UK Parliamentary debate today - Thursday 24th January 2019

JemPD said:
thanks @Jonathan Edwards. Unfortunately everyone i have spoken to to try to explain this says that "well i wouldnt say what i was supposed to say, i would say how it really is". They don't seem to understand that their perception of 'how it really is' can be unconsciously influenced by how they are told it's supposed to be.
People seem to have a remarkable resistance to accepting that they are in any way susceptible to suggestion.

I will try to focus on the not subjective on it's own part next time i try it, perhaps that will help.
thanks for taking the time Jonathan
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I wasn’t in a study I was just on a CFS/me clinic programme but I definitely told them what they wanted to hear rather than what I was actually doing and how I was really feeling because I didn’t want to be chucked off the programme I was trying to keep my employer sweet by doing the NHS approach and not saying the right thing could have been a problem.
 

ETA:
hmm... seems the whole post from MP Carol Monaghan wasn't included.
It reads:

Carol Monaghan MP leading the House of Commons debate on ME treatment️ WATCH: My speech to lead the House of Commons debate on ME treatment

I thank all MPs who sponsored and spoke during the debate, and the the ME community for their support and lobbying in this and previous debates.

We have made a number of asks – the UK government need to take them seriously.
 
Robert 1973 said:
My feeling is that ring-fencing a large sum of money for high-quality ME research would do for ME what the Wolfskehl Prize did for Fermat’s Last Theorem, and what the Millenium Prize did for the Poincare Conjecture. It would generate interest from the best medical/scientific minds by signalling that this is an important problem that needs to be solved, and that funding will not be an inhibiting factor for high-quality research in this field.
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Yes. This makes sense.
 
Tom Kindlon said:

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This post has been bothering me. In particular, the sentence "It was only when the girl's parents sought the intervention of the secretary of state that the girl was allowed home and removed from the at risk register".

The secretary of state is apparently fully aware of improper decision making and treatment in one case. He cannot reasonably assume that it was an isolated case. So what enquiries has he made, or put in place, to ascertain the full extent of the problem and its precise nature, and to initiate remedial action? If none, why not?
 
From an email sent out by MEAction
Our Community Turned Out! YOUR action mattered!

Using the #MEAction tools provided, our community made their voices heard before their MPs. Together, we urged MPs to attend the debate with:
  • 2,921 emails to MPs
  • 538 tweets to MPs
  • 150 phone calls to MPs
Meanwhile, we made waves on social media with our #MEdebate hashtag trending on twitter with nearly 4,000 mentions. Our Social Media Coordinator, Holly, was busy posting across all platforms, and supporting the work of our volunteers. Our top post on #MEAction UK reached 105,384 people! Our #MEAction UK Twitter feed made 148,500 impressions. In addition to the 40 MPs who attended the debate, at least 17 MPs tweeted out their support for people with ME.
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Umm, I found blanchflower's tweets this way but I haven't a clue how to get them to post here.
 
Thank you to everyone with ME and their carers in supporting my Member of Parliament, Carol Monaghan MP and her 24th January 2019 parliamentary debate and the previous two debates in 2018. Thank you to everyone including on S4ME for contacting and asking your MP’s to attend.

Throughout the period of these three debates, severe patients with ME who are bed-ridden/housebound/tube-fed in mind were in mind throughout the whole of last year.

Thank you also to everyone who has contributed their little bit of advocacy over the decades and those who could not contribute to these parliamentary debates and actions perhaps due to their health but advocated in other ways over the years which all helped in these three parliamentary debates.

I have had to take some time out recently due to the effect on my own ill-health caused by working on this continually for over a year.

There were foreseen and unforeseen issues during this period. It has been brought to my attention and been made aware of some misinformation but was unable to comment throughout the parliamentary debates and a decision was taken to focus fully and entirely on the parliamentary debates to ensure maximum success for the ME community. In due course I will be able to communicate more and provide a debrief to the ME community.
 
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NelliePledge said:
Been announced on the BBC Nicky Morgan is standing down as an MP which will be a bit of a loss on the ME cross party efforts. Not a comment on her politics just it was helpful having someone fairly senior in that party speaking up.
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I too am disappointed to see Nicky Morgan is standing down. She has been very supportive of pwme in the Parliamentary efforts of the last year or two. She has also responded to letters written to her by non constituents about ME including from US if I remember correctly.

ETA: ‘about ME’ added in last sentence
 
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