Briefing paper for parliamentary debate.

where is the vote posted?

 

There is no vote as there was no time in which to hold the vote. MEAction's briefing document for MPs will go ahead without S4ME backing.

 

The new briefing is here, by the way: http://www.meaction.net/wp-content/uploads/2015/05/ME_Briefing_21_June_2018.pdf

 

I can't seem to open it, anyone else having difficulty?

 

I opened it, thanks for taking people's ideas on board. I am way happier with updated version.

 

I'm so glad. I'm much happier with it, too.

 

I know about 1500 people have used the 'contact your MP' feature on the #MEAction website, so that's a lot of MPs who will now be seeking case studies and info!

The next really useful thing to have would be a PDF of case studies. A selection of adults and children from across the different severities, each chosen to highlight a specific problem area in ME treatment and research. Real people, real faces, real problems. So a child taken from her parents for worsening under the GET regime. An adult sectioned for whatever reason. Another who went from mild to severe because of poor treatment.

That might require a lot of work, though, so maybe it's something to plan for a future main hall debate in Parliament.

 

The 2015 ME Association report on their poll also includes lots of patient testimony from respondents: http://www.meassociation.org.uk/wp-...No-decisions-about-me-without-me-30.05.15.pdf

 

Yes, I've seen that one. I keep referring to the part on most/least appropriate source of care (GP and psychiatrist, respectively). That's mainly the source of Keith's 2017 paper on harms. Though unique individual stories with a picture of the person affected would be more compelling/persuasive, I think.

 

i was just about to post the same; but also that a lot of these stories were in the press in May (also maybe on both AfME and MEA FB). I think as @adambeyoncelowe said maybe draw up a list of 'categories' and then see if any of the stories fit the bill.

 

All great ideas. Thanks.

Another thing Nathalie suggested was some way of capturing complaints/bad experiences with clinics (that anyone can contribute to).

 

I see Adam has already posted the updated briefing (which I'm also much happier with), this short article from MEAction about the process of revising it is now up on the website too:
https://www.meaction.net/2018/06/14/read-the-new-parliamentary-briefing/

 

Seems some people really didn't like the briefing document, or at least AfME's part of it and involvement.

https://memanchester.wordpress.com/afmecomplaint/

 

Not me, I just stumbled across it on Facebook, it was the first time I'd seen anything by them.

 

This is where Karen Morris' public resignation from MEAction was published so I think it's her public complaint to AfME. I don't know who ME Manchester are and if it's made up of more than one person.

Using myself instead of me makes my teeth itch.