A PLACE FOR ME

“A Place for ME” is a registered charity (no 1120028) that aims to provide adapted housing and ME-trained carers to people with ME. We want to provide people with options, a solution in a crisis, and security for the future. We will improve the quality of life for people with ME, when, at the moment, problems with inappropriate housing and care cause suffering. A Place for ME will work to:

Research the housing needs and lifestyles of PwSME
Provide adapted Houses for groups of 4 PwSME to live
Provide live-in carers who are ME trained
Provide respite care suitable for PwSME.

Our Easter Campaign was an outstanding success and we far exceeded our original expectations. We were amazed and very grateful for the enthusiastic support of our colourful little chicks The knitting ladies’ needles were red-hot trying to keep up with demand and our hegglers (seller of poultry and eggs!) returned with empty baskets from the hairdressers, farmshops, the local college, churches, and family and friends. We sold a total of 867 chicks, raised £950 and distributed 500 leaflets. Thanks to the donations of materials, and the supply of the cream eggs at a very good price from a kind “chocolate supplier in the Midlands”, every penny has been banked!

We want to sell more than 1000 chicks in 2009. ..... Can you help us make them, please?

NEWS OF THE HOUSING PROJECT

The work on the project goes on behind the scenes - and we must be discreet about what is happening and make sure that we do not give false promises to you. But I can assure you that the housing people have a serious intent to make this happen once the research has given them facts and figures to take to the money people. The quotation in red shows that they have a generous sympathy for this cause. We also appreciate their willingness to make journeys and have meetings in a home because it allows our input.

We have been getting good feedback from the ME community. One thing has become very clear; that there is a complexity of housing and care needs made up from factors such as age, family circumstances or Multiple Chemical Sensitivites or Hyperacausis (sound sensitivity) or inappropriate care provisions.

At this early stage we cannot hope to meet them all but we dream about the time when we can. So this housing project is going to provide for those whose ME severity means that they need help with meals and some personal care and those who are highly dependent. It is this group whose needs are easiest to demonstrate, and are most likely to have the income to support a specialist service. It is these who, at the moment, are burdened and damaged because they have no alternatives but bad ones.

But this project will help a wider section not only through the respite care rooms, but because it will establish an official recognition that ME people need different types of housing and specialist care and it is this we can build on.

This is what the housing people are saying:

“I like many others thought that ME was something that came and went, something everyone recovered from. I have been incredibly moved by the information provided to me demonstrating an estimated 55000 people are suffering from severe symptoms from which they may not recover and just acutely debilitating these are.

As an individual and the Chief Executive a housing association providing care and support I am determined to raise the profile of this group of people in order to provide specialist housing support and care services.”

The research is now the fulcrum, that this first housing project, is now turning on. The more emphatic and detailed this is about the our need the faster the provision will develop.

This project is for you, help us to get it right. Help us to make it a reality

RESEARCH PLANNED BY THE UNIVERSITY OF EAST ANGLIA

if you are living in Norfolk or Suffolk and you are housebound or worse, please consider participating in this study. We are making it as ME- friendly as we can, and the outcome will have a direct and practical result for the ME Community

ME Research is notoriously difficult, and reaching the severely affected can be almost impossible, due to: their isolation which means they won't hear about the research and lack help to volunteer even; due to the exhaustion that participation guarantees and for the severe the cost can be impossibly high; and due to the mistrust of the science and research community based on past experience.

DONATIONS

We appreciate that many that there are requests for donations from many good causes; we can only say that we will make every penny donated to A PLACE FOR M.E. work very hard.

If you print and return this giftaid form with your gift we will be able to claim 28p for every £1 you donate

This website's focus is the accommodation and care issues of PwME. Homes+ and MESS uk are our proposed names for the 2 Charities we hope to establish. We are registered with Business Link, and have had a series of meetings with a Housing Association. We are currently planning a research study with the University of East Anglia. The results will form part of a submission to the Housing Corporation. Our goal is the first ME Households by 2010. We hope you will find our plans interesting and exciting, and look forward to hearing your views and ideas ( Guestbook )

Easter Fundraiser 08: £950 raised
"BIZZARE" He sold for £10 DO YOU KNIT OR SEW?	Our Easter Campaign was an outstanding success and we far exceeded our original expectations. We were amazed and very grateful for the enthusiastic support of our colourful little chicks The knitting ladies’ needles were red-hot trying to keep up with demand and our hegglers (seller of poultry and eggs!) returned with empty baskets from the hairdressers, farmshops, the local college, churches, and family and friends. We sold a total of 867 chicks, raised £950 and distributed 500 leaflets. Thanks to the donations of materials, and the supply of the cream eggs at a very good price from a kind “chocolate supplier in the Midlands”, every penny has been banked! We want to sell more than 1000 chicks in 2009. ..... Can you help us make them, please?
OUR FIRST PATRONS Sarah and Roger have been working hard giving presentations to the Support Groups in Norfolk and Suffolk and our project has been included in their magazines. We have had a great response and our mailing list has doubled. 2 names on our mailing list, that you may recognise, are The Countess of Mar and Dr Terry Mitchell, who is the chief consultant in ME/CFS services in East Anglia. We look forward to working them.
NEWS OF THE HOUSING PROJECT The work on the project goes on behind the scenes - and we must be discreet about what is happening and make sure that we do not give false promises to you. But I can assure you that the housing people have a serious intent to make this happen once the research has given them facts and figures to take to the money people. The quotation in red shows that they have a generous sympathy for this cause. We also appreciate their willingness to make journeys and have meetings in a home because it allows our input. We have been getting good feedback from the ME community. One thing has become very clear; that there is a complexity of housing and care needs made up from factors such as age, family circumstances or Multiple Chemical Sensitivites or Hyperacausis (sound sensitivity) or inappropriate care provisions. At this early stage we cannot hope to meet them all but we dream about the time when we can. So this housing project is going to provide for those whose ME severity means that they need help with meals and some personal care and those who are highly dependent. It is this group whose needs are easiest to demonstrate, and are most likely to have the income to support a specialist service. It is these who, at the moment, are burdened and damaged because they have no alternatives but bad ones. But this project will help a wider section not only through the respite care rooms, but because it will establish an official recognition that ME people need different types of housing and specialist care and it is this we can build on. This is what the housing people are saying: “I like many others thought that ME was something that came and went, something everyone recovered from. I have been incredibly moved by the information provided to me demonstrating an estimated 55000 people are suffering from severe symptoms from which they may not recover and just acutely debilitating these are. As an individual and the Chief Executive a housing association providing care and support I am determined to raise the profile of this group of people in order to provide specialist housing support and care services.” The research is now the fulcrum, that this first housing project, is now turning on. The more emphatic and detailed this is about the our need the faster the provision will develop. This project is for you, help us to get it right. Help us to make it a reality
RESEARCH PLANNED BY THE UNIVERSITY OF EAST ANGLIA if you are living in Norfolk or Suffolk and you are housebound or worse, please consider participating in this study. We are making it as ME- friendly as we can, and the outcome will have a direct and practical result for the ME Community
ANY VOLUNTEERS?	ME Research is notoriously difficult, and reaching the severely affected can be almost impossible, due to: their isolation which means they won't hear about the research and lack help to volunteer even; due to the exhaustion that participation guarantees and for the severe the cost can be impossibly high; and due to the mistrust of the science and research community based on past experience.
With the advice of Dr Pheby, and the research expertise from Dr Drachler and Dr Carvalho of UEA we are going to go where no-one has gone before	THE INVESTORS OF THOUSANDS OF POUNDS, NEED TO SEE FROM GOOD RESEARCH THAT OUR ME HOUSING & CARE ARE NEEDED
Dr Drachler asked what helped a person with ME get something completed? We decided: That the ME person should be able to start it immediately (because once it has gone in the pile it is lost!) That it is short, so managable That obstacles like needing a pen, or envelopes, are removed The appearance is ME Friendly Avoid using questions So we are going to use only 3 sets of 5 issues, with each set sent a month apart.	One can do research by giving lots of people a form of questions with tickbox answers, or one can raise issues, letting people talk to find identify common themes and language. While the tickboxes are good to find out if someone has a special diet or needs dark windows, they will not reflect the true picture with a question, such has "have you applied for social housing". The answer may be no - but the truth behind that "no" is that without eg sound-proofed properties, or perhaps a substitute for family care then there was no social housing that person could apply for. So we plan to use more the open method of gathering information, and hope to minimise the ME cost of communication by using mini-interviews, or the phone or internet, or providing a dictaphone to be used at user's own pace.