1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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UK Parliment ME/CFS e-petitions

Discussion in 'Petitions' started by Holmsey, Oct 27, 2011.

  1. Holmsey

    Holmsey Senior Member

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    Scotland, UK
    http://epetitions.direct.gov.uk/petitions/491
    http://epetitions.direct.gov.uk/petitions/14242

    Appologies if these are covered else where or if the site has somewhere specific for them, if not there's an idea. Each petition needs 100,000 signatories in order to be accepted for debate, and I'm guessing that's UK residents although you're asked if you're a UK national or not so feel free in either case if you're supportive.

    Please forward to family and friends if you think they'll sign up.

    Thanks,
  2. snowathlete

    snowathlete

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    UK
    and here are the other ones relating to ME/CFS:

    http://epetitions.direct.gov.uk/petitions/20035
    http://epetitions.direct.gov.uk/petitions/17815

    Remember that you need to click on each verification email in order for your signature to count! So check your email after you sign one of these and make sure you click each link if you sign more than one.

    The most helpful thing you can do is facebook and twitter about these, which you do by clicking the relevant buttons on the page of each petition.

    Thanks!
    Joel
  3. Esther12

    Esther12 Senior Member

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    Thanks - I'll go through these in a bit.
  4. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    As said before, while these are of course, good/easy ways to show public concern, government doesn't really take huge note of them
    instead, sending letters to your own MP, or, the Secretary of State for Health (currently held by Andrew Langsley), will get more attention :)
    self likes this.
  5. Enid

    Enid Senior Member

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    All done Holmsey - and will pass around locally here.
  6. allyb

    allyb Senior Member

    Thanks for posting these Holmsey and Snowathlete, I have passed them on and I am going to email them to my MP so that hopefully he will be present when these debates take place with something positive to input.
    He has been really helpful to me and taken an interested in ME/CFS and has offered to raise any question in parliament that I want to ask.
    Through the Invest in ME website, I watched MP Annette Brooks (23 February 2010) raise the subject of Myalgic Encephalmyelitis in parliament. She spoke at an adjournment debate these take place at the end of the day when the speaker has declared the house adjourned for the day. (All the MPs run off home) So what happens is the MP is speaking to a virtually empty room and then the response is given by a primed government minister.
    MP Ann brooks speech was informative and well presented; it lasted over 30mins. She had been given her information from a supporter of IiME. It seemed an absolute travesty to me that there was hardly a sole in the House of Commons to hear it let alone debate it.
    Does anyone know what kind of debate these petitions will be presented at?
    SilverbladeTE has a good point (sadly) so maybe if people take the time to contact their own MPs and ask them if they will be present at the debate and if they will report back from the debate? It would be a way of involving as many as we can. With the power of facebook etc there are so many internet petitions these days.
    Its seems like the eternal treadmill but we can only work with what we have and at the moment we have the gift of the Rituximab trial. We need to surf this wave and encourage the MPs to take note in this RARE positive climate.
  7. Bob

    Bob

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    England, UK
    If 100,000 signatures are collected, then a parliamentary committee is obliged to consider whether or not to have the debate described on the petition.
    I don't know what criteria they use to decide whether the debate should go ahead.
    If it does go ahead, then it is a proper debate - it's not an adjournment debate or an "early day motion".
    The recent parliamentary debate about having a referendum about being in the EU, was prompted by getting more than 100,000 signatures on one of these petitions.
    Obviously they were more successful at collecting signatures than the ME community!
  8. snowathlete

    snowathlete

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    I honestly think we are our own worst enemies sometimes!
    As BOB mentions, get enough votes and they are obliged to consider it properly for a full debate. Obviously when you get close to the 100,000 votes, we ensure that the ME charities, and us patients all inform our MPs and apply pressure so that it does then get the debate!

    The ones that do well are the ones that people take seriously and promote. I started one of the above petitions 4 days ago and already got more votes than all but one of the other petitions on ME/CFS have in months. The one that has more votes, is also very good, but only has 6 months left to run. I presume it was put up six months ago...
    So its all about how it is promoted and how seriously WE take it.

    I have contacted all the ME/CFS charities i know of in the UK and asked them to help by putting on their websites and magazines. One has already put it up on their site!

    Once you reach 20-30k votes you start appearing on the first page of petitions because they are sorted by the number of votes. So its really about getting to that target and it then gets easier.

    We have 361 days left. SO I URGE YOU TO GET EVERYONE YOU KNOW TO SIGN IT. IT WILL MAKE A DIFFERENCE IF YOU DO. IF YOU DONT....WELL WE DESERVE WHAT WE GET!!!!!!!!!

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