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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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The Inclusion Project for Chronic Illness

Jenny TipsforME

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Yes I am. It is very early in the project. We are building a movement to give people with (energy limiting) chronic illness disability a voice. It is a research project, but it is partly research about how to grow this type of movement.

Depending on what participants want to do, we'll likely cover concerns such as MUS which cut across quite a few conditions and are social/political. It isn't testing treatments (not our area).

We're seeking to answer these questions:

"How does society make life harder for people with chronic illness than it need be?

and

What are our priorities for changing the way society responds to chronic illness?

The Chronic Illness Inclusion Project runs until December 2019 and is part of the DRILL programme, funded by Big Lottery Fund. Read our full project outline."
 
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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Latest email from the Project
We have a great new blog post by Sarah Campbell to share with you. Sarah writes about her experience of having both chronic illness and physical impairment and compares the responses she’s had to each.

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Accessing support: a system geared towards physical impairment
"People with chronic illnesses have not yet come together and campaigned for their rights in the same way other groups have in the past".
Read more
Our news
We are working towards setting up an online forum for people who are interested in having in-depth discussions about the changes we want to see for people with chronic illness. It will take time to get the nuts and bolts in place and get ethical approval for this lottery-funded research. Please bear with us!

Help us to grow
It goes without saying that setting up a project like this and being ill ourselves is challenging. We have no office and no regular working hours, just snatches of time when our brains are clear and the wonders of digital communication to connect us.

There is no PR team to spread the word while we get on with being researchers. It's just the two of us! So every tweet or retweet, every Facebook like and share you can give us helps us enormously. We may be looking at other ways people can get involved. If you have any ideas, let us know.

Thank you for joining us,

Catherine Hale
Click to expand...
A click on the link in the quote above will take you to the blog, or the main page for the website is http://inclusionproject.org.uk/
 
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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Latest blog update from @Jenny TipsforME
Inclusion would be NICE
Posted on July 29, 2017 by tipsforme

In July I’ve been over busy so I don’t have a Tips post for you (except for saying “don’t get over busy if you have ME!”) but this is an update about what I’ve been up to. I’m actually doing reasonably well ME wise, I expected much worse PEM.

I’m working on the new Chronic Illness Inclusion Project with Catherine Hale (Jenny Horner is my married name, I use Lyus for work and official stuff). We are at the very beginning of a three year participatory social research project funded by Disability Research on Independent Living and Learning (DRILL). The long term point of this is to build a stronger voice for the chronic illness community within the wider Disabled People’s Movement and potentially influence social policy. This is particularly important in the face of worrying developments such as the Medically Unexplained Symptoms agenda now relating to most Spoonie conditions, meaning that some of issues that were specific to ME politics extend to most of us with these energy limiting illnesses (not at all the direction I’d hoped things would go!).

Most of my recent effort on the project has been building the website, so please have a look at www.InclusionProject.org.uk and let us know if anything doesn’t make sense or you spot any website glitches. To keep up to date with the project, click on the big Get Involved button on our website. You will sign up to our mailing list and be the first to know about new developments and blog posts, but you don’t commit to anything in particular by signing up. The first phase will be a small qualitative piece of research, so please bear with us as we organise that.
Click to expand...
https://tipsforme.wordpress.com/2017/07/29/inclusionproject-nice/
 
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