MPs demand more biomedical research for cruel ‘death sentence’ disease | 22 June 2018
ME Association Press Release, By John Siddle, 21 June 2018.
MP’s demanded more funding for research into a cruel “death sentence” disease affecting 250,000 people in the UK – and the immediate end to NHS-recommended treatments that are making patients worse.
Carol Monaghan, MP for Glasgow North-West, led the debate on M.E. in Westminster Hall.
Less than £1 is spent each year on people suffering from the devastating invisible illness M.E. (myalgic encephalomyelitis), a condition which leaves tens of thousands bedbound, housebound and unable to work.
Parliament heard in a landmark three-hour debate of the chronic lack of funding for medical research and how many doctors still don’t know how to diagnose or manage the condition.
End to controversial therapies and to stigma
Politicians said that controversial psychotherapy and exercise therapies recommended by the NHS after a flawed medical trial must stop NOW – because they are making patients worse.
And they called for an end to the stigma and myths surrounding M.E., which at worst, leaves sufferers to endure a tortuous existence.
Westminster Hall was told how people with M.E. are six times more likely to commit suicide
PACE has had a wide-reaching influence
Ms Monaghan said one of the key authors behind the PACE trial, Professor Michael Sharpe, admitted that some involved in the trial had worked for insurance companies.
“Interestingly, Professor Sharpe, one of the authors of the PACE trial whom I already mentioned, emailed me this week and told me that my behaviour is “unbecoming of an MP”.
“I say to Professor Sharpe that if listening to my constituents, investigating their concerns and taking action as a result is “unbecoming”, I stand guilty.
“If Members of Parliament are not willing to stand up for the most vulnerable in society, what hope do any of us have?”