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 :thumbup:

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

Emsho said:
(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!)
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I'll start the discussion with other committee members.
 
Emsho said:
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.
Click to expand...

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.
 
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.
 
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