In May (2019), Dr Ron Davis’s team published a pilot study showing remarkable results for their nanoneedle device. Strikingly, there was no overlap between the results for 20 ME/CFS patients and those for 20 healthy controls, something that is almost never seen with this illness.
A member of Elevate had been been investigating accessible paths in her neck of the woods in anticipation of her outdoor wheelchair.
This put her in touch with Ella Meecham who is an Assistant County Trails Officer. She offered to meet our member to explain a project aiming to boost accessibility working with Norfolk Wildlife Trust etc.
Later it was suggested that Ella visits Elevate to talk to us. This is planned for 19th October and will take place alongside the usual social activities etc.
Not everyone with ME/CFS is well enough to get out the house but those that can often find it therapeutic to be surrounded by nature. Although there some green areas with good accessibility, I’m sure many people with this condition will tell of the challenges they have faced which can include:
- Finding a suitable place that isn’t too far to travel.
- Paths being too bumpy and causing a lot of pain in joints and other areas.
- Disabled parking and toilets availability.
More about the project
The project is called “Lift Off” and involves working with NWT and other sites like Sculthorpe to do accessibility audits. They are be running work trials for those who are out of employment and education (and have sufficient health and ability) and would like to gain some outdoor work experience, as well as perhaps needing a confidence boost.
“The idea is that we will carry out a number of access audits on a variety of sites across Norfolk including some Norfolk Wildlife Trust Sites, Foxley Wood being one of them. From the information we gather about the trails around the sites such as surface type, gradients, path widths etc we will produce a booklet with information about the access to the site. The NWT can then use these to share information about the site’s access. “
Do contact us if you’d like to know more about this event or pass on suggestions or questions to Ella.
This is being organised by Norwich Independent Living Group. The exhibition will be at the Millennium Library in the Forum from Sunday 16th September – day of the Norfolk Disability Pride event. The exhibition will run for 2 weeks then the photographs will be archived for future generations to see how we live today.
For more info about the Norfolk Disability Pride event:
Award winning film ‘Unrest’ is coming to Norwich at Cinema City Tues 24th Oct 6:15pm and will be followed by a Q&A panel with local UEA scientists, and politicians may be present. The film will also be screening at parliament. The filmmakers hope it will raise awareness and encourage governments to fund more biomedical research.
Home Streaming tickets
If you’re housebound or not able to make it to Norwich you can watch it at home by purchasing a digital streaming ticket. There will also be a DVD available later on.
Jennifer Brea was a Harvard PhD who got ME following a severe virus whilst she was studying. Her husband is Omar Wassow, a Princeton Professor who was also involved in Obama’s rise to power- he also helped her film her experiences and encouraged her to lobby for change on this terrible disease. Jennifer’s feature-length documentary is now screening at select cinemas worldwide and is already winning awards at International Film Festivals. It will be screening in Parliament in a couple of weeks time and it is having it’s official UK launch next week at Mondrian, Southbank where celebrities with ME, specialists, politicians and charity leaders will all be present.
In short: ME is now finally having its moment in the spotlight because of this movie and we need YOUR help. Of course, it goes without saying that some people with ME will not be able to attend the screenings- but part of Jennifer’s distribution strategy is to ensure that those bedbound/ house bound with ME can still access it. So if they buy tickets for the Norwich screening they will then be able to live stream it at the same time as everyone else is watching the movie!
Here is Jen’s TED talk which was the most-watched TED Talk of 2016- with more than 1 million hits and climbing:
Here are two different links giving info about the Norwich screening of Unrest at Cinema City on Tuesday 24th at 6.15pm: