³ÉÈË¿ìÊÖ

A glimpse into the lives of disabled people from all over the world, via Twitter. With added fascinating biogs.

Just seen AWFUL bumper sticker: 'Men are like parking spaces: the good one's [sic] are taken & the rest are handicapped or too small.'
. Blogger and breast cancer surviver

Figured it out now. If I want to be treated like I'm lazy use the mobility scooter. To be treated like I'm stupid use the powerchair.
. Mum with fibromyalgia

One of my Uni friends said recently that I have too many disabled friends... Um no, but I'm thinking that one less Uni friend will be fine.
. Occupational therapist and musician.

A coworker with an ear infection just came up to me and said that now she understands what it's like to be deaf. Uhh, I have no words!
. Deafblind, Herbalist, Canine Massage Therapist from New Orleans

The ³ÉÈË¿ìÊÖ's Tom Feilden reports this morning that scientists working on alternative treatments for Chronic Fatigue Syndrome, also known as ME, have and been subjected to a campaign of intimidation.

Scientists have said that the to any assertion that CFS could be connected with mental illness and are critical of the money or research time given to this area.

CFS was classified by the World Health Organisation as a Neurological illness, rather than a psychological condition, in 1969. A link between CFS and a retrovirus called XMRV was reported in the Science paper in 2009, but retrovirologists have since been unable to replicate these results.

Many people living with CFS, and those who treat them, are in no doubt that it is a neurological condition and would prefer government money were spent on biomedical research.

Some messages sent to scientists involved in exploring alternative CFS therapies were read out on the Today Programme this morning. (the report contains some strong language)

"To those of you who are responsible for preventing us sick, ME sufferers getting the help we need, wasting five million pounds on flawed bulls**t, you will pay."

Scientists have due to fears that the campaign is causing researchers to discontinue their studies relating to chronic fatigue syndrome.

Action Now, a patient-driven initiative which aims to make neuroimmune disease advocacy more accessible to sufferers and their loved ones, wrote a campaigning letter to Andrew Lansley earlier this year. In it, they stressed the need for money to be ring fenced for a biomedical approach.

"There is an acute need for research into this disease, largely due to the remarkable lack of funding to date. No significant disbursement has ever gone into funding biomedical research into ME and yet this debilitating disease afflicts an estimated 250,000 people in the UK."

Dr. Chris Shepherd, medical advisor to the ME Association, who has experienced the illness himself, told Today's Sarah Montague that the only biomedical research carried out around CFS has been funded by charities.

Elsewhere in the news

•
•
•

•
•
•
•
•

"We used head pointer gadgets before you ever did", Laurence Clark's Edinburgh Fringe show and The Kids of Widney High are our unsigned musicians. Mat Fraser and Liz Carr present.

• Liz unearths a picture of a new smart phone product which, for all the world, looks like a head wand pointer that disabled people used to use a lot. Prompting a discussion about how the mainstream market is waking up to the benefits that disability inspired gizmos can bring.

• Edinburgh Fringe show 'Health Hazard' looks at how disabled people fare in the competition-driven health service in the USA and imagines a less disability friendly NHS should reforms take place here. Lots of comedy there, then? A great interview.

• The cast of Glee join us. Oh no, sorry, I mean , all the way from Sunset Boulevard in LA. We talk to them and hear their track 'Life without the cow'.

Coming soon

An hour long summer special will hit your ears and hit your mp3 players in early August. Golf, swimming and not offending people with a speech impairment appear to be on the agenda (Rob's idea). Presented by Liz Carr and Rob Crossan.