Monday, 10 October 2016

NeuroSpeak: Do you think we should start UCTRIMS?

Do we need a separate umbrella organisation for MS in the UK? #NeuroSpeak #UCTRIMS

I received an email from a colleague over the weekend who suggested that the MS Community in the UK prepare for a Hard Brexit and start an organisation, and annual meeting, called UCTRIMS (UK Committee for the Treatment and Research In MS). What do you think? 

There are so many issues that need to be addressed regarding the management of MS in the UK, which involves neurologists, clinical nurse specialist, other HCPs and stakeholders, that UCTRIMS may be an appropriate umbrella organisation for these shared activities.

I agree UCTRIMS is a good idea, but if the enthusiasm for UCTRIMS is anything like that for the MS Trust's neurology masterclass it will be a non-starter. Please note due to lack of interest the MS Trust have now officially cancelled their Neurology Masterclass on the 7th November. The MS Clinical Nurse Specialist meeting will still be going ahead. Barts-MS will be attending we have several activities planned for the meeting.



9 comments:

  1. I don't think this should be linked to Brexit. There are enough national issues that need to be addressed to support a UK uber-MS umbrella organisation without making it a leave-EU issue.

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  2. MS conferences / workshops have mushroomed out of controls - ACTRIMS, ECTRIMS, PACTRIMS.... AAN, MS Life, European Charcot Foundation annual symposium. It's the same old cronies talking about their pet subjects (I won't name them here - they know who they are). I noticed couple of issues lately - the demise of the Myelin Repair Foundation, a freeze on the MS Discovery Forum (no more new postings). We are at saturation points with the number of MS societies, charities etc. In the UK we have the MS Society, MS Trust, MS UK. They all do very similar things - raise money, publish brochures, run websites... Prof G complains he has little time in his life, but then signs up to attend a large number of the conferences, workshops... May be it's time to get back to basics for research teams - answer the questions which will led to new treatments. With the internet, papers can e exchanged in seconds with other research groups, meetings can be done via video-conferencing etc. I'm sure everyone had a great time at ECTRIMS 2016 in London, but there was little to announce which hadn't been heard before. We need to scale back the MS industry which has ballooned out of control. Neuroprotection and repair should be the only grants which are funded. There are too many research projects which only report the blood obvious e.g. people who have MS may sometimes experience anxiety or depression (you don't say!). No more head to head trials of copaxone v rebif (we know that both are pretty ineffective). In an age where resources are scarce the focus should be on research to identify treaments to stop progression and encourage some repair.

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    1. You don't like the studies that confirm that pwMS should eat properly and get some exercise? .As for the drug studies...people who have critiqued big Pharma sometimes are never heard from again:-)

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    2. ....but there was little to announce which hadn't been heard before.

      That's because we are such a great news source:-)

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    3. Indeed you are! My go to place for all important MS news :)

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  3. How about OCTRIMS (Online Committee for Treatment and Research in MS)?

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  4. It doesn't surprise me that the MS Trust Neurology Masterclass has been cancelled. These seminars do take up travel time, time to recover when home again and unless they are funded or part funded places I'm not sure I would attend. I have to weigh up the most valuable use of my time and can I learn about what is being presented by other ways?

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