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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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I have this hope for making a healing center for ME/CFS

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
So far this feels like a wouldn't it be great idea that I have.

Wouldn't it be great if we had a retreat place where ME/CFS patients could go for a change of scenery?

Maybe someplace near a river where it is warm, but not too hot

We could have alternative healers, meditation classes, walking a little in nature mindfully, physical therapists that could teach gentle stretching, caregiver support information, teaching boundaries, and speaking up for what you need, like nonviolent communication... I have a million ideas! All the classes would need to be very short and all just go to a class if you are interested.
Classes on different nutrition, supplementing, acupuncture, all of the ways that we are seeing results in the alternative. Art therapy! Strategies on boredom! Again at your own pace.

There would have to be beds and recliners everywhere, and private rooms with proper window coverings and soft cotton... We could serve meals in the room, or have a simple coffee shop with meals if people want to mingle some.

This is just a pipe dream, but I like to put my dreams out there.. Sometimes they manifest!

Yes, we need funding. Most of us (including me) could not afford to do it. Maybe if the scientists wanted to study us there we could be easily accessible for testing. Think of the information they could gather on our illness!

Thanks for reading, Namaste
 
Messages
89
Location
Ontario, Canada
This is just a pipe dream, but I like to put my dreams out there.. Sometimes they manifest!

Yes, we need funding. Most of us (including me) could not afford to do it. Maybe if the scientists wanted to study us there we could be easily accessible for testing. Think of the information they could gather on our illness!

Thanks for reading, Namaste

pure inspired brilliance!
from your lips to god's ear :bouquet: :balanced:
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
Thank you so much @Raven Mom . If you have some dreams to add to this dream... Add away!
I would really like hearing other ideas. I can lay here and put the retreat/study center together in my heart and mind.

I posted this in the spirituality forum to give people room to dream!

I would love to do @Wayne 's OM meditation in the mornings with others! So powerful in a group!
 

keenly

Senior Member
Messages
814
Location
UK
So far this feels like a wouldn't it be great idea that I have.

Wouldn't it be great if we had a retreat place where ME/CFS patients could go for a change of scenery?

Maybe someplace near a river where it is warm, but not too hot

We could have alternative healers, meditation classes, walking a little in nature mindfully, physical therapists that could teach gentle stretching, caregiver support information, teaching boundaries, and speaking up for what you need, like nonviolent communication... I have a million ideas! All the classes would need to be very short and all just go to a class if you are interested.
Classes on different nutrition, supplementing, acupuncture, all of the ways that we are seeing results in the alternative. Art therapy! Strategies on boredom! Again at your own pace.

There would have to be beds and recliners everywhere, and private rooms with proper window coverings and soft cotton... We could serve meals in the room, or have a simple coffee shop with meals if people want to mingle some.

This is just a pipe dream, but I like to put my dreams out there.. Sometimes they manifest!

Yes, we need funding. Most of us (including me) could not afford to do it. Maybe if the scientists wanted to study us there we could be easily accessible for testing. Think of the information they could gather on our illness!

Thanks for reading, Namaste


Yes indeed. DREAM IT INTO REALITY. GOD BLESS.
 

Rebeccare

Moose Enthusiast
Messages
9,066
Location
Massachusetts
Didn't the word 'sanitarium' mean a place where people who were ill could go to convalesce and just relax in nature? Or was that sanitorium??

I'd like to schedule my visit now, please...

By the way, I've seen you mention the OM meditation a few times. Could you please point me in its direction??
 
Messages
24
Love this! I've actually tried looking on line for it in the UK (and obviously found nothing). Also looked for a holiday rental suitable ie the promise of no perfumes, air purifier, flexible or late check out times, a welcome basket that my mum can actually use that sort of thing.

My dream is not as adventurous... I want to do a meals on wheels service for ME/MAST CELL/FODmap. As the loved one of a patient I worry a lot that other CFers don't have someone to cook for them or relatives that understand the diet needs... it bugs me genuinely!
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
@Ineedausername , I actually worry about caregivers also! It has been a real learning experience at my house! I would love the Centre to include the loved ones and have education for them to do self care and I think the communication part is so vital.

Some are taking care of people who have no speech! Imagine!

As long as this is based on love and learning to live a new normal it excites me so much!
 

toyfoof

Senior Member
Messages
1,173
Location
Sedona, AZ
I love this! Healthy meals with classes on how to create simple, basic, healthy foods without too much energy.

A place for our pets to rest with us, or hike around with our caregivers or those of us well enough for some walking.

Photography, painting, and drawing supplies. Coloring books.

Eye masks and ear plugs.
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
If some of the scientists would study us in that setting we could just go get an MRI or they could send phlebotomists to our rooms and we would not have to travel for blood work then suffer as much! Just think!

Just dreaming of this makes me happy!

There are some beautiful places in Arkansas, and the all the southern mountain ranges Tennessee, Even parts of Georgia, that are warm, and have airports that are easy to travel through. Much cheaper land than the Ozarks and cooler than Florida. I am thinking low cost land and easy less stress travel.

I am a southern girl and we don't have to stop for winter. Just miserable in July and August.
 
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