UK 7 June 2018 | MSPs discuss ME treatment on Holyrood Live

Thanks for the comments @Trish @Sean @Amw66 and @Sasha and @Andy for posting all the updates.

Inevitably I forgot to mention things I really wanted to, I was going to use Carol’s quote about PACE and majority of patient’s reporting harm in surveys in speech, but as you can probably tell cognitive problems were kicking in!

The only steps the committee could take this time round was writing for more evidence to decide on actions to take, so we got what we wanted.

We’ve given them the contact details of all the Uk charities and Dr Gerharty.

Anyone can submit evidence, so if anyone has contact with U.K or international doctors\researchers who would be willing to write to the Scottish Parliament would you please dm me ? Particularly ones who would be willing to write a short letter about care, CBT/GET and/or biomedical research.

(P.s we haven’t submitted the S4ME PACE briefing as we didn’t want to overwhelm them with info all at once, I did wonder if the S4ME committee would consider submitting it? Also may then be more likely to be read!)

 

Cognitive problems or not I thought you did brilliantly Emma

Have you thought about asking David Tuller, @dave30th , if he might write to the Scottish Parliament in support of this?

I'll start the discussion with other committee members.

 

Welcome back!

Since you're making a call to action, would it be good to start a new thread specifically about that? Not everyone who might respond might be reading this thread.

 

Yes, managed to get contact details yesterday, so have sent him a message.

And fab thank you

 

You were amazing @Emsho! Thank you for all of your great advocacy work.

 

I’m not sure how to do that! Although might wait til we have deadline confirmed.
Provisional time frame we’ve been given is approx 4-6 weeks @Andy

 

You just click on the 'forums' tab on the menu bar, chose a subforum (Advocacy Action Alerts, probably), click Post New Thread and you're off.

 

Very impressive performance with all the courage and endurance of a true champion @Emsho, and brilliantly supported by Janet and Chris. Thanks to you all.

You looked exhausted towards the end, Emma, so look after yourself. Hope the knowledge of all our appreciation for your heroic efforts will help you get through any PEM a tiny bit easier.

 

https://twitter.com/user/status/1004806339162406912

 

Stellar job again, @Emsho! Fantastic video clip of you in that TV thing (hit 'play' in the above Twitter thing, folks, and you can see the 30-sec news clip). You really put the message across powerfully.

 

This might be a historical moment: A wheelchair as picture to illustrate the topic ME and not a perfectly styled yuppie with a cup of coffee yawning in the office.

 

This is outstanding advocacy, it felt real, you could witness the effects of brain fog later on..this is important for people to see.

Chris was excellent! Janet too.

 

I only just now spotted this thread and watched the video.
@Emsho, you were terrific! All three of you were amazing, thank you for such powerful advocacy