Housing project for severely ME/CFS sufferers in Neunkirchen-Seelscheid, Germany: Interested parties wanted!

Discussion in 'General ME/CFS news' started by John Mac, Apr 14, 2025 at 4:23 PM.

  1. John Mac

    John Mac Senior Member (Voting Rights)

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    A housing project specifically for people with severe ME/CFS, including 24-hour assistance, is being planned in Neunkirchen-Seelscheid . A developer, in collaboration with Sozialhummel, plans to build barrier-free apartments in 53819 Neunkirchen-Seelscheid that are optimally tailored to the needs of people with severe ME/CFS.

    Planned framework conditions of the residential project:

    • Soundproofing: The apartments should be specially soundproofed.
    • Ventilation: High-quality ventilation systems are provided.
    • Blackout: The windows should be completely blackout and soundproof.
    • Indoor climate: Bedrooms are planned on the north side to ensure pleasant temperatures.
    • Accessibility: The entire building should be constructed in a barrier-free manner.
    • Social housing: The rent will be based on the social welfare regulations for housing costs (KdU).
    With this project, we aim to provide support, especially to those who are severely affected – ideally also to those currently in nursing homes. To realize this project, we need at least five interested parties who meet the following requirements:

    • Entitlement to integration assistance with 24-hour support (Sozialhummel also helps with the application process)
    • Income/assets in accordance with social welfare law requirements
    The apartments are expected to be completed in summer 2026. Neunkirchen-Seelscheid is located in the eastern Rhein-Sieg district in a quiet, rural setting, yet offers good infrastructure with nearby shopping facilities.

    We would now like to establish a waiting list for interested parties . If you or someone you know who is severely affected by ME/CFS is interested in this housing project, we look forward to hearing from you.

    Contact:
    If you are interested or have further questions, please contact:
    Silke Horn, Managing Director of Sozialhummel, silke.horn@sozialhummel.de

    https://sozialhummel.de/wohnprojekt...neunkirchen-seelscheid-interessenten-gesucht/
     
  2. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Is this a first of its kind?
     
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  3. Yann04

    Yann04 Senior Member (Voting Rights)

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    99% sure it is. And reading it nearly made me cry. This is exactly what is needed.

    And if this pans out well, it is definitive proof that governments could properly provide for severe people if they wanted too.

    Important to note though it’s a charity project, not government.
    But I could definitely see something like this being done by governments in the future. Especially somewhere like vienna which is probably the most ME-aware city on earth thanks to political lobbying by the Ströck family, and also coincidentally is the city with the highest percentage of social housing in western-central europe. I think somewhere between a third and half of housing units are social housing.
     
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  4. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Very good point!

    And the buildings could be used for all kinds of severely disabled patients due to their universal design, which means that they could easily be repurposed if that is a potential barrier for building them.
     
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  5. EndME

    EndME Senior Member (Voting Rights)

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    Apart from the other obvious aspects that could make this a great project, this could make it very feasible to include a group of severe ME/CFS patients in trials happening around Cologne as a researcher would presumably only have to travel to one location to get what would be required of all participating patients.

    There's probably some fairly complicated legal aspects one has to consider (what happens if a patient recovers etc), but I'm sure that can be dealt with.
     
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  6. Yann04

    Yann04 Senior Member (Voting Rights)

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    Yes. And the location seems rather appropriate in that it’s in a quaint commuter village near Bonn, but it’s fairly quick drive to medical services and hospitals on the outskirts. (Like Siegburg)
     
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  7. Utsikt

    Utsikt Senior Member (Voting Rights)

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  8. Kitty

    Kitty Senior Member (Voting Rights)

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    It sounds amazing!

    Ironically, building this kind of accommodation doesn't necessarily need to be highly technical. I've accompanied a friend on visits to an elderly aunt, and she lives in a 40-year-old social housing bungalow that would probably suit the purpose.

    It's like mine, but on her development they're fully detached instead of semi-detached, so there's no possibility of neighbour noise. They're accessible, have two bedrooms and a wet room, a garden that the council maintains, and a warden service where you can choose the amount of contact you have and the means of doing it.

    It's also really quiet. The houses are well insulated against extremes of temperature, which also means well insulated against noise. They're built on cul-de-sacs, so there's no passing traffic or pedestrians.

    It's possible existing homes like these would only need triple glazing and a blackout blind system added, which in the grand scheme of things isn't an expensive adaptation. Many local authorities will already have architectural plans, as once they develop good designs that tenants like, they tend to re-use them.
     
    Last edited: Apr 14, 2025 at 5:55 PM
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  9. Yann04

    Yann04 Senior Member (Voting Rights)

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  10. Utsikt

    Utsikt Senior Member (Voting Rights)

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    I’ve heard that patients that have been there say that they are allowed to decide on their own what they want to do in terms of treatments, if any. But the doc, Storla, is known for providing prescription for the usual suspects of experimental treatments if you want it.
     
    Last edited: Apr 14, 2025 at 6:11 PM
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  11. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Does anyone know if this project will include medical assistance? Or is that something that’s already provided by the public sector?
     
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  12. Yann04

    Yann04 Senior Member (Voting Rights)

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    As far as I understand. They are only looking for patients whose disability assessment already means the government provides them 24 hr care.

    So all the charity would really be doing is building the place and sort of managing it. But they would integrate the already existing german social support.
     
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  13. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Ah, that’s a pragmatic solution on their end.
     
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  14. hotblack

    hotblack Senior Member (Voting Rights)

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    It does sound great, both what they’re doing here and what you describe Kitty. Adding an air to air heat pump and some solar panels would be a great way to ensure heat in the winter and cooling in the summer too.

    I’ve often dreamt of a bungalow like that. Somewhere I could even get outside of when having a better spell. A lot better than being stuck in an attic room for years!
     
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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    This seems good!
    Absolutely. It could be a model. An actual patient-centered process.
     
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  16. NelliePledge

    NelliePledge Moderator Staff Member

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    Impressed they are actually doing this and it should be done next year
     
  17. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Looks like a worthwhile project. Suspect there is a great need for this. Interested to see how this will develop.
     
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