Discussion in 'Advocacy Action Alerts' started by NelliePledge, Jan 9, 2020.
Report from MEAction, which from a quick scan shares the vast majority of the same text, https://www.meaction.net/2020/03/17/appg-on-me-biomedical-research-meeting/
I’m very pleased by the nature of these presentations and the fact that the researchers themselves are impressing the problems due to lsck of it and need to MPs. The fact Julia newton had actually stopped ME research because of funding difficulties wasn’t something I was aware of and perhaps explains why she left the CMRC. But what’s the point of saying we need to encourage researchers via CMRC when the big two we have Can’t get funds. Personally I think that the policy to only fund Uber high standard stuff and just leave the field barren if that’s it or if the competition out does the ME applications, isn’t correct. That’s why ring fenced funding has always been needed.
I’m still essentially lost really as to what the charities want on funding and what their methods are going to be go get it. This frustrates me because we have needed a lot more funding for a long time and theGWAS study wasn’t enough. I don’t think we Have been represented enough on this by those who have been sitting around tables with the establishment.
Chris ponting did specifically say ring fenced funds were needed “
But other people in APPGs, invest in me et have called for this before, sometimes years before.
I’ve been calling for this on the charities Facebook for years. AFME do nothing but say “we need more money” and The ME association have repeatedly defended the MRC position. If not the MRC are they meaning government?
I haven’t seen any lobbying or campaigning on funding since the 2012 round and the 2013 APPG when both charity heads requested it and sue waddle from MERUK saID ME progress needed oversight, but MRC declined, a choice on their behalf.
. Supporting #MM to apply pressure on funding would have seemed logical if you really think there’s a huge need, but this didn’t happen. And now finally we have the #PSP announcement Suggesting a process is involved, so I assume this stating of urgent need isn’t going to immediately translate into calls for it. so Who knows really the figures wanted, from who, when and how? Shouldn’t that all be clear if we are to campaign, or is campaigning not wanted by those deciding all this?
I didn't realise that Julia Newton has quit researching ME/CFS.
Great - my MP Scott Mann attended. Does this mean that he is a member of the APPG?
Do you belong to #ME Action England SW on FB @MeSci ?
If so , or whatever we are supposed to do these days! I am one of the Admins.
It is recorded in our records that Scott Mann gave a very supportive speech at the ME debate January 2019. As long as he is not a PPS (Parliamentary Private Secretary), a Minister (Junior upwards) or a member of a Select Committee, then, I presume that his presence at the APPG shows a willingness to be a member.
I have recently spoken to Siobhan Baillie (Stroud) who is a new supporter, but she can only ask to be kept informed by the APPG (but not officially be a member because she serves on a Select Committee).
I think they have ample members of the APPG now, for it to exist/function etc.
Great that more MPs are happy to be kept in the loop though.
I think “our Guy” would be scared not to be kept informed (by APPG) .....otherwise the 4 of us - able to debate with him - would be on the War Path (well, wobble, sticks, wheelchairs!) to his door again.
No - I'm not on Facebook.
if you would be interested in being put in contact with other constituents/receive any updates re Scott Mann, please message me through Inbox and I am happy to give you my email address to discuss further.
I can also ask the other FB Admins, for any other ideas to include you with any local work being done.
No worries, if you would prefer not.
Anyone know what “we need ring fenced sustained funding” actually means/will mean in real terms?
No thanks - can't manage anything extra at present. Thanks anyway!
Wasn’t there an APPG meeting due this month? You’d think this type of thing could be arranged virtually via zoom etc
I noticed this tweet from an MP (Concerning the government removing on-line voting and making MPs queue to vote) who suffers from POTS and thought it was worth flagging as she may be sympathetic
MEAction also provide a link to a template email for you to send to your MP.
Even if they have not been interested before, or are unlikely to attend it is good to keep MPs informed. You could mention that the concerns that some people are likely go on to develop ME after COVID 19.
Majority of people with ME have developed it after an infection, often viral.
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