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So does this mean that clinics treating youngsters with ME, will now stop threatening them with social workers because they are spending too much time on their phones/other screens?

I am not sure how long this toolkit has been around. It is undated. Under acknowledgments it does say: "This resource is based on the considerable knowledge and experience of Paul Davey, Project Coordinator, and Amanda Mason, Employment Adviser, who delivered our specialist 18-month pilot...

I thought I remembered it in connection with Invest in ME: http://ldifme.org/2019/01/09/walk-for-me-2019/ This started several years ago, for friends and family of people with ME to do sponsored walks. @Graham has your family been involved with this?

Link is working for me atm.

I totally agree that there is progress. I think the work of @dave30th has been crucial as well. As for NICE, they were listening and saying the right things at the stakeholder engagement and scoping meetings, but some still say the complete opposite behind closed doors.

I remember coming across some info re the main guy who was at AfME who headed this up. He is now a work/life coach.... If I remember where that was or any more I will link to it... I used to have a brain/memory!

I see that they are looking for stewards to help at the Conference....

@Graham was a Maths teacher. Don't know if this would interest him.

Their CEO is off, having surgery, so I suspect some of their other activities may be reduced for a while. Hopefully they are concentrating on removing BPS info from their website.

Had hoped that the reference to "Eminence-Based" Medicine meant that she had been reading Brian Hughes' book.

I think funding is an issue too. As NICE currently recommends CBT and GET, then that is what CCGs will pay for. There was a very informed neurophysio at the NICE engagement workshop in Jan. Their clinic provides home visits/letters and help with other coping strategies etc. They are not "doing...

I am just getting error msg when type in above. If I try link directly it just goes to med school info.

@Sly Saint it's such agood thing that I didnot have this imge in my mind at last week'sAfME AGM as countess amar was giving a serious talk on advocacy and i would have had difficulty keeping a straight face.

It was mentioned in an interview that Mark Taylor gave at the Cochrane UK conference in UK, Sep 2018: (@MTaylorOxford), Head of Impact for the Central Commissioning Facility of the National Institute for Health Research, about research impact, his own experience of multiple sclerosis and how...

This interview is from the same Cochrane mtg, same interviewer and is supposed to be about Evidence Based Medicine with a GP.. http://www.evidentlycochrane.net/evidence-based-medicine-relationships-and-trust-cochraneforall-interview-with-dr-margaret-mccartney/

This blog was referenced on a recent email from Cochrane. It's from the time of their Sep 2018 conference in Edinburgh. http://www.evidentlycochrane.net/9663-2/ The interviewee has MS and has a key role at NIHR and the interviewer is from Mental Elf!

@Liv aka Mrs Sowester lives in the affected area and posted about it previously. Maybe on a PR thread. I do hope she is doing OK as we haven't heard much from her recently.

Sounds familiar.

LOL you'll have to ask @Nathalie Wright as she was At the same table. :emoji_juggling:

Puts whole new angle on the "West Wing". He looked pretty scary at the NICE stakeholder engagement meeting in Jan. He was on a table with the Countess of Mar.