Friday, 23 December 2016

#ThinkSpeak: Do you have any wishes for 2017?

Any MS ideas and suggestions for 2017? #ThinkSpeak #BartsMS #MSBlog

My 'holidays' started last night. We had dinner with a very good friend from my clinical firm in medical school. Her son has just graduated from Wits medical school in Johannesburg. This is 29 years after we graduated; where has the time gone? We all agreed that 2016 was an annus horribilis; I have never felt so unsettled about global, national and local events. It is clear that the status quo is not an option; change happens. Despite this I am grateful for what I have; my health, my family, a dog who loves me, I am still running, I have a vocation that continues to stimulate me and it makes me think and I think we are making a difference. I am determined to make the next 2 weeks count; I want to return to work rested, full or vigour and ready for the year ahead. 

Barts-MS has set it self many challenges for 2017; some are ongoing projects that need closure. However, there will be a few new ones and some that we have yet to think of. I would therefore like you to think about what you want us to do? Do you have any Christmas wishes, any ideas, any challenges for us and the wider MS community? Don't be shy this blog is forum for open and honest discussion. 




Merry Christmas and a Happy New Year or Happy Holidays!

37 comments:

  1. I'd like Team G to deliver something tangible i.e. a research paper that sets out a new understanding about the disease (contribution of EBV?). Too many research papers (not just Team G) add little to our understanding which means that they will add little to future research / treatments for people with MS.

    I also wish that Prof G would get some perspective on life. 2016 'Annus Horribilis'! What was 2016 like for the 55 year old man with PPMS you described in an earlier post! The EU referendum result and the US presidential have upset you. Get over it. It's sometimes good for a change and a shake-up - life would be so boring without such things. You may be a Prof, but in our democracy your vote has no more weight than a van driver in Southend. I suspect that this is hard for you to deal with. Take a deep breath and learn to cope. Happy Christmas to Team G.

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    1. Dear Anonymous at 12.35 on 23 Dec. Your post was written with spite. I think you're the one who needs to 'get over'. And why denigrate van drivers or Southend. Your post leaves a sour taste. I have family with Parkinnsons, Huntingdons, MS, Beechers, alzeihmers and cancer survivors. But none of them would ever makw an 'anonymous' post like yours.

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    2. With respect, Anon 12:35, your comment lacks logic in its conclusion: I don't think the ghastly political developments in the world in 2016 would have made the year for the gentleman with PPMS any better. But only he himself can say. And Prof. Giovannoni drew no comparisons.

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    3. So true. Prof G and his metropolitan smoothies haven't got a clue about how the rest of us are victims of austerity UK and ruthless degradation by those in London who seem to know better than the rest of us.

      Brexit made my year.

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    4. Re: "Prof G would get some perspective on life. 2016 'Annus Horribilis'"

      Brexit and Trump don't even come close to being in the top 10 of bad things that went wrong this year. But that is depressing story for another day.

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    5. "Brexit made my year."

      Don't speak too soon. What a lot of angry Brexiters fail to understand or don't wish to see is that the EU has little or nothing to do with their problems. (And why they're still aggressive when the referendum went their way speaks volumes in itself.) Very few people understand the totality of the consequences of Brexit.

      But this is not a platform for political discourse, so I'll leave it there.

      What I'd like to see in 2017 -

      - More understanding of the pathology of progressive MS.

      - Emphasis on EBV and anti-virals against EBV for people with MS to try. Although I recognise an argument made earlier on this blog that obliterating this evolutionary companion in our bodies may not be risk free...

      - Emphasis on Think Hand.

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    6. Sorry but you don't get to dictate to others what they should be stressed about.

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  2. My wishes for 2017 are two-fold.

    First, as a person with PPMS, over 60 and increasingly in need of the wheelchair, I would like to see much more effort going into understanding what causes MS.

    The progress of the Ocrelizumab trial is of little or no comfort to me: given my age and partial wheelchair dependency I will doubtless be excluded from NHS prescription of Oc, even though I still struggle on in a full time teaching job and pay taxes and National Insurance.

    I suspect that if a fraction of the effort and time that goes into developing drugs were invested in researching what causes MS, we would all be far better off (except of course for the highly paid execs. and shareholders of Big Pharma).

    Perhaps if the NHS were bold enough to divert some of its drug funding into such research, some downward pressure may be placed on drug pricing as Big Pharma would foresee a reduction of the MS gravy train.

    But I won't hold my breath.

    Secondly, and I don't know how this can be achieved, I would like to see a radically different approach by neurology HCPs to their patients. With the rare exception, over many years (most of which as a misdiagnosed MS sufferer) I have been met with a large degree of indifference by HCPs. It is as if pwMS are a nuisance to be seen and got rid of asap. Perhaps this is because neurology as a science is actually too hard for these HCPs. Compared with the HCPS in the cancer field (of which I have considerable experience through close family members) neurology consultants and doctors perform very badly.

    Perhaps I am cynical but I recall a doctor friend telling me a long time ago that those doctors who want an easy life tend to specialise in geriatrics. The reasons are, sadly, all too obvious. I suspect neurology may be second on the list for these people, for similar reasons.

    I exclude the Barts team from these comments.

    Apologies to anyone who is offended by these comments. Correction: apologies to anyone who is offended who doesn't deserve the offence.

    All that said, I sincerely wish all the Barts MS team a very Merry Christmas and Happy New Year. Keep up the good work!

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  3. Replies
    1. Dre got banned by Prof G.

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    2. Dre made this blog for me. I miss the lad.

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    3. The was one post that ProfG and Dre did not see eye to eye and I am led to believe that ProfG could not be bothered to continue with the discussion and stopped posts. I have no idea of the content.

      Maybe he's on holiday somewhere or gone onto other conditions.

      I agree about 90percent was entertaining but some of that said was garbage.

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    4. Dre is not banned and made an appearance a few months ago!

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  4. Merry Christmas and Thank you for the education.... We are very lucky that you share your hard earned knowledge for free.

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  5. My wish is that the founders and participants of this blog have a happy and healthy holiday and new year. I, for one, am extremely grateful for this blog. Despite some of the negative comments occasionally posted by trolls, I know that Prof. G, Mouse Dr.s', and the other members that contribute to this blog are truly committed to finding a cure for MS. Much thanks!

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  6. Please continue to do what you do so well ie. keep all those involved with MS so well informed and try to draw together all the different pieces of research so that one day things may come together to find the causes and a cure! So pleased you have suggested that MS is really one disease and that those labelled currently Primary and Secondary Progressive should not be written off, especially as most MSers will be in this category ultimately. Thanks for trying to help with your 'Think Hand' project. We really appreciate your work1 Happy Xmas to you and your team.

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  7. The usual, peace on earth and goodwill towards our fellow man. Let us try to think outside the box. New ideas seem ridiculous when they are initially purposed.

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  8. I would like 2017 to bring more "hits" about the causality of MS, whether it is EBV and / or low vitamin D ratio how they would actually lead to disease? I would like it to be also a year of really effective treatments against the progressive forms of MS, and maybe a year in which Science sets the way once for remyelination. Oh and a year in which treatment with Cladribine, or any other highly effective DMT is accessible to everyone.

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  9. Diagnostic tooling, in other areas we see multiple data sources combined with machine learning to see information that is not evident from any of the separate sources. Investigate separate patient data points to see if we can get a better picture.

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    1. Talking about diagnostics I have just read about an israeli breathalyzer being trained to identify various diseases, including some neurodegenerative diseases such as MS and Parkinson's by the breath, and can close the diagnosis of these diseases accurately.

      I also hope that the Charcot 2 and ThinkHand Projects will make positive progress in 2017...

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  10. I am from the United States so I just hope Republicans and Donald Trump don't screw up things too bad. For chronically ill people, it is scary times over here across the pond. Good luck everyone, I have a feeling we are all going to need it no matter where you reside.

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    1. Life and politics are cyclical; don't worry things will equilibrate.

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    2. A very wise comment, Professor Giovannoni. Everything, but everything changes. And Buddhism emphasises how clinging to things causes unhappiness; this helps me deal with MS. I also remember that Erich Maria Remarque wrote; “Keep things at arm's length... If you let anything come too near you want to hold on to it. And there is nothing a man can hold on to.”

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  11. My Christmas wish is that the Barts team keep happy and motivated next year. Following your blog is an integral part of my day-to-day coping... and that's regardless of the success or otherwise of your research. Stay well and strong. My thanks.

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  12. Prof G I would really like you to make a simple decision aid that I can use. The information out there on the pros and cons of the various drugs is very confusing. Thanks.

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    1. Have you looked at the MStrust website

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    2. A few of our patients have not liked the MS Trust site. They want the aid to make the decision for them. I will play around this week and see I can come up with something workable.

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    3. Thanks Mouse Doctor - this'll be the MS Decisions pages on our website - www.mstrust.org.uk/msdecisions.

      The decision aid allows you to select and compare DMDs in a simple, intuitive way. Our intention is to give the info you need to weigh up your options, talk it through with your MS team and agree a shared decision.

      Prof G - interesting to learn that some people would like the aid to make the decision for them.

      We're collecting feedback from anyone who's used MS Decisions - there's a link to the survey on the MS Decisions homepage - so do give us your opinion!

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  13. Ban comments from annonymous.

    A better understanding of progressive MS. I would love an explanation of why MS morphs from RR to SP.

    TeamG to continue their good work and to provide a positive platform for people with MS to read and increase their understanding

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  14. I wish for a decent scale to measure how MS affects people with the disease. The edss is not fit for purpose. Just one tiny example, a pwMS who has severe swallowing difficulties (but can walk unaided) can go from 5.5 on the edss (disability severe enough to preclude full daily activities) to 10 (death due to MS) in a few minutes.

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  15. Progress and predictions - progress in the release of new more effective DMTs and predictions for when it is likely a better understanding of causes of MS will be found. The second is unlikely, but would at least give some reassurance that science is moving forward..

    And for people not to worry about politics - things as never as good or as bad as expected / feared at the start.

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  16. I share the wish for knowing more about MS causation. I also wish that the disgraceful PIP and other anti disabled government strategies In the UK would,be turned around by a progressive government

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