Friday, 12 September 2014

3rd MS Question Time Hangout from ACTRIMS-ECTRIMS



So this is the 3rd and final video of our MS Question Time hangout series from ECTRIMS-ACTRIMS. The Mouse Doctor was joined by Dr Ruth Dobson, Dr Jeremy Chataway and Emma Gray from the UK MS Society.

The speakers gave a summary of research presented so far at the scientific meeting and answer questions from Google+, twitter and email. 

8 comments:

  1. Informative. Thanks for including some of my questions.

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    1. Our pleasure...Thanks for joining in

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    2. Your welcome. I'm a little disappointed you shied away from questions with a slight political edge. You did say anything goes after all and the current treatment paradigms are a big issue. Perhaps your confidence inducing chinchilla will be braver next year :-)

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    3. Dear Lorna
      There was a list of 7 questions and as to shied away from political edge
      1: what is watchful waiting---asked
      2. What are pros and cons for delaying treatment...answered...Watch the burning debate
      3. Waht MRI markers predict high risk of conversion...lots of gadolinium lesions This is MacDonald MS.
      4.Should CIS patients presenting with diasabling conditions be considered for DMT..yes asked and answered
      5. How is active MS defined.. asked and answered
      6. Are induction therapies such as lemtrada a way forward or should be move away from older DMT...not asked but discussed in the burning debate
      7. Individual neurologists have different opinion, what can be done to improve equality of care amongst patients and ensure eligible access to treatment.. Good question.. This slipped off the list....This is the centre of the MS Society in the UK report about the post code lottery. Debating this would take up the whole hour and the answer would be UK centric from the panel. We had quite a bit of information to get through. I'll save this one for the next time we have a question time.

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  2. Noted and I agree my question regarding inconsistencies could rumble on. I put a similar question to commissioners some time ago and still wait a response. I also asked why the wait and see approach prevails in most parts of the UK despite new research and new approved drugs. It frustrates me that MSers are subject to Russian roulette style care and treatment despite strides being made in the understanding of the disease.

    Dr Kapoor highlighted the need to know what you’re dealing with in order to treat but as a rule MRI’s are not regularly repeated. Dr Vollmer made a strong argument for timely treatment suggesting speed of brain atrophy is at its greatest at disease onset. The message from him seemed to be saying saving brain volume delays disability yet active MS in the above talk included clinical presentation as well as MRI evidence. So using this definition a patient with continued brain atrophy and disease progression but few clinical symptoms may struggle to access more effective treatments. Given the EDS scale excludes cognitive disability which is known to be associated with brain atrophy why do clinical relapses still hold so much weight?

    Are Dr Vollmer's slides available to download at all?

    I look forward to more question times. Thanks for putting them on.

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    1. The relapse centric view I guess is because this is how the drugs were approved. The definition of "active MS" in the alemtuzumab appears to be more liberal than in the fore the use of other MS drugs as such some people with active MS may not fit the prescription definitions for some MS drugs,which is frustrating both for the neurologist and the PwMS as their hands get tied.

      I know that the ECTRIMS talks were all filmed but as they are trying to "sell" them I am not sure of their availability. Maybe Alison can contact Dr Vollmer to see if he gives permission to upload them and then we can either give link or profG can put on slide share.

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    2. I should say that Alison Thomson from the group organised the sessions both the Hangouts and the burning debates

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  3. Thanks for initiating this, thanks for your time.

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