VIDEO: The World of One Room, Severe ME

Discussion in 'Fibromyalgia Main Forum' started by ProHealth, Aug 27, 2012.

  1. ProHealth

    ProHealth Member

    The personal story of a young girl growing to a young woman suffering with the severest form of this debilitating neurological illness - Myalgic Encephalomyelitis (aka ME/CFS). A message of hope and a belief in recovery with a plea for us not to forget ME - it's time the world woke up!
  2. georgi

    georgi New Member

    What is the best way to access tthis story/video? The link is not clickable...
  3. ProHealth

    ProHealth Member

    copy the link and paste it into the address bar of your web browser.
  4. georgi

    georgi New Member

    Poor girl! So sad! I have days like that but I can at least move from room to room most of the time and do an errand every other day or so. My heart goes out to her... To all of us.
  5. MicheleK

    MicheleK Member

  6. simpsons

    simpsons Member

    way overdue for the ME community to step up to the mark and campaign for research into treating severe ME.

    How are we going to do it?

    fundraising for researcher
    applying pressure to gov's
    lobbying our charities, letter campaigns etc
    a man called paul anderson some time ago said our charities are leting us down and need to step up to the mark. he got a lot of abuse, but he was right
    perhaps a fundraising long running campaign for funds to treat the very severe.

    i'm in the UK and if the figures are correct of estimate of
    250 000k with ME then that makes 62 500k who are severely ill on the 25% estimate. with very often no medical service provision. in fact see charity tymes trust who are fighting at last count 80 cases of children the state want to take into care.

    I say estimate as we don't log cases in the uk so figures are based on the global estimates per population

    there are thousands 62 and a half thousands who are in this shocking condition of being severe with ME.

    almost no studies are being done on the severely ill.

    this is not acceptable

    in the uk drs and services for testing are not available at home. this leaves the patients in most need with out any service provision.

    then when these patients die and several v young ladies have died recently. there is often not a proper autopsy being done.

    charities like afme in the uk have betrayed us badly. they were right behind the pace trial that cost millions that could have been spent on researching/treating such seriously ill young ladies and guys such as we see in this video.

    Although afme have made their excuses it is a whitewash,
    who in their right mind would work with the wessely school and think that it would turn out any other way?

    we need to stand up to the so called action for me and not be fooled by the next campaign running at the moment. time for action. they are campaining for more cbt and get clinics.

    this means in reality that you will be seeing more and more of these cases as pwme get forced into damaging graded excercise and brain washing lightening process is next on the cards too. the nhs have funded lightening process on children.

    so its time for change and to speak up on behalf on young girls and boys who really need your support.

    this needs to be a world wide campain too

    the latest letter to the president thanking him for looking into nad following ME, seems just right to let them know and shout it from the roof tops that we need research and treatment for the severely ill

    it is our responsiblity to as those well enough to put together campaigns and letters to get this going

    we clearly can't rely on our charities. afme recently did the first funding in their history for research working with me research uk. this has never happened before despite the millions they have been given by patients

    we need to challenge our charities to take action for getting treatment to the severe. rememer this can be a progressive illness which means this could be you.

    so take action before its too late

    so remember when you are all fed up with newspapapers and cdc saying pace shows we all just need cbt and get. remember who backed it and supported it.

    in the uk when we protested they told us that afme backed it. the so called leading uk charity.

    me research uk are leading the way check out their website in research in the uk for ME. ~but still no to my understanding any research for treating severe pwme

    invest in me are trying hard to raise funds for a reserach and treatment centre. they need a million pounds, but are starting with two reseach projects for which they need 200k

    here are the links, you can donate to just one pound
    we suggested people
    might prefer to donate their £1 to the Summer Trivia Quiz .. closing
    date 28th Sept ..

    Here's the link to the One Day - One Pound event ..

    [This Message was Edited on 08/30/2012]