United Kingdom: Sheffield ME & Fibromyalgia Group News

https://www.sheffieldmegroup.co.uk/post/meet-cort-johnson-of-health-rising

Register here to join the event: bit.ly/CortJohnson_SMEFG

As always the recording will be available to view on Facebook and YouTube afterwards, and will be broadcast live to Facebook.

 

Live from the desert!

 

https://www.youtube.com/watch?v=YIuHE27eCPU

- I have spotted Cort Johnson who has changed his identity and is now Tyrrell's Classic Workshop.

 

"ONLINE TALK with Prof Ron Davis: Progress and Challenges for a ME/CFS Diagnostic

We are thrilled to be hosting a talk and Q&A session with Prof Ron Davis on the progress and challenges for a Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) diagnostic. What a prestigious guest to celebrate the 20th anniversary of our charity!

This event is free and open to all."

Registration and further details at https://www.sheffieldmegroup.co.uk/...ogress-and-challenges-for-a-me-cfs-diagnostic

 

Anyone watch this?

 

New to me was the findings of high phenylalanine and low BH4. Ron also said they have other indications of low dopamine. Going to add Vitamin C/Folate to my supplement regimen to try and raise BH4

 

"This summer we're delighted to be partnered with Healthwatch Sheffield for their #SpeakUp! campaign - and it launches today!

1. What is #SpeakUp?

Each year, Healthwatch Sheffield works with local voluntary, community, and not-for-profit groups, to help them to reach out to the people they work with. Their aim is to help more people across the city to have their say about health and social care.

Last year they awarded small grants to 12 local organisations, which helped them to hear from over 790 people in Sheffield about the health and social care issues that were important to them.

This year Sheffield ME & Fibromyalgia Group were awarded a small grant to participate, so that we can capture the views and experiences of people in Sheffield with our conditions. Healthwatch Sheffield and SMEFG will write up the findings together, including recommendations for how services could improve, and make sure this is heard by decision-makers."

https://www.sheffieldmegroup.co.uk/post/speakup-blog

 

Recording of webinar: Working, or returning to work, with ME/CFS, fibromyalgia and/or long COVID

Sheffield ME & Fibromyalgia Group Facebook post:

Watch the replay on our website: https://www.sheffieldmegroup.co.uk/watch-previous-talks

Recently, Jon Dale, senior adviser at Sheffield Occupational Health Advisory Service - SOHAS, gave a presentation on the types of advice and support given to people who have ME/CFS, fibromyalgia and/or long COVID who are struggling to stay at work or return after a period of sickness absence.

Much of it will be relevant to people outside Sheffield as it talks about Access to Work and reasonable adjustments.

Local support available

You can find out more about the support available for people in Sheffield on the SOHAS website https://www.sohas.co.uk/ or call them on 0114 2755760. SOHAS Adviser appointments are available via some GP surgeries in Sheffield. Check with your GP surgery to see if they can refer you.

Unfortunately, we’re not aware of any similar services available elsewhere in South Yorkshire and North Derbyshire. If you have heard of or can recommend any similar free Occupational Health services in our area, please let us know as we’d like to share that with our members.
You can find out more about Access to Work and apply via the government website: https://www.gov.uk/access-to-work

 

Nominate this charity to get extra funding, takes 60 seconds

https://twitter.com/user/status/1792585195851227309

 

"We're hiring a Charity Director!

Job title: Charity Director

Hours: 28 hours/week

Salary: £37,184 pro rata

Start date: Early 2025

Duration: Permanent

Location: SMEFG Office, The Circle, 33 Rockingham Lane, S1 4FW and occasional home-working by agreement

Do you have a passion for making a difference to people’s quality of life, and the confidence to manage a range of projects and a dedicated team of staff and volunteers? Would you like to help our fabulous charity continue to grow and thrive? Then please apply to become our new Charity Director!"

https://www.sheffieldmegroup.co.uk/post/we-re-hiring-a-charity-director-1

 

Although I am a little outside their area, I am most impressed with the Sheffield Group that do a lot of good work.

Their benefits advisors seem to be particularly valued.

 

That one is the big link missing that I think charities and local groups should be focusing on getting right and funded


Without well-oversighted advocates that will hopefully get to know not just the condition but the types of situations it creates we are believed or backed up when we try and change what sometimes feel like deliberate barriers.

Or have someone who can submit reports showing how intimately the illness but also the deliberate misinformation/ old set ups affect each and every aspect of anything we do , often daily. We can’t even do what other better-respected disabilities might do and explain , using our energy once, so that it is adjusted in future because mostly people don’t want to choose to believe our educating them whilst the old people are enduring their old crap is everywhere suggesting we perhaps don’t really need it and just need to be encouraged how we can do it ourselves if we think differently about the task.

it makes everything we do draining twice over, once due to disability , second due to the disability bps have levied on us of an ‘ism’ they created and actively maintain . And one step, along with slowly changing that access on the ground, is to have each of these impacts plotted as part of what we hear as a load.