UK Parliamentary debate today - Thursday 24th January 2019

NelliePledge said:
Stephen Pound on the Labour side also stepping down. There will be a fresh effort needed in quite a few constituencies to lobby the new MPs to try to get them educated about ME.
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I think this is one way in which individuals with ME could do more. I think there is a limit to what group campaigns and especially template letters can do so imo individuals need to be in touch with their own individual MP. However hard it is for our energy levels and brain fog, it just needs doing.

I know many MPs seem unresponsive but I think we have to suck that up and still keep pursuing them one by one. Some MPs are particularly well suited to constituency work, and so may be more readily responsive to our efforts. From Nicky Morgan’s statement, she enjoyed that side of being an MP, but she also went for high office.

New MPs may be particularly suited to being educated and getting involved. When our long-standing MP lost his seat in the Libdem annihilation in 2015, we were able to engage with the new one to write to Bristol University re consents for EC’s work. Not that it did any good but imo it was still worth trying at the time when he was trying to make a name in the constituency.

During the next few days, other health permitting, I will write to Nicky Morgan to thank her for her efforts.

Ed: email thanking Nicky sent
 
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I’m not sure any Parliamentary changes are really a big loss as there wasn’t an organised parliamentary effort after the HoC debate, there isn’t an APPG and i’m not sure , as we wait for the GWAS funding announcements and NICE review next year, if there’s great will from the forward ME groups for any particular parliamentary intervention. Nicky Morgan spoke very well at one HoC debate where she acknowledged the crucial point that medicine can get it wrong and can close ranks when it does , needing outside intervention, but didn’t so much at the next.

I think that writing to her and asking for her continued support is worthwhile , I have written to my MP several times over years, but I’m not sure as a community we have Clear targets for any radical change for parliamentarians to intervene on now NICE G review is soon, we don’t have campaigns on funding or services needing support from my vantage point..
 
Eagle said:
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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I am sorry @Eagle if you are still lacking in stamina, but if you are able to expand on your comments from April, it would be very interesting.
 
NelliePledge said:
Seen on Twitter ( admittedly on parody Boris Johnson account but it is true ) Nicky Morgan is in fact staying in politics going to the House of Lords - Baroness Morgan - and at least for the time being remaining in the Cabinet.
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Yes, I saw that on the news last night. Her staying in the the Cabinet is only a temporary measure, from what they were saying.



eta:
MP John Hayes (Con)
Returning to Parliament this week, the mission to elevate those with least remains my primary priority. During the last year, as I led campaigns for those suffering from multiple sclerosis, diabetes, Chronic fatigue syndrome (ME), deafness in childhood and Spinal Muscular Atrophy, I was reminded repeatedly of the fragility of the human body and the duty of the fortunate to protect and promote people amongst us struggling with illness or infirmity. By raising awareness, ensuring optimal treatment and prioritising effective prevention, I want to make a difference to all those in need.
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John Hayes MP - interesting that ME gets a specific mention. He wasn’t one of the gang of 5 who made the request to the backbench business committee so not right at the forefront but wondering if he was one of the 40+ who spoke in the debate?
 
NelliePledge said:
Was trying to google to find this years debate.

this debate from 1999 came up I read the opening which was by Tony Wright a well respected former select committee chair. Very interesting and possibly of use in future advocacy with current MPs to show how little has changed in 20 years since this debate @EspeMor
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Thanks Nellie! We are updating all our databases and working on next steps to lobby MPs and engage the community and local advocates. As has been said before, there are key points we need to take into account, including the upcoming NICE guidelines, funding from MRC/NIHR -GWAS study hopefully gets funding-, educate new MPs about ME, care and disability and so many other things! Do let me know if you all have any suggestions! :) I am easier to find at espe@meaction.net FYI
 
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