MPs demand more biomedical research for cruel 'death sentence' disease MEA

[Countrygirl]

http://www.meassociation.org.uk/201...or-cruel-death-sentence-disease-22-june-2018/

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.

‘Unbecoming’ behaviour?

“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?”

 

[Alexi]

Walk 20 metres in my shoes Mr Sharpe....before you criticise. There speaks a man with no experience, no compassion and no real understanding of this horrendous illness

 

[alkt]

I do not like the headline grabbing "death sentence " disease that will scare newly diagnosed people unnecessarily and used out of context would harm our cause .

 

[Mithriel]

The disease causes a "living death" with far too many people chosing a real death as preferable to the twilight existence they have. People are bedridden for forty years or more unable to tolerate light, sound or touch. And let us not forget the many people who actually die. Just because coroners will not put ME on the death certificate does not mean they do not exist. Sadly, I have known some.

Other people trivialise our disease all the time, we should not do the same. In MS a lot of people live fairly good lives but that does not mean they deny the extreme disability of some.