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International petition: Get Sweden to support international ME/CFS projects

Discussion in 'Petitions' started by Sasha, Aug 28, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Petition started by the husband of a Swedish PWME and featured on #MEAction.

    Just signed it. :)

    Edit: but please note the objections of some people from Sweden below. This is obviously a more complex area than I supposed when I provided this link (and signed the petition!).
     
    Last edited: Aug 28, 2015
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  2. Effi

    Effi Senior Member

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    me too :)

    PS: you can check a box so that your name is not visible online (in case that is what keeps some people from signing).
     
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  3. mango

    mango Senior Member

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    ehrrm... lovely idea, but i'm afraid that's not really how things work here in sweden... i know it's truly well-meant, but i can't help really wishing the efforts had been directed in a different, more thought through direction instead...

    meanwhile, the swedish patient organisation RME is in desperate need of man power. it would be fantastic if we could all align our efforts and work together on advocacy issues like these. RME is well established and solid, and does a fantastic job -- why not help out where there's already a momentum, and a good chance of actually making a real difference? we are stronger together.
     
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  4. Ninan

    Ninan Senior Member

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    Please don't sign this petition. It is not helping the ME/CFS cause in Sweden. Quite the opposite. This petition is written with no knowledge of this area of politics work in Sweden and will just make the ME/CFS community look unprofessional and unknowledgable. Besides, it spreads faulty information that there are no ME/CFS researchers in Sweden, which there are. Some of them, like Jonas Blomberg, are really successful.

    If people who want to make a change could please contact RME, the patient organisation, before doing things like this that would be great.
     
    Emma, Anne, ahmo and 3 others like this.
  5. Sasha

    Sasha Fine, thank you

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    Thanks, @mango and @Ninan - I've edited my first post to make sure that people read yours before they sign.

    I think it would be worth contacting #MEAction with your concerns (and the man who started the petition). He clearly cares about his wife with ME and is trying to help her and all of us. He may not be aware of RME and Jonas Blomberg and might be keen to learn about them and work towards something that you could all support.

    As a healthy person who cares and wants to make a huge difference - and has shown that he's willing to take the initiative - he could be a great asset.
     
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  6. mango

    mango Senior Member

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    thank you so much, @Sasha :)

    he's fully aware of RME, fully aware of our concerns, and he knows exactly where to find the relevant facts... he has chosen to go through with this (and other projects) regardless.

    just to be clear: i'm not representing RME, these are my personal opinions.
     
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  7. Sasha

    Sasha Fine, thank you

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    Ah well. :)

    Here's a link for RME, for anyone who would like it.
     
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  8. *GG*

    *GG* Senior Member

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    I don't see why this petition would hurt?

    Can someone expand upon why this would have a negative effect?!


    gg
     
  9. Effi

    Effi Senior Member

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    thanks @mango and @Ninan for the inside info. It's always hard to distinguish these things from an outside perspective.

    On the other hand, like @ggingues points out, I wonder if we shouldn't just be glad that people are organizing things, as opposed to just waiting for someone else to do it? Of course it would be better if everybody worked together towards one single goal, but that is hard to achieve. I can't help but think a lot of small achievements finally add up to a big achievement... I'd love to hear a bit more about the background of this story. :)
     
    alkt likes this.
  10. Emma

    Emma

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    I agree, this is sadly counterproductive. It lacks understanding of how the research funding system works and will signal to decision makers that the ME community doesn't care to gather knowledge before making demands - making the patient group easy to dismiss. This will mar future efforts to make progress politically in Sweden.

    That the Swedish Research Council, which works differently from NIH, would be assigned by the Swedish government to award money to a US research project, picked out by the petitioner, is wildly unfeasible. (The OMF project of course deserves all the support we can possibly give them, but this is not a feasible way to raise funds for it. Rather, it gives OMF and the project a bit of a bad reputation, since the action is so uninformed.)

    There are ways to work for increased biomedical funding for ME/CFS in Sweden, but we need to make requests that take into consideration how the system is designed. The Swedish patient association RME (www.rme.nu) is engaged in a dialogue with politicians with the aim of convincing them to earmark funds for biomedical ME research in Sweden, which is something that could be done. A better phrased and more accurate petition might have helped. Personal contacts with politicians with that request is a way to help too, but always with an eye to the reality of the funding system and the respective roles of the politicians and the research council.

    @JenB @searcher

    I think generally it's a great idea to vet actions with the ME community, for example via forums such as PR or via Facebook groups (in this case Swedish) - there is such huge knowledge out there! My experience is that after opening stuff up to discussion much is learned and the end product is usually really good - even without any formal help of associations, just via discussion in community groups. (Just look at what is achieved here at PR regarding info exchange!)
     
    Last edited: Aug 31, 2015
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