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United Kingdom: ME Research UK (MERUK) News

Discussion in 'General ME/CFS news' started by Andy, Feb 23, 2018.

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  1. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    “
    I hadn’t realised this was now planning on building on the biobank in existence or that what we are waiting on isn’t actually a grant but if there would be support for such a thing.
     
    Last edited: Jun 7, 2019
    Cinders66, Jun 7, 2019
    #21
    arewenearlythereyet and mango like this.
  2. Andy

    Andy Committee Member

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    To my recollection, this is the first public information on the recent efforts from the CMRC.
     
    Andy, Jun 7, 2019
    #22
    arewenearlythereyet and Trish like this.
  3. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    There hasn’t been much in the public official domain on this, I’m not a UK charity member so perhaps they have been told more. The ME association did mention waiting on something in the context of the recent minutes. I had assumed that it was a grant submission being waited on , I don’t know how Many others had speculated and assumed the same, it is disappointing to me that this seems another step in a v long process. I mainly put my hopes in America now on everything as I don’t look more than 5-10 years ahead.
     
    Cinders66, Jun 7, 2019
    #23
    Trish likes this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    Why do organisations persist with these paper style formats when everyone reads online now. Three column format is so 20th Century and not easy to read on screen.

    ETA Maybe this comes across as grumpy reaction but the format stopped me reading it. I’ve sent MERUK an email and link to some useful guidance on making online content accessible
    https://www.gov.uk/guidance/how-to-publish-on-gov-uk/accessible-pdfs

    ETA2 I’ve just realised the irony that one of the articles is about reading difficulties in ME
     
    Last edited: Jun 7, 2019
    NelliePledge, Jun 7, 2019
    #24
    Simbindi, TiredSam, ringding and 9 others like this.
  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Just wondering whether two columns is considered a problem online? We changed our printed material to two columns from one column years ago as it is easier to read when printed. It also allows more on a page which is sometimes useful.

    What may be required are two versions, online and printed, but that does add to the workload.
     
    Last edited: Jun 7, 2019
    Dolphin, Jun 7, 2019
    #25
    Octogenarian likes this.
  6. NelliePledge

    NelliePledge Moderator Staff Member

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    Better to avoid 2 column. It isn’t easier to read as you have to scan down the page twice. If you use headings, sub headings, bulleted lists, plenty of white space and keep the wording succinct it will be easy to read both online and for anyone who still prints out.

    Fitting a lot on a page only cuts down on paper it is counterproductive for ease of reading and understanding. Bear in mind a lot of people look at information online on a tablet or a phone and very wordy articles are not suited to that especially a phone.

    Two versions would be a nightmare to manage - you’re likely to have issues with editing twice and get inconsistencies between formats. Also consider the accessibility issues for people with ME, some may use screen readers so the less complicated the layout the better.
     
    NelliePledge, Jun 7, 2019
    #26
    arewenearlythereyet, Octogenarian, Trish and 2 others like this.
  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I've just had a look on my phone at a PDF of a research paper where the abstract is one column and the rest of the paper is across 2 columns. The effective font size is quite small with the one column bit: it would get very tiring to read such a small font.

    I suppose this could be got around if the font size was a lot larger but that might add say 50% to the number of pages which could be a problem in many scenarios.
     
    Last edited: Jun 7, 2019
    Dolphin, Jun 7, 2019
    #27
    Octogenarian likes this.
  8. NelliePledge

    NelliePledge Moderator Staff Member

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    Yes I don’t think many people will get through a full copy of a research paper on a phone - the summary maybe. I thought you were talking about some kind of newsletters as in the original post. I think the format for research papers a whole different level of content from a newsletter. Pdf is pretty clunky to use online in my opinion it harks back to the days of websites being a place to publish documents to give access but assuming you’re going to print it out and read from page 1 to page 50. By chunking content up into chapters you can still get longer documents for specialist readers to work ok in HTML.
     
    NelliePledge, Jun 7, 2019
    #28
    Andy and Dolphin like this.
  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I was talking about newsletters. But the same principle seemed to apply that a one page column will result in a very small effect of font size to fit it to the width of a phone, unless a quite large font size is used. So I remain to be convinced that a one column version is necessarily better in many cases.

    Anyway, it has been interesting to hear your thoughts.
     
    Dolphin, Jun 7, 2019
    #29
  10. Trish

    Trish Moderator Staff Member

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    I agree the format makes it very difficult to read. And not helped by the bit about the CMRC plan being printed over a coloured picture. I've copied it here so I can read it!

    It then goes on to say MERUK is not on the CMRC but has given its support to the bid.
    I can see that they want to consult the funding bodies first before putting the effort into writing a full proposal and making a formal application for funds, but it does make things so slow.

    I've given up on trying to read the rest of the document because of the format. A pity.
     
    Trish, Jun 8, 2019
    #30
    It's M.E. Linda, Snowdrop and Andy like this.
  11. Andy

    Andy Committee Member

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    ME Research UK publishes its own magazine, Breakthrough, featuring updates on projects funded by the charity, recent research from around the world, information about our supporters’ fundraising activities, and other articles on ME/CFS issues.

    The most recent issue includes articles on the search for anti-citrullinated antibodies, reading problems in ME/CFS, the involvement of severely ill patients in research, the parliamentary debate on research, and new treatment avenues using pharmacogenomics.

    Download a pdf version or read the online version at Issuu.com.

    Past editions also available at http://www.meresearch.org.uk/information/breakthrough-magazine/
     
    Andy, Nov 22, 2019
    #31
    Peter Trewhitt, DokaGirl, rvallee and 10 others like this.
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    current job opportunities within ME Research UK.
    Science and Engagement Director ‑ Full-time
    https://www.meresearch.org.uk/vacancies/
     
    Sly Saint, Dec 19, 2019
    #32
    rvallee, Dolphin, ladycatlover and 3 others like this.
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://www.meresearch.org.uk/breakthrough-autumn-2020/
     
    Sly Saint, Nov 4, 2020
    #33
    alktipping, shak8, MEMarge and 6 others like this.
  14. Andy

    Andy Committee Member

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    https://www.meresearch.org.uk/introduction-to-the-brain/

    https://www.meresearch.org.uk/brain-research-in-me-cfs/

    https://twitter.com/user/status/1358716955780403201
     
    Andy, Feb 8, 2021
    #34
    Sidney, ahimsa, MEMarge and 14 others like this.
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