we can all find a way of moving things along

Discussion in 'Fibromyalgia Main Forum' started by tansy, May 2, 2003.

  1. tansy

    tansy New Member

    Here in the UK provision for CFS/FM is patchy and rarely good.

    Following a recent CMOs (Chief Medical Officer) report health authorities are supposed to address this but there is no real pressure for them to do so.

    The situation in Scotland is better, there is much more pressure to ensure they improve patients' access to appropiate medical services.

    Hospital wise I live in a "black" area for ME/CFS, and past bungles in my case make it even harder for me. Im trying to challenge this but their brains work quicker and more efficiently than mine.

    Well folks I think I've just discovered another means by which to challenge the local hospital trust.

    There's to be a neighbourhood forum meeting this month and a representative from the hospital trust will be attending to discuss health care issues.


    Know a meeting like this is too much for me and if I do try to get a question in I'll no doubt bungle it but "I know a man who can".

    I will appoint my representative to challenge this unsuspecting official appropriately, and give him a copy Canada's definition etc to hand over to her.

    Ironically the meeting takes place right after ME Awareness week - perfect timing.


    [This Message was Edited on 05/02/2003]
    [This Message was Edited on 05/02/2003]
    [This Message was Edited on 05/02/2003]
  2. tansy

    tansy New Member

    The big day in the US is May 12th

    In the UK we have ME Awareness Week from 12th - 18th May.

    If everyone just wrote one small letter, sent an e-mail, got everyone they knew invovled, we could make a difference.

    As Madwolf commented in one of his posts, if you can manage to write a message here then you can complain too.

    We need to educate people.

    Don't leave it to just a few people who are probably struggling by now under the strain, believe me I know I've been there!

    Remember that major changes in society and its attitudes came about because a few people felt there was an injustice. Others agreed, they worked together, changes were made.


    We are all more powerful than most of us realise.


  3. pinkquartz

    pinkquartz New Member

    i am replying so you will know i am not ignoring you and what you are saying.

    i have in the past produced a photographic exhibition on M.E./CFS and had it mentioned in local newspapers ans local BBC TV and BBC radio.

    i did receive feedback from people that my work had helped some people to understand for the first time more what its like to be ill with this DD.

    Right now i am drowning with current problems/challenges and also i am in a sad grieving space. so this time i have nothing over , it s not that i don't care and maybe if things go better for me soon i can dig out my photos and try something else....i'm better with pics than words i think.

    just so you know i do care and i don't sit back and leave it to everyone else but i am in a very tough place at this time


  4. tansy

    tansy New Member

    I had realised by your recent posts that you are having a really hard time at the moment. I do hope things start to feel less overwhelming soon.

    When I did a lot of regional campaigning in the past it was so much more difficult because others didn't realise that it really does need as many of us as possible to confirm what we are trying to get across.

    Then, as now, I tried to get people with these DDs to get others to act too, thus taking the pressure off those of us who really could not produce a sustained effort.

    I've always been severely effected so I do have a complete understanding of how easily we can feel as though we're drowning when too much is coming in and we don't feel we can cope.

    Take care

    Cheers, Tansy