My first document

Soul Music

Thoughts on music and chronic illness

Spitting Feathers

Symptom in focus: coping with dry mouth

DecodeME

New findings and taking part

New events & activities

Contents Our Patron is Berlie Doherty

Letter from the Editor

Events and Activities

Volunteer with us!

DecodeME: New Findings

DecodeME: Taking Part

Care Plans Update Events

Please note: The views expressed in this newsletter are not necessarily those of the editorial team and any information given does not constitute or replace individual professional advice. We cannot be held responsible for omissions or errors and reserve the right to edit material submitted for publication. Sheffield ME and Fibromyalgia Group does not endorse or recommend products.

This magazine is produced by volunteers for our members. Copyright belongs to the individual authors of articles featured, unless stated otherwise. Please do not reproduce content elsewhere without permission from the author or from SMEFG

Cover image by DLChart at Morguefile

Our Sponsors

Letter from the Editor

As Summer becomes Autumn, I often think about changes in life. Change can be a difficult thing to process; sometimes we face disappointment or need time to grieve.

However, change can be hugely positive too: learning a new skill, making a new friend, or enjoying a new video game can lift our spirits and aid wellbeing. Of course, new things can take up too much energy, so remember that even very small changes can have positive results for our quality of life (see our game-changers article on page 19).

There are wider changes happening for people with ME - in this issue we have an update on how care plans should be implemented locally (p12), and we hear from a member who has been part of the Decode ME study, which is still recruiting (p11).

The next issue will be our Winter magazine, with the theme of 'cosy'. We’ll be taking a walk down memory lane with an article reflecting on the early days of our charity. As always, we would love to include member submissions, whether it is a photograph, an art/craft piece, a short piece of writing, a book review, or simply a suggestion of a topic you would like to see covered

Please send to magazine@sheffieldmegroup.co.uk

Hope you enjoy this magazine - wishing you all a peaceful Autumn and aHappy Halloween!

Becca

(Editor and co-chair)

Events & Activities

You can now register for all our events by emailing

info@sheffieldmegroup.co.uk

Talk from Jon Dale, SOHAS

Thursday 5th October, 2pm

Sheffield Occupational Health Advisory Service (SOHAS) delivers job retention services, providing advice to people who believe their work is being affected by their health to stay in employment.

Jon Dale, SOHAS’s senior adviser will give a presentation on the types of advice and support SOHAS give to patients who have ME, fibromyalgia and long Covid who are struggling to stay at work or return after a period of sickness absence.

Gut Microbes as Cause and Treatment of ME/CFS

Professor Simon Carding & Cinnamon Days CIC

Thursday 16th November, 2pm

Evidence suggests ME/CFS patients have immune abnormalities, including immune deficiency and autoimmunity that may be related to or perhaps even driven by disturbances in the gastrointestinal tract, and its’ vast population of resident microbes (including bacteria, viruses, and fungi) collectively referred to as the intestinal microbiome.

Professor Carding will describe the work he and his team are doing to investigate if and how the intestinal microbiome is altered in people with ME/CFS and how targeting it might be an effective treatment option for ME/CFS.

Delivery Plan consultation

The Dept for Health and Social Care has recently published their draft Delivery Plan for ME/CFS with a consultation period until October 4th 2023.

It is important for as many people as possible to respond to influence the final plan. We are hosting the following online events to help members respond to the consultation.

Thursday 7th September, 5pm

An introduction to the draft DHSC plan. This should last an hour and will be recorded so you can watch it later.

Tuesday 12th Sept, 11am and Thursday 14th Sept, 2pm.

Join us to discuss the consultation - we’ll be offering encouragement & explanations to help you fill it in. It’s a long questionnaire and we will share tips on making it more manageable

Parlons français!

Thursday at 4pm 14th September, 26th October, 30th November

Friendly group that enjoys chatting in French and learning from each other. If you speak or understand conversational French, and you would like to practise speaking or listening in a relaxed environment, you are very welcome to come along! Best suited to intermediate and advanced levels.

Meet-Ups

Come and make new friends at our members’ social groups!

"The meet-ups are always enjoyed by everyone. It's great to be with people in the same situation and, whilst we talk about all manner of things, a lot of useful information is always exchanged."

Cuppa & Chat

Wednesday 4th October, 2pm, and Wednesday 1st

November, 2pm

Come and share a comforting chat over a cuppa!

Crucible Kitchen, Crucible Theatre, 55 Norfolk Street S1 1DA

Wheelchair accessible entrance from Arundel Gate. Soft seating, and quiet during the daytime.

Monthly Mocktails

Monday 2nd October and 6th November, 5.30pm

The Circle, 33 Rockingham Lane S1 4FW

Alcohol-free evening social!

Julie's meet-up

2nd Friday of the month (beginning 8th Sept), 12 noon

Donkey Derby Pub, 405 Sheffield Rd, Chesterfield S41 8JZ

Anne's meet-up

Tuesday 17th October, 11am-12.30pm - The Robin Hood, Millhouses Lane S7 2HB

Wednesday 15th November, 1pm-3.30pm, Waggon and Horses, 57

Abbeydale Road S7 2QQ

Long Covid meet-up

1st Tuesday of the month, 1pm - Oakbrook Coffee House, 147

Oakbrook Road S11 7EB

Art Journaling

2nd Wednesday of the month (begins October 11th), 2-4pm

Art journaling is a fun and uninhibited exploration of creativity - leaving you free to make mistakes, experiment and express your feelings through art. Join us in person or online.

Crafternoon (online)

Last Wednesday of the month, 2pm

Join us on Zoom for a casual arts and crafts drop-in. Bring whatever you're working on - or just come along for some company and inspiration!

Writing Workshop with Berlie Doherty

24th October, 3pm

Join celebrated author Berlie Doherty for a creative writing workshop on the theme ‘fireworks’. Berlie’s workshops are simple to follow and very inspiringregister by emailing info@sheffieldmegroup.co.uk

The VERY short book club

Tuesday 3rd October, 2pm

Tuesday 17th October, 7pm

Very short books can be a great way to enjoy reading while also struggling with symptoms. Please email info@sheffieldmegroup to sign up and find what the club’s first book will be.

Qigong with Orla

Mondays, 3pm, online

Gentle and invigorating movements that bring benefits to the body and the mind. Orla is a Qigong Instructor and Dance Movement Psychotherapist with over 20 years experience. Can be done seated or standing. Please wear loose clothing that allows movement.

Mindfulness with Jane

Mondays,4pm, online

Gently paced sessions with time for processing and reflecting. Mindfulness is the awareness that arises from paying attention, without judgment, to the present moment. It has been shown to help people with a range of health issues by reducing stress, helping people to understand their capabilities and change the way they relate to their symptoms.

Singing with Helen Lyle

1st and 3rd Thursday of the month, 11am

All songs will be taught by ear and you can adapt the level of new learning to suit your energy. There will be songs for many moods and everyone is welcome - no need to think of yourself as 'a singer'. Singing sessions are also open to non-members

Future events - we send out weekly emails to let you know what is coming up. If you would like to receive these emails please contact info@sheffieldmegroup.co.uk

Volunteering

‘Volunteering’ can conjure up images of sorting through books in a charity shop, rattling tins outside supermarkets, or doing so-called ‘fun’ runs. However, volunteering can look like almost anything, and while access to volunteering for disabled people is often difficult, we do things a little differently here.

We have a range of roles on offer including: befriending; admin; or co-hosting support groups but we’re also keen to meet you and help you create your own role. There are many different ways you could contribute and each of you has skills, experience and ideas that we need. We know that most of you need a super flexible commitment, a low-intensity environment or even a space to lie down and rest (yes, we have a camp bed!).

Our staff team not only has personal experience of adapting their own roles around barriers but also the professional experience of coaching others to do so.

We promise to build you a role that celebrates what you can do. Whether you can help once a week or once a year, you will be valued!

If you would like to get involved please contact us by email at volunteer@sheffieldmegroup.co.uk or by phone at 0114 2536700.

DecodeME: New Findings

DecodeME (the world’s largest study of ME/CFS) has just published a research analysis of the questionnaire results of 17,000 people with ME/CFS. Some findings confirm what we have already known – that most people with ME/CFS are women, but what was not clear previously was that women tend to have more additional health conditions.

The analysis also shows that being female, older, and over 10 years from onset makes it more likely that someone is severely affected by their ME/CFS.

What has emerged as a new finding is that people with ME/CFS do not form a single group reporting similar symptoms and additional medical conditions. Instead, participants who had an infection at the start of their ME/CFS reported a different pattern of symptoms and conditions compared to those without an infection.

The Decode ME study aims to create a biobank of people with ME/CFS in order to advance scientific research into the genetic causes of the disease. This is presently the world's largest study on the subject and they are still looking for participants, so please consider taking part.

To get involved you can visit the website: https://www.decodeme.org.uk/ Or for further help contact

info@DecodeME.org.uk or phone 0808 196 8664

DecodeME: Taking Part

Michael J Gransbury

This Summer, I took part in the Decode ME/CFS Study.

After contacting them, I was sent the link to their questionnaire. It was quite long and it took quite some time to give a full account of my illness because I have had severe ME for many years. I didn’t need to fill in the questionnaire all in one go, as there is an option to save your progress. I also had help from my wife so that made things easier.

After filling in the questionnaire, I was accepted into the second stage of the study. This all takes place at home. They sent me a kit through the post to collect a saliva sample; they provided clear instructions (including a link to a video) and prepaid packaging to send back to them. They wanted quite a lot of spit!

Once I had returned my sample, I was sent an email to confirm that they had received it. I then got a further email once they had tested it, thanking me for my participation. Their communication is really good, throughout the whole process.

Care Plans Local update

Sheffield ME/CFS Service have contacted us about their proposed guidance on Health and Social Care planning for patients. About 10 members joined an online discussion – here is what member Janet Hassall fed back. We will be combining this with other contributions, ready for our next meeting with the Sheffield ME/CFS Service. We’ll keep you informed.

What should a Care and Support Plan include?

Diagnosis date

Managing flare-ups

Self-management strategies

A record of the person’s symptoms at the initial assessment

An assessment of the severity of the persons ME/CFS

The impact of ME/CFS on the person’s mobility and daily living

Medications that have been prescribed in Primary Care to treat ME/CFS symptoms and a statement about liaison between the specialist service and Primary Care (integration of services)

Care provided from ME/CFS Service - with a statement of what the service is working towards Other agencies involved – pain clinic, physio, etc – and their liaison with ME Team (working towards)

A statement that the Plan has been developed by a ME/CFS clinician

Supporting letters from ME/CFS Service for benefits, etc.

Key Action points

Statement about future review of the Plan by the ME/CFS Service, to support an assessment of whether the illness is deteriorating, or is stable, and the needs of the patient.

A review of symptom treatment in Primary Care

*

* Mindfulness 3pm * Qigong 4pm * Mindfulness *start dates TBC

noon

Full details of all our events can be found on pages 4 - 8 You can register for any of our events via email. Contact info@sheffieldmegroup.co.uk

Full details of all our events can be found on pages 4 - 8

You can register for any of our events via email.

Sheffie tle specially adapted y ong Covid and similar co in person and different are free and free transport can be provided, although there is a suggested donation of £2 per session.

https://www.sheffieldyogaforme.org.uk

Sheffield Yoga for ME/CFS

Spitting Feathers

By Amy Palmer

What a wonderful term! I first heard the term ‘spitting feathers’ for having a dry mouth when volunteering in Burngreave but as my medications increased over the years it became a day to day saying. 90% of medications cause dry mouth and while it can seem insignificant compared to all the other ailments on the list, it can be the spark that lights a bonfire.

While dry mouth is irritating the biggest problem I have found with it is that the experience stops me sleeping. And if I don’t sleep then I crash more easily and I experience more pain. I always thought that surely drinking water would solve the problem but it never did - this wasn’t thirst after all but an inability to produce saliva.

At first I tried my own version of a home remedy to produce salivagummy sweets (not ideal after your cleaned your teeth) and keep a square of Cadbury’s Dairy Milk next to my bed to smell to make my mouth water. Unfortunately this was also bad for my teeth as inevitably the square of chocolate had disappeared by morning!

After hours of Googling on my phone in the small hours I decided to take action. I didn’t want more pills to counter more side effects but I discovered that an ingredient in chewing gum and some mouthwashes can help prevent dry mouth.

It’s called Xylitol and it’s not in every mouthwash so you need to read the ingredients. The first time I used it I was impressed. It had an almost oily texture that did indeed stop my mouth from getting dry - or at least long enough for me to get to sleep.

Next was the chewing gum, which helped during the day when discomfort at walking around was also exacerbated by my dry mouth and made my mouth taste awful. This worked doubly well as the chewing action also stimulates saliva production.

So, I’m happy to say I’m no longer spitting feathers as I lie on my pillow. I’m glad that this one little change has had such a positive impact on my sleep. If we can’t reduce or eliminate the big symptoms, then at least we can feel a little control over our bodies by tackling those small annoyances.

Write to us!

If you have a symptom that you have had success tackling then please get in contact. You don’t need to be a top journalist. So long as you’re happy to share your ideas, our fab magazine team will do the rest!

magazine@sheffiel dmegroup.co.uk

Xylitol is a food additive that can be bought separately as an alternative to sugar, and is sometimes an ingredient in mouthwash, toothpaste and chewing gum.

Xylitol can have a laxative effect if consumed in large amounts. If you already have gastrointestinal problems, you may have been told to avoid Xylitol. This article is one person’s experience and is not intended to replace medical advice.

Gamechangers

Tips and tricks for managing the conditions

Managing symptoms, doing everyday things, or continuing with hobbies - all these things and more can be incredibly challenging with ME, fibromyalgia or long Covid. But sometimes the little things can make a big difference, things like:

‘One-cup’ kettles

Noise reducing earplugs

Weighted blankets

Putting your car seat to a recline

Using a trolley for support rather than a basket, even for little shops

Members also had the following tips to share...

“Natural Readers text to speech software. You just copy and paste in the text you want it to read, select the voice that you like (I find Gabriel English UK to be the best) and select at what speed you would like to listen. It highlights the words as well so you can read along” - Carolyn www.natural readers.com/online/

“Change up your artistic style? I used to paint animals in a hyper realistic style but it wasn't really my thing. Now it's more loose, non realistic, bit more enjoyable" - Julie

“I started using an aid to put on socks. It helps - when I can remember where I put it!” - Becca

“I treated myself to a pair of these FlexyFoot Comfort Grip Crutches a few months ago, & so wish I’d done this sooner. They are so much better for my wrists & my spine. These have been a game changer for me, as the shock absorbing ferules are fantastic. I call these my Dalek Crutches, as the bottoms resemble the Dalek’s off Dr Who” - Lou.

https://www.flexyfoot.com/flexyfoot-shock-absorbing-crutches

Soul Music

by Carolyn Leary

The idea for this piece started when I saw that Belle and Sebastian were playing in Sheffield in July. Unfortunately I didn’t get to go, but Stuart Murdoch, their co-founder, lead singer and song-writer, has been a fabulous advocate for the ME cause over the years, often playing and contributing to the Scottish #MillionsMissing event. Stuart says: “In my early days when I was very ill with ME I felt like a second-hand citizen, almost like a non-person, invisible”.

Stuart was diagnosed 30 years ago. He says he dropped out of school, out of work and lost friends, which created space for him to write songs and he had something to say. He has learned to pace his life and is now an ambassador for the Open Medicine Foundation, a pioneering ME/CFS research organisation. “The fact is people with ME, for some mysterious reason are not believed.” His song Nobody’s Empire was written when he was going through a relapse.

When my daughter was living with severe ME, she was unable to tolerate listening to music for several years, even newspaper rustling was too much for a while, but as she gradually improved a little, it became a possibility again. My brother, an amateur musician, had the brilliant idea that listening to a single instrument, e.g. piano, would be easier for the brain to process than a band or orchestra, so Ludovico Einaudi became popular, an Italian pianist and composer. You’ll find lots on YouTube and some may be familiar.

Stuart Murdoch

Several years ago, SMEFG set up a singing group run by Helen Lyle and opened it to people beyond Sheffield. Its now a vibrant group, meeting online every other Thursday at 11am, and they learn simple but meaningful songs. It’s very relaxing and sometimes can be emotional. You don’t have to be able to sing! If you’d like to join, please email info@sheffieldmegroup.co.uk and if you’d be interested in an in-person session let us know – some folk with long Covid have been meeting regularly.

I looked online for songs written about chronic illness – one that comes up on several lists is Avril Lavigne’s Head Above Water (she had severe Lyme disease for several years). Lady Gaga, who has talked about living with fibromyalgia and can only perform with the help of a lot of drugs, has written The Cure, but the song that I think fits our group well is You Are Not Alone by Emeli Sandé – I have played it at a couple of our online events.

If you like hearing the stories attached to particular songs, try Soul Music, a Radio 4 series about pieces of music with powerful emotional impact, each episode choosing one iconic songthere’s 186 episodes! You can find the programme on BBC sounds.

Music can be so good for building connections, talking to family and friends, and reappearing in your head when you are least expecting it! We’d love to hear more about any of your favourite tracks and any songs that have special meaning for you, or how you have music in your life? Or, if you have any ideas for some music listening or even playing sessions? Email magazine@sheffieldmegroup.co.uk

Photo of Stuart Murdoch C Amy Hope Dermont, altered and used under license https://creativecommons.org/licenses/by/2.0/legalcode

Time for change . . . New craft idea!

Here's a simple craft to try out, from our Engagement Officer, Pippa! You will need:

2 swatches of fabric

2 different sized circular objects a felt tip pen scissors needle thread a button

Draw around the circular objects with felt tip pen, and cut out. It doesn't matter if it's not perfectly neat!

Sew a running stitch (in-and-out) around the edge of each circle. If you can, sew close to the edge. Leave the ends of the thread out at each end - don't tie it off!

Pull the ends of th thread tight, gathering up the circle into a little pouch. Tie it off a cut the loose end Squash the pouch into a circle, with the pleats in the middle.

Stack the circles on top of one another, and sew or glue them together with a button on top.

And you're done!

Why not try...

embellishing with ribbons and lace adding a safety pin to the back, to make a brooch

using seasonal colours and stringing them together as decorations

Here's some I made earlier! - P

Send your pictures of yours in to be featured in the next issue! Email us at: magazine@sheffieldmegroup.co.uk

Mindful Colouring

Mrs Ute Elliott

With great sadness, we share the news that Mrs Ute Elliott, past Chair of Sheffield ME Group (as Sheffield ME and Fibromyalgia Group was formerly known) has died.

Before developing ME, Ute, who was originally from Germany, taught modernlanguagesatMyersGroveSchoolinSheffield.

After falling ill, Ute was not well enough to return to work, but as her health improved slightly she was desperate for something to occupy her mind, and, wanting to help other people with ME at a time when there was even greater misunderstanding and even fewer resources for ME sufferers than today, she became Chair of Sheffield ME Group whichwasthenbasedattheBladesBusinessCentreonBramallLane.

In 2002 Ute submitted the group’s first ever bid for National Lottery funding-along,detailedandonerousprocessatthetime-whichwas successful. A second National Lottery bid to fund the group for three years, submitted by Ute in 2005, was also successful and the ME group’s headquarters were then able to move to modern facilities, purpose built for the voluntary sector, at The Circle on Rockingham LaneinSheffieldcitycentre,whereitremainstothisday.

During these early years, and without the benefit of social media, Ute setupnumeroussocialeventsandservicestoallowpeoplewithMEto contact one another in order to alleviate the dreadful social isolation andlonelinessassociatedwiththecondition.

She offered a ‘listening ear’ service from her own home in the evenings, something which was physically and emotionally draining, but Ute felt this was a much needed service for sufferers at their lowest ebb with nowhere else to turn. Ute also developed a benefits advice service run by the group to help ME sufferers. She organised drop-in coffee meetings and awareness-raising events throughout Sheffield and organised two conferences a year at The Circle with notable speakers on ME. She built a relationship with the Sheffield NHS CFS/ME service, which meant that the NHS service would signpost newly diagnosed ME sufferers to Sheffield ME Group to take advantage of the Group’s advice and services. She also published the quarterly Sheffield ME Group magazine.

Ute was acutely aware that all the services she had worked so hard to develop for ME sufferers in the Sheffield region could suddenly end if the funding stream stopped - a huge responsibility that falls on the head of every Chair of charitable organisations – and devoted three months every year to write funding applications to dozensoforganisationsandtrusts.

Ute’s efficient, self-assured demeanour could sometimes belie the hugely caring, compassionate person beneath. Since her death was announced on the Sheffield ME and Fibromyalgia Group Facebook page, people who knew her have shared stories of the many times when Ute extended great kindness and compassion to them personally. In spite of considerable struggles with her own health, all of the above was delivered with her great sense of humour. She will be greatly missed.

Rest in peace, Ute.

Membership Info

Sheffield ME and Fibromyalgia Group

0114 253 6700 / 07753 948 186 | info@sheffieldmegroup.co.uk| www.sheffieldmegroup.co.uk

Membership is open to people in South Yorkshire and North Derbyshire living with ME/CFS, fibromyalgia and long Covid. You have the choice between one-off membership, valid for one year, or annual recurring membership. Membership costs £12 per year, or £20 if you choose to add an £8 donation.

Please visit: www.sheffieldmegroup.co.uk/become-a-member Online payment is the preferred method of payment. If you encounter any difficulty or would like to pay via another method, please email us at info@sheffieldmegroup.co.uk or call us on 0114 253 6700 / 07753 948 186 (phone lines are open Mon - Thurs, 11:30am - 3:30pm)

Your membership includes:

Quarterly magazine (by post or email)

Welfare benefits and social care casework support

Wellbeing, creative and social activities, in person and online

Access to our online forum on the website

Access to our members-only secret Facebook group

Invitation to our Christmas party, incl. your family/carers

Involvement in projects with the Group

Help in developing your own activities within the Group

Making a donation

You can find out more about donating at https://www.sheffieldmegroup.co.uk/donate

Next issue: ' cosy '

This issue's theme has been 'change'. Our Winter issue will be themed on 'cosy' - and we'd love to have your contributions on this topic!

Can you share any cosy craft ideas?

What's your favourite way to stay cosy over Autumn and Winter? What does 'cosy' mean to you? Do you have any creative writing, art or photography on the theme of 'cosy'?

Do you have any tips for people whose senses and pain levels are affected by their clothing, or by issues with temperature regulation.

Please send in your submissions by Friday 10th November to magazine@sheffieldmegroup.co.uk

Help us raise money!

As a small charity, every penny counts. You can now help us via birthday giving and crowdfunders on Facebook!

We are also now registered with Easyfundraising! Over 7,000 brands will donate to us when you use Easyfundraising to shop with them –at no extra cost to yourself! All you need to do is sign up and use Easyfundraising when you shop online.

Sign up here: https://bit.ly/SMEFGeasyfund

If you have any fundraising ideas, we would love to hear them! info@sheffieldmegroup.co.uk | 0114 2536700.