Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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A Town Designed for ME/CFS Would Have...

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Apr 18, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

    Southern California
    • No stairs
    • Chaise lounges at every supermarket, bank, and doctor's office
    • Autonomous cars
    • Ample parking
    • A local compounding pharmacy
    • A local ME/CFS doctor with Ampligen and Rituximab
    • Very strict mold laws
    • All day noise ordinance
    • Speed limit of 15 mph
    • IV saline / oxygen bars
    • 3 day workweek
  2. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    laws against toxic chemicals, banned
  3. CCC

    CCC Senior Member

    this isn't as much of a dream as you would think.

    Planning for older people (esp. with dementia) has becoming a thing in urban planning world - open spaces, no clutter, places for rest, disability access, community spaces for low-threat socialisation (ie no overwhelming noise, clutter etc).

    But to Tania's list, I would add:
    • solar passive, accessible housing (and all buildings) - reduces heating/cooling costs and can be lived in/used by everyone (also reduces mold, gas fumes etc)
    • community/farmer markets for grocer and butcher
    • excellent public transport network - buses, taxis, autonomous cars
    • flat
    • accessible and very wide paths for motorised wheelchairs.
    Snowdrop, Valentijn, xrayspex and 4 others like this.
  4. *GG*

    *GG* senior member

    Concord, NH
    Doubt I would ever take Ampligen or Rituximab. All day noise ordinance? Yuck, I like to rock it out when my ears are not sensitive to sound! I do more 15 mph on my bicycle :(

    Fuck work! I was scheduled for a 4 day workweek and could still not swing that!

    Chaise lounges sound good for getting sun and chilling out;)

    HowToEscape? and belize44 like this.
  5. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    That doctor also needs to do home vists as the dr is no good for many of us if he cant. That's situation Im stuck in, I had "okay" I guess (they wouldnt give Ampligen or Rituximab thou) CFS doctors but I cant get to see them any more.

    Maybe one day someone would set up some kind of villiage for those like us, just like the old folks can live in villages, get meals provide, have a laundry service etc etc if needed. Id be so much better if I could live in something like that
  6. Eian Mcneely

    Eian Mcneely

    Unfortunately such a town seize to exist, but i dream of a day when this will become reality
    belize44 likes this.
  7. antherder

    antherder Senior Member

    A vet that does house calls and who also offers a pick up service for when animals need in clinic care.

    An animal minder service that could walk people's dogs for them, or just feed cats and dogs and other animal companions when their humans are too sick to do this themselves.

    An animal visit service, where people who aren't able to have any animals living with them can get cuddles with dogs and cats when needed. :)

    As long as the cats and dogs were okay with that, obviously. I'm aware that some cats don't travel well...and don't like to be cuddled, except when it suits them...that too...:cat:
    belize44, Chelby and ladycatlover like this.
  8. arewenearlythereyet

    arewenearlythereyet Senior Member

    I would add well "maintained" wide paths ....lot of pot holes where I am! The council seem to spend all their money on the road resurfacing and not bother with the pavements?

    While I'm doing a "victor meldrew". I would also like to ban bicycles and mobility scooters from paths where people walk......and have designated tracks for these. This would allow people who want to walk to be able to go at their own pace without risk of stumbling out of the way of two abreast bikes racing home from work or even worse being mowed down or (this is the worst) being tooted at by inconsiderate rushing scooter goers who are driving on pavements in "road mode" weaving in and out of pedestrians as if they own the bloody place. If I had a stick I would wave it cursing at those guys.
    belize44 and ladycatlover like this.
  9. mirshine

    mirshine Senior Member

    Dublin, Ireland
    A live in care centre for those who struggle to be independent. Or assisted living housing but with all the above specifications. With a quiet little coffee shop for when we feel able to talk or mingle.
    And a beautiful garden. Near the sea. Ahem, may be running away with myself!
  10. wastwater

    wastwater Senior Member

    Electric powered vehicles and flying vehicles
  11. ladycatlover

    ladycatlover Senior Member

    Liverpool, UK
    Mountain views.
    Verandas on homes - so you could sit out on a warm day even when its raining. Or in shade if it's sunny and too hot.
    Somebody to fill up the bird feeders.
    Izola, ballard, Jennifer J and 3 others like this.
  12. arewenearlythereyet

    arewenearlythereyet Senior Member

    Thought of another one. Houses designed for home delivery. Perhaps instead of a letter box, have a wider slot in the side of the house with a conveyor belt to take the food or whatever directly to a convenient place for unloading inside the home, You could put the fridge\freezer at the end of the run?
  13. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    Anti psycho-babbler defences


    Guest facilities for the Dark Brotherhood of the Evil Weasel


    Resident's amusement park and RenFair, complete with "Bullshit-Be-Gone!" attraction!

    Mesurfer, Ritto, mirshine and 10 others like this.
  14. Marc_NL

    Marc_NL Senior Member

    The town would be designed like they designed "The Matrix".

    Everyone would be able to do whatever they wanted, run some marathons for example :)
    mirshine and belize44 like this.
  15. Chelby


    Located in a low hayfever area with no extreme weather

    Smart homes & buildings - remotely controlled lighting, doors, blinds, security etc.

    Fluorescent lighting banned

    Quackery punishable by banishment
  16. PatJ

    PatJ Forum Support Assistant

    Our land would be paid for by governments, insurance companies, toxic chemical manufacturers, corrupt researchers, and anyone who has ever said "it's psychosomatic," "you need to push through the fatigue", or "you just think you're tired."

    Each entrance to our land has a sign to set the mood for visitors or new residents. "Welcome to our world, where we focus on us, not ME."

    Citizens have their preferred landscapes so the city is located at a balance point of mountain, prairie, and sea. Every room has an excellent view but also features blackout blinds for sleeping or to aid people with light sensitivities.

    Every residence is customized for, and by, the occupants. Flexible design accommodates changing needs without having to change residence. Professional care, physical support, and counseling is available for all who need it.

    A pristine palace provides a safe space for those with chemical sensitivities. Every surface is easily cleaned but warm and comforting. This is a world within our world. Airlocks provide access, with showers, changing areas, and sanitized clothing for visitors. Fragrances and anything of an industrial chemical nature is treated as a bio-hazard.

    Spouses, willing family members, and true friends work on site in their chosen occupations. Due to generous funding all occupations are part time so loved-ones can spend time with each other, develop and grow together, and live to work instead of work to live.

    Daily excursions to various areas are provided for those who are capable of traveling. These trips may be as simple as being transported to a quiet field to spend the day alone watching the wind play in the grass, or something more active like visiting an arts festival on the sea-shore with fellow citizens.

    Many interests are accommodated. Theatre performances, movies, night-clubs (for the moderately ill), cafés, spaces for simple or complex gatherings, skill development, libraries both physical and digital, telescopes for earth and sky-gazing.

    Quiet spaces abound. Gardens with alcoves and sheltered places for solitary contemplation; winding paths with frequent resting areas integrated into the landscape; lakes, pools, and streams.

    Canals allow the bed-bound to float around the city and visit their friends, see the sky, and enjoy fresh air. For the motion sensitive, motorized beds creep slowly along, allowing the occupants to travel without distress.

    Medical support is entirely on-site. There is no struggling to see a doctor. All medical care is provided by specially trained doctors that are not only experts in our conditions but are also selected for high levels of empathy and compassion.

    A researcher and librarian regularly talks to people and catalogs what treatments have worked for them, and what hasn't. This information is compiled, regularly updated and made available to residents on an ongoing basis. Data-mining and statistical analysis is used to look for patterns in responses. Research projects are developed with patient input and participation.

    All employees have been carefully filtered according to empathy testing. Anyone who doesn't have a high EQ would have to avoid contact with the community at large until they've developed a proper sense of empathy and compassion. Empathy training is available for all people who want to grow and become better, more emotionally mature people.

    This land is our land. A place for those who are just starting with this illness, and for the worn and weary who have suffered long and hard. A place to help us cope and be stronger than the sum of our parts until a new day dawns and a cure is found.
    Izola, ballard, mirshine and 5 others like this.
  17. lnester7

    lnester7 Seven

    Transportation to all kids activities.
    Easy access organic food so you don't have to hunt down good food.
    Vit B12 shots or any needed shots.
    No allergens or perfumes.
    mirshine and ladycatlover like this.
  18. ladycatlover

    ladycatlover Senior Member

    Liverpool, UK
    Thank you @PatJ, your post made me cry. In a nice way though - it's good to day dream. Here's my ocean and mountain view...

    [​IMG]IMG_8357 by Maggie, on Flickr

    Edit: That's Snowdon across the sea. View from our static caravan.
  19. xrayspex

    xrayspex Senior Member

    Hey CCC I was trying to research this a few years back but got sidetracked.....have you noted any desirable,affordable retirement centers or towns/cities with areas of intentional communities like this?
    Mesurfer and ladycatlover like this.
  20. edawg81

    edawg81 Senior Member

    Upstate, NY
    GET drs be gone, machine/attraction!

    Also could we have motorized beds, so we could drive around while horizontal :)

    In all reality I'm hoping one day for remission instead of a town to accommodate an illness I'd rather not have. But its a nice distraction at the moment. :thumbsup:

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