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Keeping a diary for M.E.

Discussion in 'Action Alerts and Advocacy' started by drjohn, Dec 4, 2011.

  1. drjohn

    drjohn Senior Member

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    PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

    Letters to the Editor.

    Many people affected by the illness M.E. (Myalgic Encephalomyelitis) have been keeping a diary for decades. It is an ideal way to record symptoms, experiences and feelings, as they happen and look back to see if anything can be learned from it. But individual M.E. sufferers are losing the best opportunity there is to compare all their observations with fellow patients, from all over the world, simply by not sharing them, as they could so easily do.

    To achieve this connection, for everyone's benefit, the M.E. Community Trust.org is inviting M.E. sufferers, to keep a diary in a uniform way, in order to attempt to better understand the cause, onset, progression and possible outcomes, using the benefit of a much bigger population for statistical analysis and mutual support. Safety and confidentiality is insured by each diarist, assuming an alias and saving data to their own computers to avoid any hacking or personal abuse.

    A more thoroughly explanatory press briefing has been sent to every national and local newspaper in this country,in the hope that features editors and health journalists will want to give it the further coverage it deserves. In addition, we have "ambassadors" in every country in the world - including Europe, USA & Canada, Australasia, the Middle East, Asia and Africa - who are publicising it in the same manner. It also appears on our companion Facebook page, My M.E. Diary 2012 Trial - http://www.facebook.com/pages/My-ME-Diary-2012-Trial/186206768135247

    As a prelude to potentially the most ambitious longitudinal study of M.E., on every continent, M.E. sufferers are invited to send an e-mail from their assumed name to mymediary@mecommunitytrust.org with "My M.E. Diary 2012 Trial" in the subject line today, or lose one of the best opportunities ever for combined co-operative strength. Think of it this way: If you don't do it, why should you expect anyone else to.

    Everyone who does makes the collective M.E. voice more audible and this awful illness more visible.

    Yours sincerely
    drjohngreensmith@mecommunitytrust. org
    Dr John H Greensmith
    ME Community Trust. org

    Some countries still without ambassadors to distribute letters and press briefings for this project.
    Some M.E. suport organisations conspicuous by absence of support.
    Two few diarists signed up.
    Please don't lose a good chance like this by leaving it to others -- who may be doing the same!
     
  2. Bob

    Bob

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    England (south coast)
    Giving this a bump:

     
  3. Morgaine

    Morgaine

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    Sounds like an interesting project.

    I already keep a symptom/treatment log, so I can see what helps me & what doesn't as well as to show to doctors & for benefit assessments etc so it shouldn't be too much of a stretch to take part in this.
     
  4. drjohn

    drjohn Senior Member

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    So many people with M.E.already do, Morgaine, so it is just a question of fomalising it for optimum mutual benefit. And I do see doctors being interested in what patients have to say, when they know that it is in an assumed name and confidentiality is as secure as it can be. I see it as quite a longitudinal study but we also have the benefit of retrospection too. We are getting exciting feedback already. Best wishes John
     
  5. drjohn

    drjohn Senior Member

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    UPDATE: Keeping a diary for M.E. and My M.E. Diary 2012 Trial (6 December 2012)

    PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

    Thanks to Action for M.E.'s Daily Press Summary for an update of coverage of our, "Keeping a diary for M.E." longitudinal project and introductory, "My M.E. diary 2012 trial", which do not appear online but only newspaper versions.

    Our introductory letter appears in these newspapers:

    Dr John Greensmith of ME Community Trust invites people with M.E. to start their new year diaries on a dedicated facebook page called 'My M.E. Diary 2012 Trial.' The aim: to record and share symptoms and experiences for future reference and to make the collective voice of M.E. more audible.

    Western Daily Press, p 18

    Western Mail (Cardiff), p 16-17

    Manchester Evening News, p 25

    News Letter (Northern Ireland), p 14

    For those living outside the UK (or who were not paying attention in geography lessons), these are newspapers serving major cities, quite evenly distributed, as people with M.E. are socially and geographically.

    It's a satisfying start.

    Our press briefing is being circulated - and we have even been asked by more than one Editor (Scotland is the most enthusiastic, so far) to send one because they have M.E. groups in their areas and want to know more.

    Thanks to all those who have already e-mailed for guidance to take part. Please bear with us. It is already bigger and taking longer than we thought.

    May I, therefore, appeal for more volunteers in all departments:

    - Any help from people in the UK to help with administration to promote here.

    - "Ambassadors" in every part of the world to forward both letter and press release to your national & local media OR get the details to us to do. We have some promises in USA, Canada, Australia and parts of Europe but we do need a lot more in the same and further afield.

    - As many diarists as we can get. Remember one less may not only be dilution but pollution.

    Please bear with us. I think there will be delays but I'm sure it will be worth it.

    We are too stretched to answer individual questions and suggestions (that is really what the "My M.E. Diary 2012 trial" is for) but we do welcome all constructive criticism at paqs@mecommunitytrust.org and on our Facebook page My M.E. Diary 2012 Trial - http://www.facebook.com/pages/My-ME-Diary-2012-Trial/186206768135247

    Best wishes
    John
    drjohngreensmith@mecommunitytrust.org
    M.E. Community Trust.org
     
  6. Marco

    Marco Grrrrrrr!

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    This is potentially a great idea but a little more assistance on the mechanics of joining up (e.g. how to create an alias - I know I'm a Luddite) mightn't go amiss.

    It would also be worthwhile to provide a little information on the format and contents of the spreadsheet. Patients have become all to used to researchers and physicians boiling the symptoms down to a few cardinal ones which for many definitions fail miserably to capture the true nature of the illness and the full range of symptoms. Although adding considerably to the analysis burden, some element of free response would be very useful.

    Caveats aside - the best of luck.
     

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