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News update: CFS, muscular dystrophy, self harm

Emma Emma | 16:11 UK time, Friday, 29 July 2011

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

Scientists have said that the campaigners object 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 shared the emails 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

Doctors begin major stem cell trial for MS patients
Australia probes self-harm by asylum seekers
Castlebeck care 'concerns' raised by regulator
Duchenne muscular dystrophy drug "exciting"
Jersey to get anti-discrimination law
Guardian Comment Network: David Cameron is stuck in a timewarp on disability benefits. by Declan Gaffney
Ofcom demands better service for disabled customers
Fit-to-work tests a 'flawed process', MPs say
Welfare to Work policy 'casts the disabled as cheats'



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