My first document

Contents Our Patron is Berlie Doherty

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 supplied by Julie Whitham

Letter from the Editor

I find that summer always brings feelings of curiosity and opening up, (even when struggling with the heat!) so this issue is loosely based around the theme 'explore'. Exploration can mean spending time in nature or discovering new places. It can be developing new skills, listening to a new podcast, or investigating the back of the wardrobe. Sometimes it can simply be resting and exploring a daydream!

This World ME Day (12th May) we held our AGM, enjoying a brilliant poetry reading by Adam Lowe, who also spoke about his experience on the NICE ME/CFS guideline committee. Ellen Roy became one of our trustees (welcome back Ellen!) while trustee Duraiya Kapasi has stepped down - huge thanks to her for all her time and effort. Since the AGM I am pleased to say that I have joined Carolyn Leary as co-chair, after being a trustee for several years, and fellow trustee Alison Millar will be our vice chair. If any readers feel they can spare a few hours a month and become a trustee, please drop us a line at info@sheffieldmegroup.co.uk

You may notice a few changes this issue: a larger font size, and the events calendar has moved to the centre fold - pull out and pin up to make sure you don't miss any activities! And to make sure you make the most of your membership, we’ll be taking a page each issue to tell you a little bit more about one of our services. This month we’re putting our befriending programme in the spotlight. Enjoy!

Events & Activities

Picnic in the Park

Let’s celebrate summer with spending quality time around local parks! Feel free to bring some musical instruments, magazines, crafts or other things along too! We’ll have SMEFG cards or magazines to help you recognise us. No booking, just show up! Please bring your own food and drink

Sunday 9th July, 12.30pm - 2.30pm, Endcliffe Park, Rustlings Road. Meet outside the Park Cafe

Thursday 13th July, 12.30pm - 2.30pm, Norfolk Heritage Park, Guildford Avenue entrance. Meet outside the Centre in the Park

Meet-ups with Anne

Run by Anne Caley (member volunteer)

Tuesday 11 July, 11am - 12.30pm, The Robin Hood, Millhouses Lane S7 2HB

Wednesday 23rd August 1.30pm - 3pm, The Rising Sun, Abbey Lane S11 9ND

Thursday 21st September, 1.30pm to 3pm, The Waggon and Horses, Abbeydale Road South S7 2QQ

"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 about ME."

Long Covid meet-ups

Run by Alison Millar (member volunteer)

First Tuesday of the month, 1pm 5th July, 1st August, 5th September

A friendly and casual meet-up for those suffering with long Covid.

Meet at Oakbrook Coffee House, 147 Oakbrook Road, S11 7EB

The venue has level access, indoor & outdoor seating and there is on-road parking

Parlons français!

Run by Tina (member volunteer)

The first Thursday of every month, at 4pm 6th July, 3rd August, 7th September

Sign up: bit.ly/parlonsfrancais

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.

Are you interested in hosting a meet-up in your local area?

Members' meet-ups are a great way to socialise with other people who understand ME/CFS, fibromyalgia and long Covid.

We can explain what's involved and provide support to find a venue.

Please contact Pippa via email hello@sheffieldmegroup.co.uk

Cuppa & Chat (in-person)

Run by Pippa (staff)

The second Wednesday of every month, at 2pm 12th July, 9th August, 13th September

A great chance to meet a member of the charity's staff, along with other members! Come share your feedback, tips for managing the conditions - and some smiles and laughs over a cup of something tasty. People with the conditions and carers are all welcome.

NEW VENUE: Crucible Kitchen (cafe inside the Crucible Theatre)

55 Norfolk Street, Sheffield S1 1DA

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

Cuppa & Craft (online)

Run by Pippa (staff)

Last Wednesday of every month, at 2pm 26th July, 30th August, 27th September

Sign up: bit.ly/SMEFGCuppaCraft New link, don't forget to sign up!

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

An intrepid explorer tackles the back of her wardrobe

Qigong with Orla

Mondays at 3pm

3rd July, 10th July

(followed by a break over summer)

Sign up: bit.ly/SMEFG-qigong2

This form of movement brings exercises that are gentle and invigorating, that will help the body and mind relax, the muscles let go and build strength while opening the lungs and improve health. It can be done seated or standing. Please wear loose clothing that allows movement.

Orla is a Qigong Instructor and Dance Movement Psychotherapist. She has done Qigong practice for over 20 years and is very passionate about the skill and benefits it brings to the body and mind.

Singing

Run by Helen Lyle

Thursdays at 11am

14th September, 21st September,

28th September

Sign up: bit.ly/SMEFG-singing2

SUMMER BREAK!

Our singing sessions will start up again on Thursday September 14th at 11amregister now to make sure you get a reminder email then.

No need to read music as all songs will be taught by ear and you can adapt the level of new learning to suit your mood and energy. There will be songs for many moods and everyone is welcome - no need to think of yourself as 'a singer'.

Open to all people living with ME/CFS, fibro and/or long Covid across the UK! You don't need to be a member to join the singing group.

Befriending

For many of us becoming unwell with the conditions has drastically changed our social lives and social networks. But that doesn’t mean we’re not still interesting and interested people in need of a good natter. Our befrienders get in touch with our housebound and bedbound members (although all members are welcome) by letter, email or phone call once a week or so to provide a healthy dose of conversation and laughter.

One of the great things about our befriending service is that our members can also join us as befrienders to do some low energy, but high impact volunteering from home. Members make excellent befrienders as they really understand what people are going through.

One of our student befrienders wrote:

“My experience as a befriender has been lovely. It's a simple process but seems to have a big impact. I have been talking to two women on a weekly basis since the start of February and it's been fantastic to develop these professional friendships. The women are clearly so appreciative and that makes me feel great as well. I hope to keep volunteering for as long as is possible.”

We’re looking to welcome a new cohort of befriending volunteers soon so if you are interested in being a befriender or a befriendee then please email amy@sheffieldmegroup.co.uk or call the office between 11.30am and 3.30pm, MondayWednesday. After all, “It’s good to talk”.

The Scenic Route

We asked member Julie Whitham to write about her favourite accessible trail around Sheffield

My favourite trail for ease of use and really lovely scenery is the one that starts at Wetton Mill in the Peak District National Park.

I found this trail again in the ‘Miles without Stiles’ publication which I bought from the Peak District National Park website. The Mill is owned by the National Trust and sits next to the Manifold river, which disappears underground soon after it passes by the Mill.

here is a small café and toilet block t the Mill, which is nice if you don’t ring your own picnic, and it also has arking, but the café owners prefer if you buy something in the shop. We had a picnic sitting on the river ank by the mill before setting off on he trail. We were ambushed by iendly ducks and a cute robin which scoffed some of my pasty.

The actual trail itself used to be a tourist narrow gauge railway line up until the 1930s. Because of this there are no inclines or rough terrain. There are photos of the small locomotives which used to run on the line on the walls in the café at the Mill. Years before I got ill with ME, we regularly used to do this trail on our bicycles as a family in the 1980s and early '90s.

Wheelchair friendly trail along the Manifold river

The scenery on the trail Is lovely and very rural, Because it is meant for walkers and cyclists, the trail is mostly tarmac and so is suitable for pavement scooters and wheelchairs rather than the tougher off-road models.

Not long after you leave the mill you pass Thor’s Cave on the left hand side of the valley. You can stop and read the info boards, which mention Stone Age artefacts found in and around the cave.

A fully fit person could climb up to the cave from the trail but this would be impossible for anyone with any level of ME, due to the steep climb. If you bring binoculars you can see the cave up close.

The trail in the booklet ends at a place called Weag’s bridge, but you could carry on further if you wanted and if your scooter or powerchair has a really good battery range. We went about a mile further on, but I didn't want to risk running out of battery.

A good point to note is that the trail can get busy and so to avoid crowds of walkers, cyclists, etc., I would avoid weekends and school holidays if you can’t really cope with lots of people.

A beautiful trail that I really recommend if possible.

Thor's Cave

A vintage campervan spotted by the trail

Photos supplied by Julie Whitham

Next issue: 'change'

This issue's theme has been 'explore', and we hope you enjoy exploring everything on offer in this magazine! Our Autumn issue will be themed on 'change' - and we'd love to have your contributions on this topic!

What does 'change' mean to you?

How has your condition changed over time, and have you changed how you manage it?

Have you seen any changes in attitudes to our illnesses?

How does the changing weather affect you?

Do you have any creative writing, art or photography on the theme of 'change'?

Please send in your submissions by Monday 18th September to magazine@sheffieldmegroup.co.uk

Sheffie tle specially adapted y ong Covid and similar co in person and different are free and free transport can be provided. However, as we receive no statutory funding, donations of any size are always appreciated, with a suggested donation of £2 per session.

https://www.sheffieldyogaforme.org.uk

Sheffield Yoga for ME/CFS

Role of Microclots

Last year, in early December, we welcomed Dr Caroline Dalton and Distinguished Professor Resia Pretorius (via Zoom) to discuss their research into vascular pathology in post-viral conditions.

Resia Pretorius, of Stellenbosch University in South Africa, spoke first. She gave a detailed and fairly technical overview of her research. Her team discovered that in acute Covid infections and in long Covid, platelets within the plasma were hyperactivated and microclots were present.

Using a fluorescent microscope they tracked a clotting protein called fibrinogen. In the long Covid samples, this protein combined with inflammatory molecules to cause structural changes in the plasma. Platelets and red blood cells then clumped together, creating microclots. Compared to the healthy control group, samples from those with long Covid showed a significant increase in microclots.

Professor Resia Pretorius

Dr Caroline Dalton

Dr Caroline Dalton, Associate Professor of Neuroscience and Genetics at Sheffield Hallam University, undertook similar research using participant questionnaires, symptom tracking, fluorescent microscopy and a mass spectrometer machine called the Cytation 5.

This piece of tech was able to scan samples in 3 dimensions and count the number of microclots per sample. The findings echoed the same results found by the South African teamsignificant increase in microclots in the long Covid samples.

Dr Dalton explained that there was some overlap in her results, which found some microclots in healthy controls, this was put down to participants’ lifestyles (students and teachers) exposing them to Covid. Her study also looked at participants’ ability to take part in social activities. She found this to be a useful marker of how long Covid affected people’s everyday lives. She found a marked difference between the control group and the long Covid group, and this correlated to higher numbers of microclots.

Both labs also looked at ME/CFS samples and discovered the presence of microclots, higher than the control groups, although not at the levels seen with long Covid.

Caroline Dalton's hypothesis is that everyone with long Covid has microclots in the plasma, and with further research she hopes to meet the NICE criteria for diagnosis.

This is just an overview – the talk lasted over an hour and included a great deal of detail. You can watch the talk, including the Q&A, at bit.ly/SMEFGyoutube

Facebook

Chronic Migraines

By Michael J Gransbury

Recently I wrote a question on the SMEFG member’s Facebook group that asked if anyone had chronic migraine. Over 40 members responded and shared their experiences. People had come up with multiple solutions and were trying many things. However I was shocked that many people were suffering in silence and just living with it.

My Experience

I have lived with chronic migraine most of my life - just living with it and taking basic pain killers. It was mixed up with brain fog and sensory overload, and it was difficult to discern where one symptom began and another ended.

After reducing my brain fog significantly earlier in the year by going gluten free, the migraines came to the fore as my primary symptom. So I approached my GP and he tried me on a number of different medications until we found one that worked. It has radically improved my quality of life.

Your GP

My message to the ME and Fibromyalgia community is please don’t live with chronic migraine. You don’t have to. It is something that doctors are very capable of treating as a symptom. So please if you are suffering with chronic migraine go to see your GP as soon as possible.

A Garden of Words

Berlie (our charity patron and award-winning author) recently held a workshop on writing about flowers. She described how we're often immediately struck by their colour, but encouraged an exploration of all the other ways our senses can connect to them:

Observing their shape, like an artist would.

Noting their texture/feel - is it glossy? Fuzzy? Spiky?

The smell - does it remind you of anything else?

Taste! Some flowers like nasturtiums are edible.

Sound, too - how it moves in the wind? Are there insects on it?

Sixth sense - memory/nostalgia. What does it evoke in you?

Attendees then wrote a five minute description of a flower drawing from all these ideas (you can read some on the next page!) Berlie also encouraged everyone to think about a short story involving a gardener. She gave these prompts to think about:

Who is the gardener? Child or adult? You or someone else? Are they even human?

Where (and when) are they? Are they a Victorian 'plant hunter' in the tropics? Are they a future vision of yourself?

What do they want out of their garden? What is their current activity and their goal?

How will they achieve what they want? What are the steps they will have to go on for this?

Why are they doing this? What is the motivation, the purpose that is driving their actions?

Thank you Berlie for a great workshop! For more writing tips, please see Berlie's blog https://berliedoherty.com/category/blog/

Lavender by Sarah Dawson

The lavender stands proud, sways gently and scents wildly for all who seek peace in her company. A bee bumbles, not aware of its energy, its lifespan, without care for its longevity. I’d like to be more Bee. I mostly feel like a been....

It’s not until the sanctuary of Lavender Blue’s delicious reminder that I remember I am a work in progress, just like the bee I have purpose. I can stand (or sit) tall and I sway only slightly….

My Nan taught me to read. I think of her in lavender dreams as I read and reread the page. She was a garden bumbler too. Tall like lavender, her shoes specially made for her ‘feet’s too big’. Her pocket handkerchief scented like the sweetness of sweet peas (her name for me) with warm lingering lavender and the ease of summer days….

Violets by Joy Wright

The violet rows are neat, stretching away from us, vanishing into the brightness of the late summer sun. The reassuring fragrance of each petite blossom fills the air in buffets of warm breeze, a hug passing by. The bees zoom over the rounded growth contentedly whilst the sage green leaves hover below the proud stems, downy soft and velvet-like. Modestly hiding the brittle wood beneath sage skirts as we pass by.

Members' Crafts

Sweet Williams

Mostly he grew veg but right beside the shed glowed pink and velvet red Sweet Williams. His line dies with me but sent across the sea seeds from those flowers spread in an Indiana bed tended by a friend who photographed the blend of singing pink and red because it made her glad and posted it to me. I pinned it by my bed near to one of Dad - twenty years now dead -

beaming by the shed as if he always knew his love and care would grow in everything he bred.

Small selection of items made by Bronnley Cassiday. She adds: "I started as a hobby in April and find it helps relax me. I am in the process of opening an Etsy account under the name Machacreatix"

by Marie King

Exploring

Cinnamon is an important culinary flavouring and used all around the world. The spice is formed from the inner skin of the Cinnamomum tree, a tree which belongs to the laurel family.

Cinnamon has also long been treasured for its medicinal properties, and as far back as Roman times it was used to treat digestive and respiratory ailments. Research has found that Cinnamon has anti-oxidant, anti-inflammatory and anti-microbial properties, which is perhaps why many health benefits have been attributed to it over the years.

Tori'sstore-cupboardtrinchado

Ingredients

2 -3 cans stewed beef

1/2 can of chopped onions (or frozen)

1/4 tsp ground cinnamon

1/8 teaspoon allspice

1/8 tsp ground nutmeg

1/4 tsp paprika/smoked paprika

2 tsp garlic granules

2 bay leaves

1 tbsp worcestershire sauce

2 tsp tomato puree

1tsp sugar

1 beef stock pot

Method

In a large saucepan, fry the onions. Once hot add all the dried spices and bay leaves Cook for a few minutes, and allow to reduce

Add all the remaining ingredients and simmer until sauce is slightly thickened (if too watery add cornflour dissolved in a small amount of water) Serve with your favourite carbschips, mash, sweet potato or bread

- Isabel Hemmings

Recipe supplied by Tori Jackson

Mindful Colouring

Explore Word Search

Search for the words hidden in the puzzle.

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 and social activities, in person and online

Access to our online forum on 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

magazine@sheffieldmegroup.co.uk