regarding the Westminster debate
the APPG & action from Me should not be framing their response to the failed delivery plan as “it‘s a welcome step”. It facilitates the government to take this completely unacceptable position
“the beginning, not the end” and that not all proposals were included, but they can still be considered in future. "
People like me , bedbound decades as a result of poor nhs care & harmful management advice, are literally running out of rope. The beginning of government involvement was actually the 2002 chief medical officers report
Was presented as a milestone at the time. http://news.bbc.co.uk/1/hi/health/1755070.stm
It had none of its recommendations around research on all aspects; severe ME care; education or awareness implemented. It also recommended commissioned research but the ME association rolled over when the MRC replied to them , in private correspondence, that they were not going to do that.
The very minimum that representative charities need to do after all the lost years, is make it clear the DHSC non delivery plan farce of 3 years was a betrayal. We were not looking for “acknowledgment” & a building block but a compensatory, last ditch lifeline
https://www.bbc.co.uk/news/articles/c51y7zq4pgno
the APPG & action from Me should not be framing their response to the failed delivery plan as “it‘s a welcome step”. It facilitates the government to take this completely unacceptable position
“the beginning, not the end” and that not all proposals were included, but they can still be considered in future. "
People like me , bedbound decades as a result of poor nhs care & harmful management advice, are literally running out of rope. The beginning of government involvement was actually the 2002 chief medical officers report
Was presented as a milestone at the time. http://news.bbc.co.uk/1/hi/health/1755070.stm
It had none of its recommendations around research on all aspects; severe ME care; education or awareness implemented. It also recommended commissioned research but the ME association rolled over when the MRC replied to them , in private correspondence, that they were not going to do that.
The very minimum that representative charities need to do after all the lost years, is make it clear the DHSC non delivery plan farce of 3 years was a betrayal. We were not looking for “acknowledgment” & a building block but a compensatory, last ditch lifeline
https://www.bbc.co.uk/news/articles/c51y7zq4pgno
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