#MEAction Scotland News

Andy

Retired committee member
This month we want to honor the work of three women with #MEAction Scotland – Emma Shorter, Kim Gurav and Janet Sylvester – who have done an incredible job advocating for people with myalgic encephalomyelitis.

The partnership began last January when Kim and Janet wanted to organise a screening of Unrest, which – long story short! – led to an amazing screening of Unrest before an audience of 70 people at the Scottish Parliament. In May, the women took their activism to the streets by helping to organise the impactful #MillionsMissing protest in Edinburgh.
https://www.meaction.net/2018/06/29/volunteer-of-the-month-scottish-trio/

Congrats @Emsho :)
 
At #MEAction Scotland one of our projects is getting political parties to adopt party policies on ME. This means if they get into power, they should enact these policies!

The Scottish Lib Dem conference was today, and they voted through a motion which means biomedical research, and removal of GET will now be party policy (for more info on how this came about see here:https://www.meaction.net/2018/09/07/scottish-liberal-democrats-will-vote-on-motion-for-me/). It was originally removal of GET/CBT but a member submitted an amendment to drop CBT, which passed.

I wondered if they're the first political party in the UK to have a policy on ME? I thought the longer term advocates on here might know!

For any international readers, the Lib Dems have 5 MSPs, so they're not a big political party in Scotland. However, it's great to have their support, and was really heartening to see how many healthy allies engaged with the issues and supported the motion. We do have cross party support, so hopefully this is just the first...

Edit: correction, I originally said Lib Dems have 9 MSPs, but they have 5 MSPS and 4 MPs
 
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That's really inspiring news @Emsho.

I can see how that approach could work here in New Zealand to get one or two ME specialists in the country. Even 10,000 votes would be useful for a smaller party here, and, if the small party is needed to make a governing coalition, as the smaller parties often are, then acceptance of that policy may be one easy concession for the larger party to make.
 
I wondered if they're the first political party in the UK to have a policy on ME? I thought the longer term advocates on here might know!
I don't know for sure, but my guess would be that until now any party's policy on ME has probably been to not have a policy - or at least not one they would want to publicly own up to! Excellent news. Congratulations :).
 
There seems to now be two narratives about how this came about...
Scottish Liberal Democrats adopt new policy on M.E.

The Scottish Liberal Democrats voted to support a motion on M.E. at their party conference on Saturday, calling for a number of actions, including the removal of graded exercise therapy (GET) from the Scottish Good Practice Statement (SGPS).

Theresa Burns, Action for M.E.’s Scotland Project Coordinator, attended the conference, along with four Action for M.E. volunteers. Hosting an information stand, Theresa and our volunteers met with a number of MSPs, including Alex Hamilton-Cole, the debate’s summator, and party leader, Willie Rennie.
https://www.actionforme.org.uk/news/scottish-liberal-democrats-adopt-new-policy-on-me/
 
Having read both articles, they both seem to say the same thing: it was Emma Walker, a Lib Dem member with ME, who suggested the motion. Both organisations appear to have had information stalls, but neither is outright claiming it as 'their' triumph, as far as I can see.
Well I think it was #MEaction Scotland who more were the drivers and the other charity the tag along unless they were both invited. Odd because they’re writing separately yet must have been aware of each other etc and with their seeming (unfortunate) connection via FME they didn’t talk previous? I’ve queried it and posted on AFMEp page too. They generally claim Scotland as their territory but have a weak record on achievements on everything AFAIC. I see MS society are organising another petition, this time against NICE refusing a drug for PPMS. When did AFME last challenge the establishment behaviour on anything as an “action”patient movement, 2003?
 
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Having read both articles, they both seem to say the same thing: it was Emma Walker, a Lib Dem member with ME, who suggested the motion. Both organisations appear to have had information stalls, but neither is outright claiming it as 'their' triumph, as far as I can see.
#MEAction say they advised on the motion. AFME attended with a stall
 
To be fair I will put the Facebook responses, nothing untoward going on it seems, both charities did the same thing in response to action of a Lib Dem member by the looks but the first was sought for advice:

#MEAction Scotland

Emma Walker who is a member of the Lib Dem’s was the driving force and she is keen to keep things moving forward. She approached MEAction Scotland for advice on the background to the motion and we took a stall at the conference so we could support the motion. Action for ME also had a stall at the conference.


Action for ME
Yes, we were delighted to work alongside MEAction Scotland at this event and are so pleased with the outcome of the day. In having both charities present, we were able to successfully communicate the impact of M.E. to most of the delegates that were there.
 
To clarify.. I work with MEAction Scotland and have been involved in the motion.

Emma Walker contacted MEAction Scotland about raising a motion. We worked with her on drafting the motion (it echoes the main aims of our petition) and have been in contact with her throughout. We also got a stand on the day. AfME had no involvement.

AfME also got a stand on the day, independently of us.

(Louise )
 
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Well done, @Emsho, superb job!
Brilliant news @Emsho, well done to you and the other advocates in Scotland.
I can't take credit! All down to the Emma Walker and her friend, we (MEAction Scotland) just advised/worked with them on it.

@Goldfinch pretty much sums it up. I don't see a problem with the AFME article, seems to me they were just reporting the news.

Ironically, the whole point of the article about the motion (https://www.meaction.net/2018/09/07/scottish-liberal-democrats-will-vote-on-motion-for-me/) was about how our individual actions can come together to make change :laugh:. That's the great thing about being part of a team, and the wider ME advocacy community. Often it's not up to an individual or charity, but many different actions/people. Saying that, this motion was down to Emma Walker. Who is awesome.

At #MEAction Scotland one of our projects is getting political parties to adopt party policies on ME. This means if they get into power, they should enact these policies!

I wonder if it was this sentence that was confusing? When we we reported about the Lib Dem motion on social media we got loads of comments asking why we weren't talking to other political parties. I was trying to avoid that, as we're talking to a few parties about getting motions for their conferences next year!

https://www.libdems.org.uk/scotland
@Emsho - is the above link accurate as far as you know?

Yes, looks accurate.
 
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