Over the past week, shoes have begun to be strategically placed and photographed around Salford at MediaCityUK, on the Crescent, and even over the border at United's Old Trafford.
They represent the millions of people suffering with ME who are 'missing' from their own lives. In Greater Manchester alone, almost 9,000 people have Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), which causes dysregulation of both the immune system and the nervous system. The effects are enough to leave 25% of patients housebound or bedbound, and an estimated 75% unable to work.
Tomorrow, Saturday, 12th May, to coincide with ME Awareness Day, there's a huge 'visibility action' in St Peter's Square in Manchester, part of a global #MillionsMissing campaign happening in over one hundred cities, with speeches and a mass laying of shoes. People are asked to bring shoes and wear an item of red clothing.
Karen Morris, a patient who set up the groundbreaking national Healthwatch ME feedback project and sister project with Greater Manchester CCGs as part of the Devolution pilot, laid down the Salford shoes for the photos. Particularly poignant for her were the shoes outside the old Fire Station on the Crescent, as her great, great grandfather was Salford's first fire chief, Albert Bentley.
Karen has also produced a special vlog which will be released on the day*, in which she talks about how the system with Healthwatch and CCGs needs to be reformed; discusses problems with third sector regulation, patients' rights under the NHS Constitution, and lack of proper exclusion testing. Finally she encourages all patients to keep giving direct feedback through different organisations such as Patients Association, Patients Voices, Care Opinion, and others...
"There are too many patients without proper medical help or care, forgotten about, without a voice" she says.
Millions Missing
Saturday 12th May 11am-2pm
St Peter's Square, Manchester
For further details about the event see the Facebook event page click here or the Millions Missing website click here
For details of the Salford ME/CFS support group see www.memanchester.wordpress.com
See also Karen's YouTube channel with more vlogs and patient stories - www.YouTube.com/isupportmeresearch
For details of global action see http://millionsmissing.meaction.net
* The link to Karen's video is now live - click here
UPDATE: 12th May - For a full report and photos of the day - click here
.jpg)
.JPG)
.jpg)
.jpg)
.jpg)
(3).jpeg)
.png)
(1).JPG)
