News: Calling photographers, artists, illustrators

Can you help bring our work alive with images to convey life with chronic illness? We want to convey the sense that internet and communication technology are a lifeline for people who may be housebound. Do you have any creative ideas for how to portray both solitude, confinement, invisible illness and also the connection and solidarity that our screens can bring? Please get in touch if you have ideas: [email protected]
NewsInfluencing. Our research into benefits and work with chronic illness has informed a major report on disability employment. Switching Focus by Liz Sayce, says more must be done to give employment opportunities to people with fluctuating and energy-limiting conditions and also to include us in the disability rights movement generally.

Briefing. Ahead of planned meetings with MPs, we’ve produced a one-page document explaining energy impairment and why we are organising to change policies and perceptions on the basis of our lived experience of chronic illness.

Dialogue. I took part in a Q&A session about the Chronic Illness Inclusion Project with online magazine Spooniehacker.“It can be very difficult to disentangle the illness from the stigma that comes with it… how much negativity there is towards us, how much we have internalised it, and how profoundly it shapes our lives.” Catch up here if you missed it.
 Falling Down the Rabbit Hole
“The way health services are organised into many narrow specialisms creates significant problems for anyone with rare or under recognised systemic disorders. GPs are out of their depth and patients are passed from one clinic to another with consultants failing to see the big picture and none taking overall responsibility for care.” 

Guest blogger, David Johnson, writes about a lifetime of searching for answers to his chronic illness: the missed clues, the catch-all diagnosis of “chronic fatigue” that masked the cause of his health problems, and the battle with Atos that finally uncovered the cause. Read more
Have your say
Have you had cognitive-behavioural therapy or graded exercise treatment for M.E. or Chronic Fatigue Syndrome?
Your experience of these treatments must be heard. The National Institute of Health and Care Excellence (NICE) is rewriting the UK ME guidelines. As part of this process, the Forward-ME Group has prepared a questionnaire to provide additional evidence on cognitive behavioural therapy (CBT) and graded exercise therapy (GET) to NICE. Take the survey

What’s your position on opioid use for pain management?
This article in The Guardian says that doctors prescribe more opioids in poorer areas of the country and suggests that other pain management interventions are more effective. Would you prefer talking therapy or activity management to taking pain-relieving drugs? Or do you struggle to get the level of pain-relieving drugs you need from your doctor? Email me with your thoughts.

Thanks and best wishes,

Catherine

For further information about the project please click on the link Chronic Illness and Citizenship – Mobilising a Collective Voice for Social Change
 

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