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The EU wants to know what research objectives are important

Discussion in 'General Advocacy Discussions' started by strategist, Jul 8, 2019.

  1. strategist

    strategist Senior Member (Voting Rights)

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    I think Science For ME should submit a response. Patients with ME and various other illnesses have been abandoned and a good way to change this is to invest in research to identify biomarkers and the underlying disease process.

    https://ec.europa.eu/eusurvey/runner/HorizonEurope_Codesign_2021-2024

    I will write down more of my thoughts tomorrow.
     
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    There may be value in arguing for medical needs that have high demand and near zero supply, without specifically making it about us.

    It's weird but medical priorities are clearly built on what researchers find interesting and pay little to no attention to need. There is a lot of unmet demand, which will remain unmet until efforts are made to actually meet them. There is little to no interest from the medical community to even pay attention to unmet demand, since for the most they are not even aware that those needs exist at all. Despite the fact that it amounts to a terrifyingly large population, of which we are a part of.

    Supply and demand, meeting halfway. Such a crazy objective it might just work.

    Also equally crazy: patient engagement. I know it exists as fluff feel-good pandering but it would be truly a novel idea to actually go ahead and do it. It would be a groundbreaking change in the culture of medicine but since medicine already pretends to buy into it, let's risk it all and take the extra step of actually putting it into practice.

    Because as bad as our own situation is, it's part of a broader system-wide failure that is itself acting as the biggest obstacle to any positive change. We are achieving little because we are seen as the enemy and meet obstruction and opposition, instead of cooperation.

    Medicine cooperating with sick people at solving disease and suffering, imagine that. Crazy, I know. But it just might work. Actually it inevitably will, it's just a matter of how long it takes to actually give it a first try.
     
  3. strategist

    strategist Senior Member (Voting Rights)

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    It is not so easy to effectively communicate the situation we're in with less than 5000 words.

    You're touching an important angle here.

    The way things are currently being done does not work for us patients. What is required is a novel way to respond to problems like ME rather than building psychosomatic barriers around patients that create a sort of ghetto. I'm thinking about a research fund specifically for neglected and underfunded diseases. Access to these funds should only occur when specific requirements are met that ensure the funding doesn't result in more of the same.
     
    Last edited: Jul 8, 2019

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