Search results

Yes, will try and remember to post here when published.

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...

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...

We’ve asked Dr Tuller to submit evidence, this call out is for people to submit their personal stories of harm of GET/CBT, to back up the submissions made by Prof Edwards, S4ME and (hopefully) others we’ve contacted! Thanks for sharing @Melanie, I completely forgot to post on here :ill:

Thanks @Amw66 and @arewenearlythereyet will check them out :)

Hadn't realised there might be apps for this sort of thing, thank you for the recommendation! Oops! Have edited :laugh:.

Any ideas on the best format/method for keeping track of symptoms? Inspired by a post by @JaimeS about the need to keep a symptom diary, realise need to keep better track of my symptoms to know what's helping or not! How do you record and measure your symptoms and changes? Any ideas for...

Thank you both! @Amw66 and @Dx Revision Watch

Not yet! Still expecting a lot more submissions and want to see what others says before we decide how to phrase our response. Problems with PACE should hopefully be pretty comprehensively explained by different submissions, including S4ME's briefing (thanks @Trish!) I wondered if their point...

David Wilks was a centre leader during PACE, he was seen as the "ME specialist" in Lothians, and Sheena Spence (physiotherapist) was also involved in PACE. I've heard Dr Wilks has just retired. In the petition background info we just used Carol monaghan's quote! So they do not accept the...

I think this might be related to the following, i.e the problems people with depression have with Wessely and co I was contacted by a patient group in Scotland after the petition, they had a petition going on at the same time which focusses on drug dependence and withdrawal issues associated...

Fantastic to have your support @JonathonEdwards and thanks again for writing such a great submission. I thought people interested in this topic might like to see this submission from NHS Lothian, this is the healthboard in which Scottish folks involved in PACE have set up a CBT/GET clinic and...

Thanks @Andy and @Melanie ironically come during a quieter month! :asleep::asleep:

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

Yes, managed to get contact details yesterday, so have sent him a message. And fab thank you :)

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...

Thanks for making a brilliant PACE briefing! I've asked a S4ME committee member if I can give it to Scottish Parliament MSPs, so will be taking it along for evidence when meeting with them tomorrow.

@Sasha thanks for posting! It's being recorded live by the BBC for Holyrood live, so folks should be able to watch it from the link in first post. Scottish Parliamentary researchers have prepared a briefing for the committee members, which they will read beforehand, this can be viewed here...

Next Action (not sure if should be new thread or not!) Scottish people, please contact your MSP,especially if your MSP is on the petitions committee that we're meeting with next week. Constituency MSPs on the committee are from FALKIRK EAST, ETTRICK, ROXBURGH and BERWICKSHIRE and STRATHKELVIN...

We made it! 7,036 :)