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Letter for Christmas with M.E.

Discussion in 'Action Alerts and Advocacy' started by drjohn, Nov 8, 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 RE-TWEET ON TWITTER.

    As I write, six weeks before Christmas, I have been running a temperature for more than two weeks, am in bed or up, not washed or dressed, only for essentials; the curtains are drawn against daylight; I feel sickly and nauseous; I cannot concentrate for any time, nor hold my head up to make conversation. My caring, supportive, doctor has nothing to offer but genuine sympathy and advice of taking paracetamol, water and rest. For those who say, when they see a person who suffers from M.E. (Myalgic Encephalomyelitis) in the street, "You always seem all right when I see you," this is what we are like, when unable to go out and when you don't see us. I haven't been across the doors for 25 consecutive days this month for anyone to see.

    Christmas, love it or hate it, is coming. It is a demanding time for those with an abundance of health and wealth. It is a testing time for all individuals and relationships, which is exacerbated to intolerable when one is constantly ill. My experience, over 23 years, is quite typical of hundreds of thousands in the UK, millions around the world. There are tens of thousands, even more severely affected, who spend 365 days a year in an 8' x 10' space, bed bound, unable to speak, tube-fed, blindfold, fans running, all possessions contained floor to ceiling, who go nowhere unless on a stretcher. The majority are not entitled to care, fuel allowance, or free prescriptions, as most people incorrectly assume and, therefore, are left alone, unable to answer a door, raise a call for help and, mostly, go without.

    This appeal for understanding is notintended for those affected by M.E., who are able to enjoy Christmas, or are prepared to suffer the consequences afterwards but for those who dread it. If you love or care for someone with M.E., think about it, put yourself in their position: Would you welcome guests, in a party mood, if you were feeling as I have described; wish them to enter your cold, house, neglected due to inability; receive cards and gifts you have not the energy to return and cannot afford without going further into debt? Would you want to receive an invitation to a party of strangers, dependent on someone for transport home; swap your own bed for a lilo on the floor of a spare room, next to a loud gathering you cannot join?

    Here is some advice, (1) for anyone who loves or cares for someone with ME: ask them what would be best for them and then, unconditionally, unquestioningly, do as they request; (2) for any M.E. sufferer, unable to cope with Christmas: tell your relatives and friends the contents of, or show them, this letter; (3) for any M.E. sufferer unable to deal with, even bullied, by someone who doesn't understand: Contact us and we will speak to them on your behalf.

    We shall hear of more casualties in the New Year, from those who did not heed this appeal and who will not be there 24 or 48 hours later to witness the exhaustion, or the months of M.E. relapse, that ensue. I don't know a single person affected by this awful illness who has not additionally been touched by social isolation, fragmented relationships, a broken heart or spirit and even death. Please take these tips for a happier Christmas for all.

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

    I am sending this letter for publication to my local newspaper and some other selected places. If you would like it to appear in your local area newspaper, wherever you live in the world, send an e-mail to drjohngreensmith@mecommunitytrust. org with "My local newspaper" in the subject line. If you don't know, or can't find out the e-mail address for us to send it to (usually something like letters(at), or editor (at), or firstname.secondname (at) nameof newspaper.com), leave the message area blank and we'll reply with the instructions how best to find it. It would be great if as many people as can manage also write, separately, and/or in response to the Christmas theme. You may also forward and re-post it wherever you choose, such as online groups, forums, Facebook, Twitter and use in newsletters for maximum impact of message.
     
  2. WillowTree

    WillowTree ME/CFS is NOT fatigue!

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    Illinois
    Thanks, Dr. John, for your beautifully written letter. I am sharing it with my family. I hope you begin to feel better seen.
    Blessings.
     

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