ME: Treatment and Research
Debate between Scott Mann and Carol Monaghan(6 years, 5 months ago)
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Carol Monaghan
I was not aware of that specific centre, but I am aware that almost all the biomedical research currently taking place in the UK is funded by charities and patient groups, rather than by the Government or research councils.
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. [Hon. Members: “Hear, hear!”] If Members of Parliament are not willing to stand up for the most vulnerable in society, what hope do any of us have?
Scott Mann (North Cornwall) (Con)
The hon. Lady is making an exceptionally good point about this whole challenge, and the number of Members in the Chamber is testimony to her leading an exceptional debate. Many of my constituents have written to me about this issue. Is the thrust not that the ME community needs to be listened to more broadly in the review by the National Institute for Health and Care Excellence?
Carol Monaghan
NICE has said that it will review its guidelines and talk to patient groups and ME charities in doing that. We must continue to urge it to ensure that that is the case, because those best placed to talk about the impact of the current guidelines and what should be in future guidelines are those living with ME.