## ANNUAL REPORT JAN - DEC 2021 









Registered Charity: 1095416 



## **TABLE OF CONTENTS** 

|**TABLE OF CONTENTS**||
|---|---|
|**THE CHARITY**|**3**|
|Registered ofce & contact details|3|
|Patron|3|
|Objectives|3|
|Trustees|3|
|Associate Trustee|3|
|Employees|3|
|**CHAIR’S REPORT**|**4**|
|**DEVELOPMENT OF OUR GROUP**|**5**|
|**SOCIAL AND WELLBEING ACTIVITIES**|**6**|
|In-person social drop-ins|6|
|Expansion of our online activities programme|6|
|A new Nutrition and Cookery programme|6|
|Feedback form our online activities|7|
|Phone support|7|
|Magazine|8|
|**ENGAGEMENT AND OUTREACH**|**9**|
|Social media|9|
|Website|10|
|E-news|10|
|**WELFARE AND BENEFITS ADVICE**|**11**|
|Overview|11|
|Financial outcomes|11|
|Feedback from benefts clients|11|
|Additional activity|12|
|**EVENTS**|**13**|
|Millions Missing – 12th May 2021|13|
|Marie’s hair-razing fundraising launched 12th May 2021|13|
|Consultation on the NICE draft guideline on long COVID- 23rd September 2021|14|
|AGM - 22nd October 2021|14|
|Christmas social - 10th December 2021|14|
|Online talks and Q&A open to all|14|
|Dr Sanjay Gupta – 13th February 2021|15|
|Cort Johson – 27th May 2021|15|
|Des Quinn – 8th September 2021|15|
|Prof Ron Davis and Janet Dafoe – 11th October 2021|16|
|**MEMBERSHIP**|**17**|
|Overview of our membership|17|
|Fees|17|



1 



|**VOLUNTEERING**|**18**|
|---|---|
|Development in volunteers management|18|
|Estimated volunteer hours 2020|18|
|**GOING FORWARD**|**19**|
|**APPENDICES**|**20**|
|Appendix I: Engagement report for our online activities|20|
|Appendix II: Engagement report of our online talks|22|
|**FINANCIAL STATEMENTS**|**23**|



2 



## **THE CHARITY** 

Registered with the Charity Commission: 1095416 

## **Registered office & contact details** 

- Address: The Circle, 33 Rockingham Lane, Sheffield S1 4FW 

- Website: www.shefeldmegroup.co.uk 

- Email: info@shefeldmegroup.co.uk 

- Telephone: 0114 253 6700 / 07753 948 186 

## **Patron** 

- Berlie Doherty 

## **Objectives** 

- To relieve those suffering from these illnesses variously known as Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) or Post-Viral Fatigue Syndrome (PVFS), Fibromyalgia and long COVID, in particular by the provision of help and assistance through mutual support and information exchange. 

- To educate the general public through the promotion and dissemination of knowledge about ME/CFS/PVFS, Fibromyalgia and long COVID. 

## **Trustees** 

- Simon Briggs 

- Becca Gransbury 

- Beatrice Greenfield (until October 2021) 

- Isabel Hemmings 

- Duraiya Kapasi 

- Carolyn Leary (Chair) 

- Alison Millar 

- Emma Saville 

## **Associate Trustee** 

- Sheila Broadhead (Treasurer) 

## **Employees** 

- Elyane Bardou - Communications & Office Coordinator (until July 2021) and Charity Manager (from July 2021) 

- Ellie Jones and Sarah Smith - Benefits advisers 

3 



## **CHAIR’S REPORT** 

2021 was another exciting year of development  for the charity with growing membership and increasing participation. We noted that it was 20 years since the charity adopted its first formal constitution and decided that was cause for some celebration, while acknowledging the many years the group had been running prior to that date. In October 2021, NICE published the new guideline for ME/CFS which local members had lobbied hard for and had contributed to its development. This provides a sound basis for future discussion with health care professionals. 

This report tells of the wide range of activities run by the group and our ongoing efforts to reach out even further to those isolated by the conditions. We were fortunate to receive further funds from fund-raising efforts and grants in addition to our core National Lottery Community Fund grant enabling us to extend our activities. However, the funds are just one part of the story - we could not have achieved everything described in this report without a huge amount of hard work by members, volunteers, Trustees and  staff. The contributions from everyone are too many to mention but our aim is to run an inclusive group where people can offer to do as much as they feel able and can be supported to do so, while developing skills and fulfilment. 

Delivering services online and our remote way of working (initiated out of necessity in 2020) has proven to be effective and popular with members in 2021 too. Our benefits advice service has become more efficient and effective. Our online activities are well received and reach new people who are housebound and bedbound. We have managed to engage our existing community, and reach out to new members, as well as creating and strengthening partnerships. 

Conscious of the higher engagement and information available to people with ME/CFS compared to people with fibromyalgia, we have tried to engage better with people with fibromyalgia and dedicated guest speaking events to this condition. 

We have also wanted to support local groups to develop in other areas and so have been part of the creation of a UK-wide network of local ME support groups, called the ME Local Network, aiming at increasing networking between local groups, sharing support and best practice around the work we do, joining forces on campaigning issues, and raising the voices of local groups to a national level. 

One thing that has been unique for our group is our ‘Science to your sofa’ series where we have invited very eminent scientists from US and UK to talk directly to those living with the conditions through online talks. We have been truly humbled by the willingness of those working at the highest level of research to share their expertise and time with us, sometimes across challenging time zones. 

We hope you enjoy reading our report and that we meet at some activities or events in 2022. Carolyn Leary, Chair 

4 



## **DEVELOPMENT OF OUR GROUP** 


New funding secured enabled us to provide all our members with varied online wellbeing and social activities, as a way to keep socially, mentally and physically active. We intend to pursue this service delivery after receiving extremely positive feedback from our community. ‘Zo�m ���si��� h��e ���n a ���p���e ga�� �h���er fo� ��, t�e ��l��� li���g �� �he ���k���n�! It’s a ���y ���lu���� wa� ��r pe���� w�o ���l� �av� ���b�e�s ���h ���en���g ���ul�� ��s�i��s �� a ve��� �o j��� i� s��� a�t����i�s ���h a ����al�� �n���ac���� g�o��.’ R. O., member 

This year has also seen the birth of our new befriending scheme, to support the most isolated with friendly weekly or fortnightly phone calls. We recruited and inducted 9 volunteer befrienders, one of whom is a member of our Group. ‘The ���r�e���n� �c�e��is ���d���ul, it ��� m��e � ��si���� diff����ce in �� li��. I’m �o���n� �or���d �� e��h ���l. The ���l� ��e� b���� up ���g ���i�d� �� ti�� �� be��� �n �� ow� - I ca� �p��� d��� wi����t �a�k��� t� a���n� [...] it’s �o�� t� �a�� s��e��� w�o’s �e�� t� �efi��t��� ri�� y��.’ - Kathy, befriendee 

We have worked to develop our links locally and reach out further to people living with the conditions. Our Group achieved status as a community partner of Healthwatch Sheffield, providing more visibility and opportunities for engagement and collaboration. Thanks to the DPO COVID-19 Emergency Fund, our staff team was reinforced with 6 additional hours, used to outreach to people with long COVID. We strengthened our partnership with the ME Service in Sheffield, and put together a bid (as yet unsuccessful) to create a better pathway for people living with long COVID and ME/CFS - with the CFS/ME Service and the AWRC[1] . We will support the implementation of the new NICE guideline for ME/CFS with our local CFS/ME Service and primary care services and work for a better NHS pathway for patients. 

In July 2021, our Group underwent a staff restructuring, appointing our Communications and Office Coordinator to the full time role of Charity Manager, after receiving approval from the National Lottery Community Fund. This enabled our Group to further develop by providing a management infrastructure to support new staff members and volunteers. This relieved our Chair of some of the management duties and hands-on tasks, making this role accessible for people living with the health conditions. 

1 Advanced Wellbeing Research Centre, leading research on long COVID in Sheffield Hallam University 

5 



## **SOCIAL AND WELLBEING ACTIVITIES** 

## **In-person social drop-ins** 

Our members organised 9 in-person meet-ups around Sheffield, reaching 37 beneficiaries. Regular meet-ups were also organised especially for people with long COVID. 

These were organised safely in outdoor venues, and allowed members to get together near their own homes, chat with others who understand these illnesses and gain support and friendship, thereby reducing the isolation these illnesses can cause. 

## **Expansion of our online activities programme** 

With additional funding from Sheffield City Council for our online activities over winter 2021, we provided a packed programme including seated tai chi, mindfulness, qigong, nutrition, singing and gathered feedback from participants afterwards. 


Our lasting partnership with our Qigong instructor Orla O’Connor enabled us to continue the online sessions over Spring and Summer free of charge. In addition, we secured funding from South Yorkshire Community Foundation for our online activities from October 2021 to May 2022. 

At the end of 2021, thanks to our member Marie’s fundraiser, we were able to start our programme of arts workshops with writing, drawing, singing and painting classes. We had surveyed our members throughout Summer via online and paper questionnaire, to shape the programme with their input. 

Our online wellbeing and social group activities attracted a total of 284 registrations throughout the year. See the full engagement report in Appendix I. 

## **A new Nutrition and Cookery programme** 

A survey was sent out to our members to ask for themes of interest, to help us create the programme with our trustee, and registered nutritional therapist, Isabel Hemmings. We linked up with further local professionals to create a diverse programme. The programme was of 7 sessions covering topics such as energy production, healthy fats, managing body weight and reducing food waste. All our 410 members received via email and post write-ups of talks and resources, as well as our Members’ Cookbook, made from our members’ contributions, containing easy nutritional recipes and cooking tips. 


6 



## **Feedback form our online activities** 

We have collected feedback from our members after our winter 2021 programme of online activities, highlighting the following impacts: 

- **Reduced social isolation:** many reported they felt more connected to the community by meeting weekly with others, doing activities as a group and chatting after the sessions 

- **Improved mental health:** weekly activities reduced isolation, while some participants of the mindfulness, qigong and singing sessions reported that these activities had improved their mental health 

- **Increased general activity level** 

- **Easing of symptoms and feeling energised** through qigong, mindfulness and seated tai chi 

- Gave **something to look forward to** each week, and the willingness to try more! 

For all activities the rating was above 4.4/5 and the intention to continue participating was over 90%. 

Quotes about our programme of online activities: 

‘Lot� �� b��efi�s, p��si���l�, an� ��n���l� �op�� ��c� �et���. Im��ov�� ��la���, co����na����, ab����y �o re��� �n� �le��, an� ��l� ��p�i�� �n� �al���. Won���f�� �o b� ���e t� ���ti����te ���h�u� ��v��� to t�a��l.’ _- Tina M., member [about seated tai chi]_ 

‘I lo��� t�� �la���s, t�e� h����d �e ��n��e �y ��m��om�, m� �a�n ���el� ��r� �e��l� ��wa�� l��� f���ow��� a s����on. The� ��v� a��� h���ed �� ��t�e� c��� �it� �h� ���k�o�n ���c� ��s �e�� v��� is����in�, an� he���d �� �a�n��i� s���a� �n���ac����. The ���s��� al�� ��c�e���d �� k�o�l���� in ��� fi�l� (I k�e� f�� le�� b����e), an� ��d� �e ���l �e�t�� �h��ic���y ��� me���l��.’ _- Emma, member of SMEFG [about mindfulness]_ 

‘I en����d ��e Z��m �e�s���� wi�� Or�a. Do�n� �h� �e�t�� ��ve���t� ��s �a�m���.  Ac�i��t�e� ��k� ��is ��� t�e ��l� ��y I �a� �n���ac� ��t� ��op�� �h� �e��l� ��de��t���.’ _- Caroline, member of SMEFG [about qigong]_ 

‘Hel���l �� �ep�� �n���ma���� on ���r��i��. In��ir��� t��� on ��� t� e�� ��re ����t�i�y ���h ���it�� en���y. Go�d ���or����t� �o c��� �bo�� �h� i����s.’ _- Sue, member of SMEFG [about nutrition]_ 

‘Li��d �� mo��, im���v�� �y ��e�t���g, re����d �o��l��e�s, an� ��l��� me ����lo� � ��w ��il�.’ _- Frank, member of SMEFG [about singing]_ 

## **Phone support** 


Our office phone is answered by our Communications Officer/Charity Manager all year round. 

An estimate of 215[2] phone queries were responded to via the office line, concerning our services, membership, the conditions in general, specific events or local services, or simply seeking a listening ear from someone who understands. 

2 We set up a new office phone log at the end of April to record all the queries coming through the office line. From April to December 2021, 161 calls were answered, which gives an estimate of 240 for a whole year. 

7 



Over the winter lockdown, we phoned those members that we had identified as digitally excluded (not having an email account). 30 members without online access were reached by our staff and volunteers to have a chat and see if there is anything they would need. We also posted a letter at the start of the lockdown in January 2021 via post and email, to reassure our members and ask if we could help any further in these difficult times. 

## **Magazine** 

The Group’s magazine was distributed quarterly to all members, via post and email. Over its usual 24 pages, it contained a range of informative and entertaining content, part of which was contributed by our members. Content included: 

- Our Group’s activities 

- Local developments and support services 

- Current research on the health conditions 

- Write-ups of our speaker events 

- Tips to manage symptoms, e.g. pacing 

- Nutrition advice 

- Photos of artwork, poems, stories from members 

- Quiz and jokes 

- Colouring-in 

A very special thank you to Becca Gransbury, our editor, and to all who contributed. 


8 



## **ENGAGEMENT AND OUTREACH** 

In 2021, we made reaching out to people with long COVID one of our priorities. This has involved the whole staff team as well as some trustees. We participated in local forums and meetings on local long COVID support services. The survey we created gathered insightful data about the needs of people with long COVID. As a result, we have developed  information content on long COVID on our website, developed our long COVID Facebook group, and hosted long COVID in-person meet-ups. We have also encouraged our guest speakers to talk about long COVID. We are still actively looking for new ways to reach out to people with long COVID, as well as how to adapt our services better, and have plans to invite guest speakers who specialise in this topic. 


- We have published articles in local and national journals about 

- Accessing benefits and challenging decisions, 

- How our online activities have been a game changer for many of our members, 

- Marie’s fundraiser (see Events section) 

- General introduction to our Group 

In order to improve the engagement of our existing members, we initiated a digital inclusion project, this involved recruiting a student from Sheffield University to coordinate the project via a fully funded placement over Summer. The project aimed at offering IT equipment on extended loan to our members, and providing them with support to use the internet. Members found it helpful to have someone to talk through their IT issues with. 

## **Social media** 


9 



We were, as always, very active on Facebook and Twitter, to keep our community informed both with what we were doing and with news relevant to them. Our Facebook groups are the main platform for peer support used by our members. People can share experiences, ask questions and give tips to others. We have a volunteer moderator in both our Facebook groups. 

All our talks were broadcast live on Zoom and on our Facebook page, and available to watch afterwards through our website and on our YouTube channel. 

Our long COVID Facebook group numbered 81 people by the end of the year. 

## **Website** 


- 9,449 visits (6% more than the previous year) 

- 5,161 unique visitors 

- 8,265 views of our website’s informative content on the health 

conditions, on benefits and social care, and of our educational talks 

- ’Watch previous talks’ is our most visited page with 2,399 views 

## **E-news** 

In 2021, we sent 45 newsletters via email (e-news) to our members and a wider audience of subscribers, to inform them of our activities and to share information and news of the sector. At the end of the year, our mailing list comprised 607 recipients. 

10 



## **WELFARE AND BENEFITS ADVICE** 

## **Overview** 

In 2021, our benefits and social care advisers supported 64 individuals, dealt with over 98 new referrals and responded to over 400 one-off queries. 



## **Financial outcomes** 

- The total benefits arrears paid to members was £66,331.19 

- The total weekly income increase for members was £5,000.08 

## **Feedback from benefits clients** 


11 



_**What difference has this award made to your life?**_ 


At the start of the pandemic, one of our clients was working full-time as a key worker, now she says, ‘I am ���t�� �n �e� �n� ��l� a�l� �� �o t���g� ��ke ���s��a� c���, bu� ���n ��is �� ��ha����n� a�d ����s ti��. I am ����le �� ��r�, d�i��, co�� � �e�l, wa�� f��, co���n���te �� ��y��in� ��r ���g, p�u� m��� ot���s’. 

We supported her to claim disability benefits, and, when her claim was initially denied, to help her challenge this decision. This led to a weekly income increase of £120 and a back pay of £2,700. 

## **Additional activity** 

In addition to the core support service, our team also: 

- Created new connections to raise awareness of our new social care service and created comprehensive content on social care on our website. 

- Ran an ‘Introduction to Welfare Benefits’ training with Doncaster and Bassetlaw trainee GPs 

- Ran two ‘Introduction to Social Care’ sessions with our members 

- Met with the stakeholder engagement manager at IAS to feedback key issues from our clients 

- ● Joined the new local ME network benefits working group, to see how local ME groups around the country can work together to call for changes to the benefits system 

- Attended a stakeholder event for the Health and Disability Green Paper, and submitted a response on behalf of the group 

- Submitted a response to the Work and Pensions Select Committee enquiry into benefits assessments 

- Encouraged our members to submit their own individual experiences to these consultations, and signposted them to relevant resources 

12 



## **EVENTS** 

## **Millions Missing – 12[th] May 2021** 


As the provisional NICE Guideline for ME/CFS was being reviewed, we turned this annual campaigning event into a celebration of our community. 

We organised an online members-only event and invited everyone to share their creativity as well as positive events that had happened since lockdown. 

It was a lovely 2-hour event with 35 people attending on Zoom, and 13 members contributing with photos, readings and testimonies. 

The live stream on our private members Facebook group was very successful with 184 interactions generated. 

The event also marked the launch of Marie’s hair-razing fundraising! 

## **Marie’s hair-razing fundraising launched 12th May 2021** 

We helped our artistic member, Marie, who initiated a head-shaving fundraiser to support our Group, to: 


- organise accessible arts classes of all kinds for our members 

- make an exhibition in Sheffield to showcase the amazing creativity of our members and contribute to raising awareness of the conditions. 

£1,235 were raised from 65 generous donors. 

We have organised a programme of art activities, both online and in person, starting at the end of 2021 and over to 2022. These include drawing, writing, singing, painting and 

photography. Our art exhibition will be organised in 2022. A huge thank you to Marie! 

13 



**Consultation on the NICE draft guideline on long COVID- 23rd September** 

## **2021** 


As a recognised stakeholder in the NICE process, our charity was committed to send a response to the consultation on the new updated draft rapid guideline for the definition, diagnosis, support and management of long COVID. We invited our members to feed in to our official submission with their views and comments. For this purpose, we organised a discussion on Zoom and invited people to send feedback via email or phone call. 18 members engaged in this consultation. 

## **AGM - 22nd October 2021** 

Our AGM was hosted online on Zoom on the 22nd of October. 21 people participated in the Zoom event or watched the YouTube recording. 

## **Christmas social - 10th December 2021** 

Our Christmas social took place online on Zoom, and was a lovely social event. It included a Christmas quiz, a ghost story, a Christmas craft activity, songs and a natter! 48 people registered and 28 made it on Zoom. 

## **Online talks and Q&A open to all** 

We have been very fortunate to be able to organise online talks and Q&A sessions with a number of highly prestigious speakers, people who are leaders in their fields. These have attracted national and international audiences. These talks are organised to share knowledge about the health conditions, and are aiming at: 

- People living with ME/CFS, fibromyalgia and long COVID, their family and carers 

- Health and social care professionals 

- The general public 

Every talk is organised on Zoom with a chat open for people to ask their questions. They are also live streamed on our Facebook page where people can comment and ask their questions live. Each talk is recorded, then uploaded for a later watch on our website and YouTube channel. A write-up of the talk is created by our team and published in our quarterly magazine, to ensure that those members who are not online also have access to the information. 

Our 2021 talks reached over 40,000 people. The full engagement report can be found in Appendix II. 

14 



## **1. Dr Sanjay Gupta – 13th February 2021** 


## _**POTS (a remarkable condition)**_ 

Dr Sanjay Gupta is a Consultant Cardiologist and heart Specialist at York Teaching Hospital. Dr Gupta’s work includes a focus on the diagnosis, management and treatment of Postural Orthostatic Tachycardia Syndrome (POTS) which is something many people from our community live with. This talk had been requested by one of our members. 

## **2. Cort Johson – 27th May 2021** 

## _**Q&A on Fibromyalgia**_ 


Cort Johnson has written over a thousand blogs on ME/CFS and fibromyalgia in the past 15 years, making scientific research accessible to anyone thanks to their comprehensiveness and depth. Cort was elected Prohealth’s Advocate of the Year 2015 and received the Special Services Award from IACFS/ME (International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) in 2016. 

Health Rising is an extremely valuable website providing timely, accurate information to people with chronic fatigue syndrome (ME/CFS) and fibromyalgia. It's been rated as one of the best fibromyalgia blogs. Subscribers of this website include people living with the conditions, as well as doctors and researchers. 

## **3. Des Quinn – 8th September 2021** 


## _**Fundamentals of Fibromyalgia**_ 

Des Quinn is the Chair of FMA UK (Fibromyalgia Action UK) which is a national charity supporting people with fibromyalgia. He gave a presentation on the basics of fibromyalgia and how it affects the large community of people who live with it every day. We dipped into some of the science of fibromyalgia and the research that underpins what we know of the condition today. We also spoke about the charity FMA UK, its mission and its activities. This was a great opportunity for anyone who might wish to be introduced to fibromyalgia, or to gain a 

greater understanding of the condition. 

15 



## **4. Prof Ron Davis and Janet Dafoe – 11th October 2021** 

## _**Progress and Challenges for a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnostic**_ 

Ronald W. Davis, Ph.D., is Professor of Biochemistry and of Genetics at Stanford University School of Medicine, Director of the Stanford Genome Technology Center, and Director of the Chronic Fatigue Syndrome Research Center at Stanford University. Dr. Davis is a member of the National Academy of Sciences. He is devoted to finding a cure for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). His research focuses on exploring causes for ME/CFS and establishing a diagnostic that can be rapidly disseminated. 


16 



## **MEMBERSHIP** 

## **Overview of our membership** 

At the end of 2021, our Group was supporting 411 members, which is 32% more people than the year before. 

91% of our members were living in South Yorkshire or North Derbyshire. 

29% of our members subscribed to a recurring annual membership. 


Our demographics were collected on a voluntary basis and the graphs below show the responses of 289 of our members. We wish to undergo additional outreach work in 2022 to reach more men and more people from diverse ethnicities. 



## **Fees** 

The Group’s membership fees were maintained at £12 per year for 2021. We expect to be able to continue at that level in 2022. 

17 



## **VOLUNTEERING** 

We always welcome new volunteers and encourage members to be involved in our activities as much as they wish and are able to. Our new befriending scheme has attracted 9 more volunteers, some students, some in or out of employment. We recruited 5 additional volunteers to help us create communications resources and phone our members over the winter lockdown. 

## **Development in volunteers management** 

Our staff team has developed a comprehensive induction pack for volunteers, comprising our updated policies and training materials on GDPR, safeguarding, health and safety, equality and diversity, volunteering, and data breach. Our befrienders also received a thorough guidance for volunteer befrienders including information on how to handle difficult conversations and a case study shared by one of our members illustrating the journey of living with ME, through diagnosis and accessing support. 

## **Estimated volunteer hours 2020** 

|**Estimated volunteer hours**|**2020**||||
|---|---|---|---|---|
|**Activity**|**Number**|**Hours**|**Volunteers**|**Total hours**|
|Drop-ins|9|2|1|18|
|Online activities (host or co-host)|92|1|1|92|
|Xmas social|1|3|5|15|
|AGM, Talks & guest events|5|1|3|15|
|Millions Missing|1|2|3|6|
|Members phone round|5|1|5|25|
|Trustees meeting|12|3|8|288|
|Magazine|4|30|3|360|
|Social media admin|150|1|1|150|
|Befriending||||103|
|Additional Trustee involvement||||1000|
|**Total hours**||||**2072**|



18 



## **GOING FORWARD** 

The publication of the new NICE guideline for ME/CFS in October 2021 has given a huge boost to our ability to engage with health care professionals with some clarity about diagnosis and what services should and shouldn’t be offered. We will commit to working with health care services to improve access and quality and relevance of services on behalf of all those living with the conditions. 

We have identified four key areas of focus for our own organisational development that we wish to address in 2022. 

## _**Increasing our team’s capacity further**_ 

Our membership has grown significantly this year and we have developed new successful projects. Our Group has many more ideas to improve our existing projects, and to work more closely with local NHS services on key issues such as the implementation of the new NICE guidelines. In 2022, we would like to secure funding for a new member of staff to support communications, engagement and outreach. We would also like to increase our volunteer capacity, which brings us to the next key issue. 

## _**Creating additional inclusive volunteering opportunities**_ 

Being online means that the previous volunteering opportunities in the office, such as being involved in administration or answering phone queries, which many of our members have done in the past, have become unnecessary. One of our objectives in the next year will be to design more accessible volunteering opportunities for our members, so they can help the Group in various ways, from their own homes. 

## _**Outreach to people with long COVID**_ 

There is an estimate of 10,000 people[3] with long COVID in Sheffield, many of whom will present similar symptoms as ME/CFS and will benefit from getting involved with our community. This year, we have reached 14. There is a need to reach out further to these people. 

## _**Outreach to males, young adults and BAME communities**_ 

Considering the demographics of our membership, we would like to try to reach out to more males and people from diverse backgrounds in the next year. We are also aware that the large majority of our membership is over 40 years old, however these health conditions affect people of any age, so we would like to reach out to young adults too. 

3 Alun Windle, Chief Nurse and Vaccination Lead NHS Sheffield CCG, 11 Aug 2021 

19 



## **APPENDICES** 

## **Appendix I: Engagement report for our online activities** 

|**Activity**|**Number of sessions**|**Engagement**|
|---|---|---|
|Mindfulness|18|44 registrants<br>Up to 24 attendees per session|
|Qigong|24|44 registrants<br>Up to 22 attendees per session|
|Seated Tai Chi|17|42 registrants<br>Up to 16 attendees per session|
|Nutrition|7|32 members registered<br>Up to 22 attendees per sessions|
|Singing|14|18 registrants<br>Up to 7 attendees per session|
|French conversation|9|12 registrants<br>Up to 9 attendees per session|
|Quiz|5|18 registrants<br>Up to 7 attendees per session|
|Online social get together|5|23 registrants<br>Up to 6 attendees per session|
|Writing|2|15 members registered<br>Up to 5 attendees per sessions|
|Drawing|2|18 members registered<br>Up to 7 attendees per sessions|
|Painting|2|18 members registered<br>Up to 7 attendees per sessions|



20 



## **The story of our member, AC** 

## **How online qigong and mindfulness have helped me cope with the lockdown - AC** 

I have felt unsettled and anxious at times during the pandemic and I have found the Mindfulness sessions very helpful indeed, I have felt more relaxed and calmer after the sessions and it has also encouraged me to practise Mindfulness on my own at other times when I have started to feel stressed. I find it very beneficial practising Mindfulness with a group. I also enjoyed the social interaction during the Zoom sessions which I find helpful in reducing feelings of loneliness and isolation which have been worse during the pandemic. I have felt better mentally as a result of Mindfulness, I also think that Mindfulness does help with reduction of pain and fatigue by helping the body and mind to relax more deeply. 

The Qigong sessions helped distract me and help with the feelings of isolation and loneliness which were further increased by lockdown. Helped with having social interaction with people outside my own household. Qigong is something that I wanted to try before but I wasn't able to find a class close enough to manage to attend. I actually feel that I have a life now due to having some Zoom sessions thanks to the Sheffield ME Group. I wasn't able to manage to do the full class, but I did feel that as I was able to do a bit more each week that it was helping me to feel better physically and I found that over time I was starting to feel more relaxed and calmer. Having the class on Zoom was good for me because getting to a face to face class is very problematic and I probably would have found it too difficult to attend. 

21 



## **Appendix II: Engagement report for our online talks** 

|Dr<br>Sanjay<br>Gupta|Cort<br>Johnson|Des<br>Quinn|Prof Ron<br>Davis||
|---|---|---|---|---|
|**117**|**68**|**98**|**261**|**Registrants to the Zoom event**|
|_92%_|_88%_|_94%_|_76%_|_From the UK_|
|_32%_|_51%_|_52%_|_24%_|_From the wider South Yorkshire area_|
|_29%_|_43%_|_30%_|_17%_|_Members of SMEFG_|
|_74%_|_88%_|_86%_|_81%_|_Living with ME/CFS, Fibromyalgia or_<br>_long COVID_|
|_26%_|_21%_|_9%_|_17%_|_Caring for someone who has ME/CFS,_<br>_Fibromyalgia or long COVID symptoms_|
|_11%_|_10%_|_26%_|_18%_|_Working for an organisation who_<br>_supports people with ME/CFS,_<br>_Fibromyalgia or long COVID symptoms_|
|52|31|47|134|People present on the Zoom call|
|**4,600**|**2,600**|**1,100**|**4,800**|**Reach on Facebook4**|
|**20,994**|**479**|**367**|**5,158**|**Views on YouTube/website5**|



> 4 Number of people reached estimated by the Facebook analytics tool from the number of views and interactions with the video. Data collected on 5[th] Oct 2022. 

> 5 Data collected on 5th Oct 2022. 

22 



SHEFFIELD ME GROUP
FINANCIAL STATEMENTS
for the year ended 31 December 2021
(registered Charity Number 1095416)
Contents
Page
Legal information
24
Trustee's report
25-26
Independent examiner's report
27
Receipts and payments account
28
Statement of assets and liabilites
29
Notes to the accounts
30
23

SHEFFIELD ME GROUP
Legal information
Trustees
Carolyn Leary
Simon Briggs
Beatrice Greenf ield
Becca Gransbury
Isabel Hemmings
Duraiya Kapasi
Alison Millar
Emma Saville
Chair
Resigned 28 October 2021
Registered Charity Number
1095416
Principal address
The Circle
33 Rockingham Lane
Sheffield
SI 4FW
Bank
Lloyds TSB
Church Street
Sheff ield
Independent examiner
Craig Williamson
White Rose Accounting for Charities
The Ghyll
Threapland
Aspatria
CA7 2EL
24

SHEFFIELD ME GROUP
Trustees. report
The trustee5 are pleased io present their repofl and financial statements of the charity for the year
ended 3 1 December 2021.
The tru51ees have adopted the provision5 of the Statement of Recommended Practice ISORPI
"Accounting and Reporting by Charities" issued in March 2005. in preparing the annual report and
financial statements of the charity.
Organisation
Sheffield ME Group is a registered charity and is governed by 3 constitution dated 11 October 2001.
35 amended 8 December 2002, and was entered on ihe register ol Ihafities on IS January 2003.
The group is managed by a voluntary commiiiee who are elected at each Annual General Meeting.
Since 2002, part-time staff have been employed160 hour5 totall.
Objects of the charity
The objects of the charity are:_
to relieve those suffering from the illness variously known as Myalgic Encephalomyelitls IMEI,
Chronic Fatigue Syndrome ICFSI or Post-viral F3tiLrue Syndrome IPVFSI and. in particular,
by the provision of help and assistance Ihrough mutual support and information exchange.
io educate the general public through the piomotion and dissemination of knowledge about
M EICFSIPVFS.
We do this through our newsletters. drop-in5, library, IT support. information services, Listening
Ear service, website, nerworking, h05tin8 events and also via media coverage and I￿alsOn with other
voluntary 3nd 51ètuiory organisations. We do not give medical advice nor do we offer Individual
treatment programmes. Ivhere possible we 51gnposi to relevant bodies and resources. bve are a
5elf-help group with finite resources and we are. therefore, restricted to providing the above services.
Public Benefit Statement
Sheffield Id E group Is a self-help group which encoufages and help5 SLlPPO¥t those with Myalgic
Encephalomyelitis IMEI. Chronic Faiigue Syndrome ICFSI and their families and caiers to use
their own resources so ihat rhey are better able to n)3nage the illne55 and the chaiiLtes it has made
to their lives. We do this by providing a wide range ol service5 lailoied to iiieei a variety of needs
and/or circum51ance5 and by raising awareness ol the condition.
The trustees regularly give due consideration to (he Comniission's guidance in deciding iyhat Jctivifies
they should underiake, by reviewing ihe need5 of iheir beneficiaries. by ensiJrin£ that the Ser￿'ICe is
Ivlly inclusive and rhat no delrirvieni or ha¥rii ar15es Iioni the organisation by carryiiig OLII Its acti¥ Ities.
We operate with respect to each individual i)erson aiid ¥ve aii)I to gik'e eiich oiie ai) opportunity to
have their say and to becoiyie ii)ove 1r1vol￿e￿ in ilie 8COLJI). whilsi ￿'0[kIng ￿'IthIn oiir adopted
policies and guidelines.
Our core vèlues are based on our cliarilalile objectives as stated Iii our coiistil(iiioii.
25

SHEFFIELD ME GROUP
Trustees, report Icontinuedl
Reserves policv
Sheffield ME Group aims to hold free reserves 013 monihs running costs. which would equate to
£23,030 based on the 2022 budget. The GfOUP currently holds £21,255 in free reserves, just
£1,775 short of target. Thi5 will be met in 2022.
The reserve fund will be rii)g-lenced to offer protection lo employees, lo meet any OLJtstandinE
overhead costs. contracts and leases plus payment of any other out51anding Iiabilitie5.
Trustee5' responstbilities for the financial statements
The trusrees are responsible for preparin8 financial statements lor each financial period which
sho%w the state of affairs of the Charity and ol the surplu5 or deficit of the Charity for that period.
In preparing those financial statements the trustee5 are required to:_
select suitable accounting policies and apply them consistently
make judgements and estimates that are reasonable and prudent
prepare the financial starements on a going concern basis unless il IS
inappropriate to prestjme that the chartty will continue in business.
The trusiees are responsible for keepinE proper aciounting recoid5 which disclose with reasonable
accuracy at any time the financial position of the Charily and enable the trustees to prepare
financial statements.
The trustees are responsible for safeguarding the assets of the Charity and hence for taking
reasonable steps for the prevention of fraud and other irregularities.
Signed on behalf of the trustees on................
Print name...................
Trusiee
26

SHEFFIELD ME GROUP
Independent examinerfs report to the trustees of
SHEFFIELD ME GROUP
I report on ihe account5 for the year ended 31 December 2021. which are set out on pages 6 to 8.
Respective responsibilities of trustees and examiner
The charity's trustees are responsible for the preparation of the account5. The charity's trustees
consider that an audit is noi required lor this year under section 144121 of the Charities Act 2011 Ilhe
2011 Act) and that an independent examination is needed.
It Is my responsibility to..
examine the accounis under section 145 of the 2011 Aci..
io follow the procedures laid down in the Eeneral Directions given by rhe Charity Commission under
section 14515llbl of the 2011 Act.. and
io state whether parricular matter5 have come to my attention.
Basis of independent examiner's report
My examination was carried out in accordance with the general Directions given by the Charity
Commission. An examination includes a review of the accounting records kept by the charity and a
comparison ol the accounts presented with ih05e records. li a150 includes consideration of anv
unusual items or disclosures In the accounis. and seeking explanations from you as trusiees
concerning any such matters. The procedure5 undertaken do not provide all ihe evidence that ivould
be required In an audit and consequeiitly no opinion Is Eiven as 10 whether the accounts present a
'true and fair view. and the report Is limited ro ihose matters set out in ihe statement beloiv.
Independent examiner's statement
In connecrion with my examination, no maiter has come to my aiiention..
111 which gives me reasonable cause to belieiie ihar In any maierial respect rhe requiieniei)Is'.
q to keep accounting records in accordai)ce wilh seciion 130 of ihe 2011 Act., and
q to prepare accounts vihich accord vlith (he accoui)lii)B records and compl¥ Nvitl) the accounting
requiremenis ol the 2011 Act
have not been met," or
121 to vihich. in m'i opinion. attention should be drawii in order io enable a propèr uiiderstandiiig of
the accouni r
F rpached.
Signed..
Craig Williamson
White Rose Accounting for ChBriiies
The Ghyll
Threap1dnd
Aspatria
CA7 2EL
Oète..
27

SHEFFIELD ME GROUP
Receipts and Payments Accounl
for the year ended 31 December 2021
Llnrestricted
funds
Restricted
fund5
Total 2021
Total 2020
N¢t¢s
Receipts
Grant£ a-.d doryation5
le'"Ibe-s
1.746
42a6
66.832
68.S77
4.246
1.655
71.106
3.867
1.6SS
Total receipt5
5Q92
74 973
Payment5
r- a iotioryal Insurènce
55.242
235
55.242
239
115
57
62
41.339
250
67
233
322
8L2
4tr5
2.172
3.6D6
563
227
317
l.L749
1.085
582
1,575
Jo
!C5
Yer: & J85 check<
57
62
èvel
"uQ-.EE-ra rin8
C￿￿ <*très sac al
rO--e"È*ce. bvofkslOP5 ¢CI I'llies
?reff Ises reni3' èna room hire
2731
5.820
609
714
2,",31
5.82C
609
Sa.. clc
Tf If Jr,one. ntL￿rn￿￿t oryd web
924
92J
£'.&'. or.￿.
93
733
1 104
J3
205
93
P.J.Ic .1 3V¢
36
C-&rge:
107
3?7
'.- er
327
Total paymenis
470
68.687
69,157
54".Ji
Net re£eipt5llpaymentsl foi Ihe yeai
5,522
1201
5,321
D4.drcÈ dr Oli'011202 1
15.", 33
5b 36S
.09b
Cash arsd bank ba13ncÈ at 3111212021
56,164
77,419
28

SHEFFIELD ME GROUP
Statement of assets and liabilities
as at 31 December 2021
2021
2020
Monetary assets
Balai)ce at bank and cash
77,419
72,098
77.419
72,098
2021
2020
Liabilities
Rent and room hire
Independent examination
Post3ge
ICT
Office telephone calls & mobiles
Zoom online IT subscription
Flowers for retiring trustees
1,162
205
394
127
205
399
127
503
330
123
l.S64
2,020
Signed on behalf of the Trustees on...
by
Trustee
PRINT NAME:.......
29

SHEFFIELD ME GROUP
Notes to the accounts
for the year ended 31 December 2021
l Receipts and payments account
8ecau5e the level ol Income expenditure 15 below £250.000. the gioup has opted fof 3CCOUnts
to be prepared on a receipts and paymenis basi5 father than an acc¥uals basis This is in line with
Chariiy Commission suide1￿￿o5 for small groups and 15 seen as more appropr131e lor IhI5 8roup.
Unresiricted
funds
Restricted
funds
Total
2021
2 Granis aThd donations
Grants'.-
ig Loiters Fund
DPO Covid-19 Enier8ency Fund
South Yorkshire CorY)munily Foundation
University of Sb.eff.,eld Ilriternslipl
ZEST smal! granr5 scherne 3ward
Sub total
60.328
2,274
2.480
1.000
750
66.832
60.328
2,274
2,480
1,000
750
66,832
Donations
1.746
1.746
Total grants and don31ions
1.746
66.832
68,577
3 Staff costs
Sièff costs durin8 rhe periDd were...
Gr055 salaries and employerr pen510n
Employer s nÈiiona. InsuraniÈ
55.242
55.242
Number of 5tÈff
3 pari time sLalf
4 Restricted fund5
8313nte at
0110112021
Balance at
3111212021
Receipis
Payments
Big l o'.teri FJnO Loiierv
DPO foyi#.1 9 EmÉrgency Fu-..d
'. I Co.rtci! Comffluniiy COVIO-19 RE5ponse
48.397
5.022
60.3)8
2.274
56.361
7,296
52,i6i
2180
2 180
1.3bO
SoJtr Yo.. ISTI'e CoTrr.Lriti FoJnc3iion
Un
1.000
750
hemc.
750
766
1. )35
liio
I,o-.s
42LI
56.365
68.487
68.687
56. 164
30