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I imagine they are pretty pissed off that he would use a position he no longer has to claim expertise and in doing so undermine all the work he knows A4ME have done to distance themselves from such hogwash. Really scraping the barrel.

#MEAction press release sent out yesterday: https://www.meaction.net/2020/11/10/u-turn-on-me-cfs-guidelines-could-help-long-covid-patients-press-release/ We actually just heard via a couple of journalists yesterday afternoon that NICE had put out a press release, so we rang NICE and asked for...

Absolutely this. Well said @Andy

Yes! This will be published on the NICE website along with the draft. It's normally a table in which you have to say what document you're commenting on, the page number and then the line number. Then there is a separate column for your comment. Responses are welcomed from individuals and...

I've asked NICE for this but not received a reply.

Thank you @Trish. Though gotta say most of this not me - Elyane, our communications officer, is doing an incredible amount at the moment, along with the trustee board, and 2 benefits advisers. I am a very small cog in this machine.

Recording is now up again! Find it (and all our other recorded talks) on our website here: https://www.sheffieldmegroup.co.uk/watch-previous-talks

I felt this deeply during the talk. Really made me wonder what my life could have been like if I wasn't advised not to get aids (especially ear defenders which massively helped me), and if I wasn't constantly being told to find that little way of increasing my activities - like pushing my sofa...

Had to remove video from facebook due to some issues. Will be reuploading it asap and posting on youtube as well. I'll add links here when available. It was an excellent talk full of practical advice. I'm deeply grateful to Mark and Staci for speaking to the Sheffield Group.

Live on facebook atm - some really good advice from Staci and Mark.

Stop. Rest. Pace. - New global information campaign around Long Covid, ME, and PEM. We knew this was coming. So many people with myalgic encephalomyelitis (ME) develop the disease after an infection, up to 80% in fact, and evidence is mounting that a non- trivial percentage of individuals will...

Yep, will be available on Facebook immediately afterwards and we'll upload it to YouTube asap :)

You can watch via facebook without registering, but if you want to watch via zoom itself you'll have to register. We'll keep an eye on comments on Facebook, as well as engaging in the comments on zoom. So you should be able to put forward questions through either platform, with the proviso...

Amazingly, we've got about 320 registrations for this event so far! We've been reaching out to long covid groups as well, and so hope this can have relevance to many people, and in an ideal world stop some of those who are developing ME from pushing themselves into a more severe state. Had...

Preventing Post-Exertional Malaise – Pacing and Energy Management in ME/CFS An online talk by Staci Stevens and Dr Mark Van Ness of the Workwell Foundation for Sheffield ME & Fibromyalgia Group 2:30pm Thursday 22nd October More info here...

First event happening at 2pm today. PIP tips: How to successfully navigate the system. Mon 5th @2pm with benefits advisers Ellie and Sarah. Click on the event name in the calendar on this page to register and get the link to the zoom session: https://www.sheffieldmegroup.co.uk/octoberfest2020...

Available on Facebook to watch in your own time now:

Yes! On facebook immediately and on YouTube as soon as we can get it uploaded.

Sheffield ME & Fibromyalgia Group invite you to: Activities include: PIP tips Murder Mystery Mindfulness "Why real food matters" workshop Singing Quiz Play Reading Writing Workshop with childrens author Berlie Doherty "What is a trustee" workshop And more! Check out the full calendar of...

Sorry so late posting this! 2pm today Thursday 24th September 2020 ME/CFS in children and young people - an ideal approach compared with less than ideal approaches This talk is especially relevant to families supporting young people and those not getting the support they need from schools and...