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Article: The NIH on ME/CFS in 2012 Pt III: Neglect Imperils ME/CFS Research

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 8, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Snow Leopard

    Snow Leopard Senior Member

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    Australia
    Excellent article. Thanks Cort.
     
  3. Cort

    Cort Phoenix Rising Founder

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    Thanks. I hope people can get engaged in this topic. Getting more research funding is THE most important goal of the ME/CFS Community. Getting another RFA is, I believe, the key to do that. With the production of the State of the Knowledge Workshop the time is ripe for one. Getting one would make a big difference for the ME/CFS research.
     
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  4. Anne

    Anne Senior Member

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    I agree. Thanks, Cort.
     
  5. Cort

    Cort Phoenix Rising Founder

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    Its a key problem and a key opportunity - based on the hits to this article (the lowest I can remember for a front page article) - its also not something people in this site are very interested in. You can't say there's not an opportunity here - there is - getting an RFA would be a huge opportunity for ME/CFS research but its going to take some work to get it realized. If politicians and bureacrats are not going to change the status quo - and absent another hit like XRmV - that seems very unlikely - then its up to the patients. I guess we'll just cross our fingers and hope that they do the right thing :D
     
  6. Firestormm

    Firestormm Guest

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    I think another 'issue' is the 'simple' fact that governments are becoming reliant on privately funded research or jointly funded research.

    In a sense we have made a rod for our own backs especially in the current economic climate. When you consider that more research comes from charity/private/philanthropic sources than anywhere; it is no biggy for governments to say; 'Hey guys they're doing well enough on their own. They know what they want. They're the 'experts'. So let's save some bucks!'

    Sad state of affairs but true. Government in my country and 'localising' and seeking to shift the burden of responsibility onto the 'third sector' i.e. the charity sector. Of course our taxes don't go down but we are being asked to increasingly fund more private studies/treatments/care etc. from our 'own pockets'.

    Bit of a dichotomy - to state the bleedin' obvious - especially when disabled folk are on state support. Although it is also ironic in a way that those same folk are dipping into their state support to fund the myriad of charity organisations.

    I don't personally believe in charities or the third sector beyond them being noble causes. It simply is not right that government in the UK (and the US as well as elsewhere) are having their cake, eating it, and licking their lips; while we continue to fund private/charity enterprises and risk wasting our money.

    Too many charities and not enough cohesive effort. And if I am honest, not enough regulation or responsibility. Donate to a 'good cause' but no accounting for what they do with your 'hard earned' cash.

    Apologies. It bugs me is all. The government are getting off the hook and the third sector are being deluded by promises of it all being in our best interest. That we somehow will have more control and not less and that it will be far better than before.

    In the UK with this new Health and Social Care bill, the mantra of 'no decision about me without me' is not worth time it takes to spit. Which is why I was so pleased with the MRC being able to put what might seem a paltry sum into CFS/ME research. It kind of bucked the trend. Am not convinced though that this won't be a one-off....which is why peeps ought to perhaps get behind it...

    Anyways. Just saying :cool:
     
  7. Anne

    Anne Senior Member

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    What can we do? How can we push this?
     

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