United Kingdom: Sheffield ME & Fibromyalgia Group News

The below is from Sheffield ME & Fibromyalgia Group. Would be grateful if people could distribute around any Sheffield related networks and/or share with people who may be interested in applying. I'll attach as a word doc too in case you want to download and send that way. Thanks!

Job Vacancies at Sheffield ME & Fibromyalgia Group
We are excited to be recruiting 3 new members of staff to join our team. They will significantly expand the service we are able to offer members and reach out to many more people living with the debilitating chronic illnesses myalgic encephalomyelitis (ME) and fibromyalgia in South Yorkshire.

Information on each role is below including links to the adverts, job description and person specification, and application form where applicable. Please distribute widely across your networks.

Activities Coordinator
A part-time Activities Coordinator wanted to support and enable those suffering with ME/CFS or Fibromyalgia to join in activities and reduce isolation.

Sessional. £13 per hour, 13 hours/week until Feb 28th 2019.

· Job Advert here
· Job Description & Person Specification here
· Application form here

To apply, please email the application form, including the supporting statement to applications@sheffieldmegroup.co.uk by noon Monday 15th October 2018.  Please ensure you address the requirements in the person specification.

Information Officer
Gather, develop, and design high quality information using a range of media to disseminate to and engage with people with ME and fibromyalgia in their communities and online.

£21,000 pro rata. 30 hours/week. 20 days holiday + statutory holiday pro rata. Pension entitlement.

· Job Advert here
· Job Description & Person Specification here

To apply, please download the job description and person specification and send your CV along with supporting statement (maximum 2 sides of A4, ensuring you address the requirements in the person specification) to applications@sheffieldmegroup.co.uk by midnight Monday 22nd October 2018.

Benefits Adviser
The postholder will work to ensure those affected by myalgic encephalomyelitis or fibromyalgia can fully access the benefits they are entitled to, through tailored welfare benefits advice and support.

£21,000 pro rata. 18 hours/week. 20 days holiday + statutory holiday pro rata. Pension entitlement.

· Job Advert here
· Job Description & Person Specification here

To apply, please download the job description and person specification and send your CV along with supporting statement (maximum 2 sides of A4, ensuring you address the requirements in the person specification) to applications@sheffieldmegroup.co.uk by midnight Monday 22nd October 2018.

Sheffield ME and Fibromyalgia Group is an Equal Opportunities Employer and welcomes applications from all sections of the community. Post-holders will undergo a DBS check. Data protection: please note that when applying your data will be held in accordance with our recruitment privacy policy. Registered Charity 1095416.

 

Just boosting this. Deadline for the activities coordinator role is this coming Monday, 15th.

 

@NelliePledge it's on Facebook here if that's any good?



Or the three jobs are on the VAS website:
https://www.vas.org.uk/job/activities-coordinator-12671/

https://www.vas.org.uk/job/information-officer-12673/

https://www.vas.org.uk/job/benefits-adviser-12672/

The groups website is very much in need of a revamp, and they don't currently have a volunteer who's able and well enough to do this, so we haven't got a page about them there.

Thanks so much for sharing!

 

Would MEA put a link to this on their website?

 

@MEMarge thanks for the suggestion and sorry for the slow reply. I think we're aiming a bit more at Sheffield/South Yorkshire networks and MEA are more national. Charles Shepherd is at the groups conference today though so I'll get someone to ask him. Still predominantly housebound so can't be there to meet him myself. Admittedly I've left this a bit late now as deadline is Monday but we'll see.

 

Bit late posting this as so much has been going on but...

Sheffield ME & Fibromyalgia Group AGM with 3 Speakers from the UK ME Biobank

2-5pm Thursday 23rd May.

Anyone welcome to join us.
Quaker Meeting House, 10 St James' St, Sheffield S1 2EW, UK

Livestreamed to our Facebook page from 2:30pm Thurs 23rd May here: https://www.facebook.com/SheffieldMEandFibromyalgiaGroup/

Website event page here: https://www.sheffieldmegroup.co.uk/events-1/agm

I realise S4ME are already doing a Q&A session with the ME Biobank team, but if there are questions you'd particularly like to ask the above members please do drop them in the comments below and we'll see what can be done.

Should be a great afternoon!

 

Boost, happening today. Livestream from 2:30pm on this facebook page: https://www.facebook.com/SheffieldMEandFibromyalgiaGroup/

I'll endeavour to get it up on the group's YouTube account afterwards for those who don't have Facebook.

 

Live now, direct link to livestream: https://www.facebook.com/SheffieldMEandFibromyalgiaGroup/videos/436526033841719/

I'll try to check back here and can send in questions if anyone has anything particular to ask about their speeches, or ask on the livestream chat where I'm more likely to pick them up!

 

Sorry but i'll have to wait for the youtube version, as the facebook one keeps stopping.

Sounded interesting but I'm out of patience with constantly refreshing.

 

Same, we'll get it up on YouTube afterwards, not sure what's gone wrong

 

Livestream not quite as successful as previously, but I've uploaded the talks and Q&A session to YouTube. There are still a few pauses in the video, but if you wait it does start up again.

Here's the talks with Dr Eliana Lucerda, Shennae O'Boyle and Kate Mudie:

https://www.youtube.com/watch?v=iTrdg9ABivs

Here's the Q&A session:

https://www.youtube.com/watch?v=i0GiQ0jUJBU

Massive thanks to @The UK ME/CFS Biobank team for coming up to Sheffield!

 

"
You can join Prof Carding's talk through Zoom, or watch it livestreamed to our Facebook page, and a recording will be uploaded to YouTube afterwards.This is event is online only.

2:30pm Welcome and Professor Carding

3:30 Q&A

4:00pm Close

Join us on Zoom

https://zoom.us/j/94057622868?pwd=b0xyeWxCcGtXZ1l6b0dkbVNpM3JHdz09

Meeting ID: 940 5762 2868
Password: 782865"

details here:
https://www.eventbrite.com/e/gut-mi...-simon-carding-tickets-95566039597?aff=efbneb

 

Cheers for posting this @Slysaint - I had been meaning to!

 

The Sheffield events usually are, I watched David Tuller’s recent (or a life time ago) MUS talk after the event.

[Added - Note - though I could not find it archived on their website, @dave30th ’s talk is still on their Facebook page
]

 

Both on Facebook and YouTube yes

 

Starting live now!

Join us on zoom https://zoom.us/j/94057622868?pwd=b0xyeWxCcGtXZ1l6b0dkbVNpM3JHdz09

Or watch on Facebook live:

Feel free to drop questions in the zoom chat, the Facebook chat, or here and we'll try to ask Simon.

I'll upload to YouTube after the talk.

 

I could only listen to him a few seconds but this man is amazing! I sincerely hope this trial will work out for us!! Hopeful!

 

Many thanks to Simon and to the organisers.

A couple of comments/questions in addition to those that I asked, and were answered, on Zoom.

1. Has what is listed in the slide below under “what we have discovered so far” been published in peer-reviewed journals? How much has been replicated?




2. Prof Carding talked about the importance of researching severe ME and the slide above refers to differences in the microbiome “signatures” between severe and mild/moderate ME. However, I note that the proposed FMT trial does not appear to include people with severe ME.

——

I hope there will be more of these Zoom presentations with other ME researchers in future. Excellent way for housebound patients to be able to engage. And much cheaper and more environmentally friendly than flying scientists around the world to attend conferences/symposiums. Maybe something S4ME could try to facilitate? @Andy