worse than knowing you are sick and not having that recognised. It's not an obvious disease, you can't tell just by looking at someone. It's not psychological.

    Presenter: Drug treatments?
    Lapp: very positive time for people with CFS. We've been studying Ampligen, so far that isn't approved. Norwegian studies - two oncologists found that a chemotherapy drug improved both the lymphomas that they were treating but also the CFS that some of their patients had. Rituximab. Studies are ongoing to explain why a chemotherapy drug works for CFS. People with CFS have high levels of TNF-alpha. We are looking at drugs to reduce this - these drugs are used to treat arthritis and ulcerative colitis. Hopeful that there are drugs that will help.

    Presenter: What about neuroplasticity? looking at things differently? (not sure I got the exact words here) I don't want to suggest it's psychological but can some of these therapies help?
    Lapp: I'm not aware of any of that type of therapy that might be helpful that are particularly well studied.

    END
    ok, so this is me back again. I think it is unfortunately difficult to sound credible when talking about ME/CFS as a biomedical disease. It will stay difficult until there are very clear biomarkers. But Dr Lapp did a good job and the interview certainly makes a positive contribution to the public having a useful understanding of the disease.
     
    Last edited: Apr 3, 2017
  11. duncan

    duncan Senior Member

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    IMO, what he says may be emblematic of the 80-20 rule which often characterizes some of our advocates: 80% of what they opine is helpful and moves forward the conversation; 20% is pure shit.
     
    Last edited: Apr 3, 2017
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  12. Shoshana

    Shoshana Northern USA

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    Thanks to all, for the info on this, and for those notes, especially, @Hutan
     
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  13. OverTheHills

    OverTheHills

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    The podcast of Dr Lapp's segment is available now. Look on the right hand side of this page: http://www.radionz.co.nz/national/programmes/ninetonoon. I think you can download from anywhere in the world.

    My view is that this is very good for us although not perfect. I am not a neutral observer here, I was involved in a small way helping to get this set up). I think the criticisms/defects we see (eg chronic fatigue in the title and even naming it as CFS/ME make me wince) are insider criticisms.
     
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  14. CFSNZ

    CFSNZ

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    The talk now up on YouTube:

     
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