Wednesday, 23 December 2015

NewsSpeak: Festive Wishes

What is your MS wish this festive season? #NewsSpeak #MSBlog

"The holiday season is a time for reflection and quiet contemplation. As I spend so much of time doing MS I can't help not thinking about what I want to be doing next year in the field. The MS Society's prevention meeting has made me realise that we need to spend more time and resource on getting our prevention efforts off the ground next year. This will include educational efforts in relation to smoking as a risk factor in children and siblings of MSers and their extended family, helping kick-start a big data vitamin D prevention effort and a sharper focus on EBV and infectious mononucleosis as the potential cause of MS."

"I wish we can get an anti-EBV trial off the ground next; I wish the peer-reviewers' give us an easier time than we have had in the past. What are your MS wishes this festive season?"


"Here is wishing your a very happy and healthy festive season from the clinical and research teams at Barts-MS."

24 comments:

  1. I wish NICE could accelerate the approval for Ocrelizumab.
    I am only 29 and PPMS is kicking me really hard.

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    1. IF YOU ARE GADOLINIUM POSITIVE YOU COULD TRY PUSH FOR RITUXIMAB AS OCRELUZIMAB IS 1-2 YEARS AWAY IS SUSPECT.

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  2. I wish that we all have a festive time of tranquility, health, and peace.
    I hope that um 2016 the efforts for more effective treatments and prevention of MS are united worldwide, who the community about MS unite efforts to achieve specific goals.
    That can, once and for all, solve what is the role of EBV and Vitamin D in the pathology itself, really define where these EBV and Vitamin D pieces fit the puzzle of MS, and there is no more doubt about this fit throughout the scientific community...
    I wish a lot of wisdom, strength, courage, prosperity and health to all Team G and Barts, you can continue this unparalleled work you do here, in the tests that you promote and daily fight against MS ...

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    1. Indeed! Happy holidays to the Barts team. Much thanks for your invaluable work, including this incredibly helpful blog.

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  3. MSwise in the UK I hope that the British voter pressures the current government to preserve the NHS as a free at the point of access according to need service. Generally would like to see a breakthrough on effect of diet in MS with a well designed study to test the various claims and counter claims. Oh and world peace. I keep thinking about how it would be to have MS in a war zone. Counting my blessings and thanking you all at the Barts blog for another year of information.

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  4. I wish people would start using the word Christmas, rather than Holidays or Festive Season. I'm not clear why people think it might cause offence! I wish in the new year that there's something positive on the repair side. I also wish that Team G can deliver a hit - either spasticity drug, or oral cladribine being approved. You guys work very hard, but there's been too many near misses / things that didn't quite work. I really thought your EBV trial was going to be your breakthrough, looks like I was wrong.

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    1. Before it was Christmas it was some sort of pagan festival to hurry the coming of spring and new growth. It only became Christmas when those of a religious persuasion "high-jacked" it in order to help bring the pagans into the Christian fold. No offense intended to those who are of a religious persuasion, but I personally prefer not to go OTT about Christmas - partly out of respect for those for whom it does hold religious significance, and partly in defiance towards the most recent highjacker - the Great God of Retail Spending.

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  5. Season's greetings to Team Bart.

    I wish for a year free from fear. To try to describe this for me it's like looking at a painting. A painting which captivates a family, love and life. In the corner of that painting is darkness, a figure with a loaded gun. The people in the painting appear to pay no outward attention yet look closely and they will have one eye focused on the barrel of the gun.
    I am looking forward to Christmas and the New Year, sadly the shadow of MS just makes things a little less bright.

    Please keep up the good work. You all do a fantastic job.

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  6. I wish for a year as relapse- and progress-free as possible for pwMS. And inspiration and funding for doctors doing MS research. Also, none of that PML crap for people treated with ocrelizumab, and in general no more PML news if those news are about new cases. And more openness from (certain) doctors regarding vitamin D benefits and dosage.

    Oh, and definitely more Copaxone papers showing new mechanisms of action because I think they make MouseDoctor smile.

    PS And lovely, peaceful holidays for the BartsMS team and readers of this blog. :)

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    1. I think Mouse doctor is angry that he didn't get in on the ground floor as an investor for Copaxone. He takes his frustrations out on his felow researchers who find new MOA's for it.

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    2. Ground floor as an investor I think most people weren't born then or if they were they didn't have any money to invest.:-)

      As to new MOA's and frustration....no it amuses me?

      These endless papers largely serve as a marketing exercise to keep the product in the mind of neurologists and pwMS. So I am sucked in and am spreading the word:-).

      It allows clinicians a chance to dabble in research to becuase until we know how it really works there will be an endless stream of papers. Yeah

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    3. It does seem like Copaxone has the biggest amount of research on how it works. And it's not bad, of course, it just feels like.. yeah, this thing is trendy, oh, Copaxone does it too, kinda. But at the end of the day, the efficacy is at the level we've seen. And it's been a long time, can we get something new Teva? What's going on with Laquinimod?

      And.. Copaxone unrelated - MouseDoctor, how do you feel about zebrafish for MS research? Thank you, Happy Holidays! Oh, new blog posts. /reading :)

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  7. My number one wish is for my MS to completely disappear and for me to then have a miraculous return to full and normal functioning - back to my pre-MS days.

    Well - I know that's not going to happen, so I wish for rapid and huge progress towards finding drugs with no side effects and decent efficacy for progressive MS (sorry - I'm not too worried about the RRMS-ers - they have plenty of options already).

    And I wish all of the Barts crew a happy Christmas and a safe New Year. Since I found this site a year or two ago you have educated me, enlightened me, helped me to understand this crappy disease better, made me think, given me the occasional laugh (thank you MD), helped me to make better informed decisions, enabled me deal with my neurologist on a more level playing field, and on the odd occasion given me a place to have a bit of a rant (none of which were directed at any of the Barts crew, she hastily added).

    So, even as a non-drinker, I raise a glass to the Barts crew - life would be pretty boring and uniformed without you all.

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  8. Merry Christmas and thank you Barts MS for all your efforts.

    How can you be so confident that EBV is the cause of MS? If it is the cause why has other not embraced the it and helped you get a trial off the ground? Is there anything we can do to help you in your efforts?

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    1. It is a hypothesis to be tested.

      Why have others not embraced...most are too embedded in the autoimmunity

      Is there anything...their is but ProfG needs to promote that site.

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  9. My MS Wish?

    I think it would be researchers creating a MS studies website so researchers globally could become more aware as a unit of both previous research and ongoing research. This sort of "spot" might result in researchers getting the puzzle pieces better aligned resulting in real sized jumps in mitigating MS.

    Since MS seems to possibly result from EBV,Vitamin D, Genetic predisposition to newer research such as blood in the brain, poor myelin reconstitution / maintenance, linkage between brain and immune system discovery, right down to proteins on cells. There is a great deal of work done, enroute and to come. It really (to me) makes a great deal of sense to have a repository at one place. Thus researchers can get latest data but someone might well see a big picture and fit pieces together.

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    1. I doubt many Researchers would read it, if it was not their site.

      However a Repository in one place....its called pubmed:-)

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    2. Merry Christmas to all of you.

      I am aware of PubMed. Its not really a casual daily browse type site. My fiance' was considering putting a repository MS specific out w/ automated daily email updates to researchers etc. But he said getting researchers to take the effort to link in their pubmed and/or other repo's would be problematic.

      Searches for example at PubMed he's saying to me dont necessarily have excellent standardized keywords. Thus information in respect to research that is applicable to MS but might be under a differing subject matter goes unexposed to researchers.

      If your saying that researchers are unlikely to look anyways... Thats rather alarming?

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  10. Happy,happy holidays to the Barts MS team and the blog followers from the team at the MS Trust. Wishing you all the best for 2016.

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  11. I would wish for a highly effective oral DMT to reduce relapses without the risk of kidney damage, hair loss, suicidal depression, affliction of liver function, nausea, diarrhoea, increased infection risk, headache or death. And most of all, a safe neuroprotective for everybody.

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  12. Merry Christmas to all Barts MS team, all at MS Trust and all following blog. Here's to a happy and healthy as possible 2016 xxx

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