Friday, 18 March 2016

NewsSpeak & BrainHealth: MENACTRIMS 2016, Amman, Jordan

MS is commoner in the Middle East and North Africa than I thought. Why? #MENACTRIMS2016 #NewsSpeak #MSBlog #BrainHealth

"The following is the programme for the 2016 MENACTRIMS meeting in Amman, Jordan. I will be giving two talks and presenting several posters at the meeting. As usual I will be posting my presentations and posters on SlideShare for you all to read and browse. My first poster is on our 'Brain Health: Time Matters' policy. The policy document is beginning to get some traction. We have increased the number of organisations who have endorsed, or supported, the policy and we are in the process of doing some translations. We are also eager to find some local champions to promote the policy document in their own countries. The good news is that I have found a few neurologists already at this meeting who are keen to help with the initiative in their own countries. If you have not done so already, please download and read the document and if you are supportive of its principles please pledge your support online. The more people we have doing so the more likely we are going to get adoption of the policy document. It is for a good cause. Thank you."

'Our vision is to create a better future for people with multiple sclerosis and their families.'

17 comments:

  1. How many xxxtrims are there? Actrims, Pactrims, Ectrims, now another excuse to fly the same experts from all over the world to say the same things. In an age of public sector austerity, I dread to think how much these events cost + they take neuros away from doing the job they should be doing - treating patients. I'm guessing drugs companies fund much of these events and they in turn get their money from the public sector. If we are ever going to get waiting lists down in the UK perhaps its time doctors limited themselves when signing up to international conferences which have very little benefit to patients.

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    1. Well of course, the purpose of clinical conferences for many is to present new results, hear new data and make contacts for collaborations/trials etc and engage/coolaborate with pharma to try and get better treatments. They're not all jollies.

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    2. You forgot Lactrims:-)

      They cost alot...and I mean alot but this is how they thing marketing should go.

      If you go to a science meeting you get a table and a few leaflets, but it you go to a clinical meeting they are making gold leafed toilet roll:-)

      From the XCTRIMS point of view they are stand alone organisations led by academics however the pharmaceutical companies are charged for attending the more they pay the more promient they are...these are education/marketing meetings. A docotr must get what they call Continuing medical education (CME) points each year so that they are up to date with their knowledge. These meeting serve these processes.

      Pharma do surveys to se who people trust to give information and these people and the people who where involved in the trials tend to invited to present data. You see the same old names over and over again presenting the the trial results e.g Kappos, Hartung, Comi, Gold.....Giovannoni.

      Where do you want your information from Joe Blogs or someone with their finger on the pulse.....How many Joe Bloggs are in the wait and see brigade?

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    3. BCTRIMS (Brazil) & MEXCTRIMS (Mexico)

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    4. The purpose of these meetings is the dissemination of knowledge; conferences are very good forum to disseminate knowledge. I have also made many contacts at this meeting and will be using them to help with our brain health programme in their countries.

      As for work; I get more done when I travel. Not patient work, but academic work. Getting papers and grants written. I also get more sleep; 6+ hours a night instead of 4- hours per night.

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    5. Yep, all that billions of dollars, collaboration old the greatest minds, networking and revelry, and yet not one - I repeat, not one! - validated treatment to effectively treat progressive multiple sclerosis.

      Go watch the movie Love and Other Drugs to see how corrupt and decadent the medical conventions are.

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    6. "Yep, all that billions of dollars, collaboration old the greatest minds, networking and revelry, and yet not one - I repeat, not one! - validated treatment to effectively treat progressive multiple sclerosis."

      I totally agree. I'm pretty cynical about it all now. No one really knows how MS begins or why. What the exact nature of the pathology is. And certainly not how to fix it - progressive MS at least. When it comes to dreams, mine are about garden plans, watching wild birds, and time with loved ones, rather than hoping any more of anything to help my MS. But I hope it is better for people with MS in the future.

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  2. I would like to attend one of these conferences at some point. Are they invitation only? Can a curious MS patient like myself sign up for it?

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    1. Just pay the (steep) registration fee...

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    2. They are not designed to be patient meetings and I think there are implications for the pharma companies but people with Ms do attend these meeting however you also have to remember there may be hundreds of pounds required to register.

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    3. Fortunately, about a half of talks and more than a half of posters presented at ECTRIMS are available for free after the meeting - just look for ECTRIMS online library; one has to register, but it's free and very simple.

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    4. If you are in the UK, you could book in to the MS Life 2016 conference at ExCel in London (17-18 September). It's FREE. More info here: https://www.mssociety.org.uk/ms-events/ms-life-2016
      I attended similar event last year in Barcelona. Great opportunity to hear new research, and also for meeting others living with MS. Very inspiring.

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  3. Can I forward details of BrainHealth Timematters to various organisations I think should know about it/I think would be interested?

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    1. I can think of quite a few such as the RCGP. RCGP website states "We are committed to improving patient care, clinical standards and GP training.". GP's need to learn Timematters in MS in initial training and CPD.

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  4. pof g why are you talking about natural history of MS- not your field?

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    1. I thought my field of interest was MS; but may be I wrong? I was invited to talk on the topic. I didn't volunteer.

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