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2021-03-31-accounts

Action for M.E. Trustees, report 2020 - 2021 i action f or m.e

Lifeline through lockdown…

The last year has been incredibly tough for everyone worldwide, and we have seen how life has become even harder for people with M.E.

Colleagues have been providing support to people in very distressing and complex situations due to the pandemic; we have been inundated with enquiries and concerns regarding vaccinations; and we have sadly seen an increase in the number of people being diagnosed with M.E. following Long Covid.

Our Crisis, Support and Advocacy Service, launched in April 2020 in direct response to increased need, responded to 1,754 enquiries and offered long term support to 221 people, sometimes over many months. Over this past year, because of the generous input from our supporters and donors, we have significantly grown the service from seven staff members to 10. We know that we have more to do: there are still waiting lists for advocacy support and we must do more to reach currently under-served communities, especially people from Black, Asian and other ethnic minorities.

In contrast, we have heard of young people who are finally able to access education without having to use limited energy on getting into school, and people who have been able to manage some level of employment, as a result of our lives moving more online. While we know that not everyone is able to get online due to symptoms or where M.E. is more severe, it has helped some.

While ensuring we support people now, we have continued to work to secure change for the future. In September 2020, we commenced work on the world’s largest M.E. DNA study, DecodeME. With £3.2 million funding, we are co-leading this study with Prof Chris Ponting and

colleagues at the University of Edinburgh, people with M.E. and carers. The involvement of people with lived experience of M.E. has led to significant changes in the study’s design and we are proud to be a part of this ambitious partnership. We need to recruit 20,000 people with M.E. in the UK, over the age of 16, who meet quite strict research criteria. With recruitment opening in autumn 2021, we have a lot to do and, with the help of the M.E. community, I am confident we will achieve this.

In Spring 2022, we will be reporting the top 10 M.E. clinical research priorities, as identified through wide consultation. Our funding has enabled us to set up a Steering Group of people with M.E., carers and clinicians who have led this M.E./CFS Priority Setting Partnership using a tried and tested methodology pioneered and overseen by the James Lind Alliance. This approach has transformed research in other disease areas and we will work with the community, clinicians, researchers and funders to secure the same for M.E.

New strategy

Throughout this year, we have been working on a new strategy which will provide the framework for all our work. You can read more about this later in the report.

We support people through our services while also lobbying for change. This cannot be done without funding and the skills, expertise and insight that our supporters provide free of charge to help us do more and do better. There are too many to name, but we thank each and every one of you alongside our Board of Trustees and volunteers who generously give their time, energy and expertise.

There are many ways you can get involved and help end the ignorance, injustice and neglect experienced by people with M.E. Here are three ways that you might be able to consider.

We can only do what we do with your support. Thank you.

Sonya Chowdhury (pictured right) Chief Executive Action for M.E.

2 Action for M.E. Trustees report 2020 – 2021

...Leader for change

It has been a difficult year in lots of ways but also one that has provided opportunity and hope. Over the past year, we have changed what we do and how we do it to respond to the changing world around us. We responded robustly to the uncertainties created by the pandemic, refocusing our capacity and resources to increase and expand our support, and also to ensure a good financial position for the future.

Thanks to the work of our team and the incredible support from our donors and community, we have seen the organisation go from strength to strength. We have worked hard to ensure that we continue to increase our funds despite the fundraising environment becoming more challenging for many, not least with regular fundraising opportunities such as runs and marathons being postponed or cancelled as a result of the pandemic.

With the move to digital fundraising, we were delighted to see a number of fundraisers join our Chief Executive in the national 2.6 Campaign in place of the London Marathon. Our income was 26% higher at the end of the financial year than we had budgeted.

As a direct result, we have been able to expand our support services,

recruiting more people to help us provide more hours and be there to support more children, young people, adults and families living with M.E. There were also other very notable successes in the year – not least the launch of DecodeME and the instigation of the M.E./CFS Priority Setting Partnership.

We know, however, there is more to do – demand for our services is higher than we can currently meet, and we are not immune to the challenges of offering continuing support when our own team face the demands of lockdown and home working. We need to address this, but also to decide on our other priorities for the years to come. As a Board of Trustees we decided that, in the light of ongoing pandemic uncertainty, it would be unwise to attempt to define an explicit strategy for the charity for 2021 – 2026. We have, though, agreed some broad areas of direction on which we will focus, and you can read more about these on p 12-13.

Roger Siddle (pictured below) Chair of Board of Trustees Action for M.E.

“We have been able to expand our support services, recruiting more people to help us provide more hours and be there to support more children, young people, adults and families living with M.E.”

Action for M.E. Trustees report 2020 – 2021 3

Contents

Lifeline though lockdown… Leader for change 2
Reports from our Chief Executive and Chair of Board of Trustees
Our year in numbers 5
Improving lives 6
People with M.E. get the information and support they need from us.
We empower and advocate for young people, families and adults living with M.E.
Inspiring action 8
We take action to remedy the ignorance, injustice and neglect still faced by people with M.E.
Investing in change 10
We support people with M.E. to co-lead ground-breaking research
How can we do more and do better over the next fve years? 12
How we raised and spent our income this year 14
Financial review 15
Our people, structure and governance 17
Independent auditor’s report to the Trustees and Members of Action for M.E. 19
Action for M.E. statement of fnancial activities 22
Balance sheet 23
Notes to the accounts 25
Legal and administrative details 36

On the cover (clockwise from top left):

Dr Nina Muirhead presenting at the UK CFS/M.E. Research Collaborative Conference we organised.

11-year-old Sonny set himself the challenge to raise £100 for us by cycling 100 miles in stages, because his mum Emma has M.E. – his final fundraising total was nearly six times that.

Alex shared pictures of herself on a good M.E. day, and a bad M.E. day, for our Big Give Christmas Challenge. “I’m mainly housebound/bedbound, a lot of people don’t understand how one day you can look ‘healthy’ and the next you can look terrible.”

Action for M.E.’s Fundraising Officer Josh took on the Prudential RideLondon Free Cycle challenge in support of his brother, who has M.E.

Bethany shared her story with us for M.E. Awareness Month. She told us: “Action for M.E has made me feel recognised and heard. The stories and research keep me optimistic and aware that I am not alone.”

We co-lead DecodeME, the world’s largest DNA M.E. study, with Prof Chris Ponting , University of Edinburgh.

Naomi works with us to increase understanding of severe M.E., and contributes to our InterAction membership magazine.

4 Action for M.E. Trustees report 2020 – 2021

Our year in numbers

1,754 enquiries responded to through our Crisis, Support & Advocacy Service:

80% increased understanding of their rights and options

78% increased their knowledge of support available

168

239,450 people found information and support on our website

families supported through our services for children and young people:

75% have increased understanding of their rights and options

10,300

downloads of our booklets, factsheets and support resources

75% felt more confident communicating with professionals

214 downloads of our first Learn About M.E. podcast

600 health professionals completed the CPD-accredited M.E. learning module accompanying the podcast

31,308

1,500

is the number of people with M.E. carers and supporters we facilitated to have their say on the draft guideline for M.E from the National Institute for Health and Care Excellence, challenging some areas of the guideline and endorsing others.

sign ups to DecodeME project by March 2021

We responded to two public House of Commons Select Committee enquiries calling for lessons to be learnt from the pandemic. We highlighted the difficulties people experienced in securing food and the inequality experienced by people with a disability during the pandemic.

53 adults with M.E. supported long-term through our Advocacy service:

100% satisfaction with the service received

91% reported improved health and wellbeing

Feedback from clients:

“I felt a weight had been lifted by the advice and support given. Thank you.”

“Before I was completely clueless. I can’t thank you enough. You have put my mind at ease, enabled me with tools to use to manage my condition and how to navigate communication with healthcare professionals. This service is invaluable. Thank you so much.”

£169,710

raised through our Big Give Christmas Challenge – our most successful year ever and we won an award and additional funding for our campaign.

Action for M.E. Trustees report 2020 – 2021 5

People with M.E. get the information and support they need from us.

In April 2020, many people with M.E. found the services and support they had come to rely on thrown into disarray.

In response, we re-shaped all our services into a single Crisis, Support and Advocacy Service, offering information, practical assistance, emotional support, signposting, and UK-wide advocacy.

In the 12 months that followed, people with M.E. called or emailed us for information, emotional support and practical help 1,754 times.

A year on, based on client feedback, we have updated our service name to Information, Support and Advocacy. This reflects the fact that, while we are not a crisis/urgent service, our friendly team is still here for people with M.E. of all ages seeking information, support and signposting.

“I wish I had found you years back. Your service was empathetic and understanding as well as wellinformed, and brilliant at ascertaining the information required to ensure you gave me the right advice. For the first time in my life when discussing this condition, I feel understood.” June 2020

We work with everyone who gets in touch to:

Catherine used our template letter to explain why, because of her M.E., she was eligible for priority access to the Covid-19 vaccine. “When the GP called to discuss my letter, we talked through my experiences of M.E. and impact on daily life. Today I just received my first vaccine! I believe this is a direct result of the letter template you provided. She [also] asked if I was under the CFS clinic […] I will now be asking for a referral into this service. Again, this conversation would never have come about if your letter hadn’t prompted this discussion.”

Nearly a third (31%) of the 1,754 enquiries to our frontline team related to Covid-19; and nearly a third (31%) were prompted by health concerns. Nearly a quarter (23%) of enquiries included questions about applying for welfare benefits, another key challenge facing people with M.E.

Many feel isolated as a result of living with M.E. We can signpost to local support groups and our peer-support forums, while those who become Supporting Members tell us that our membership magazine InterAction helps them feel more connected and less alone.

239,450 people came to our website to find the information they needed; they downloaded factsheets, guides and template letters 10,300 times.

“I was really impressed with how quickly I received a reply and also with the amount of help suggested in the reply. Also, it was nice to have someone suggest pacing myself when reading it. After three years of being made to feel like I am pretending to be ill, it is lovely to know people understand what I am going through.” November 2020

6 Action for M.E. Trustees report 2020 – 2021

We empower and advocate for young people, families and adults living with M.E.

If someone with M.E. needs more detailed, ongoing support, we can refer to our Advocacy and Family Support teams.

“I was supported by a highly skilled advocate who with patience and empathy always helped me to clarify my thinking and to plan things through. With so much foggy brain this has helped immensely. She always sent a clear plan that I could follow broken down in manageable parts and clear goal setting. As the support continued I realised that I felt empowered to continue by myself, but I wouldn’t have felt this way without your support.” January 2021

David got in touch in September. He is mostly housebound with M.E., and sleeps in a damp bedroom at a relative’s house. He approached social services for help, but found they don’t understand M.E. “They just see me being able to walk around when they have met me, not the after effects.”

Our Advocacy team worked with David to plan what needs to be done to enable him to move into private rented accommodation, including effectively communicating his needs to letting agents. When his circumstances changed, we agreed to pause the work until he was ready to pick it up again. All our contact with clients is led by them, and done at their pace.

Young people worked to develop a plan for our Breaking Isolation workshops, funded for three years by Children in Need. Over the year, 24 young people took part.

Over the year, we supported 168 families of children and young people with M.E. to access medical care and education that meets their needs.

“Just to let you know their Education and Healthcare Plan (EHCP) has been submitted, we’re still awaiting to hear. The information you sent through and your help was invaluable so thank you so much. The school said it was the most comprehensive EHCP they had ever seen.” November 2020

“Meeting other young people with M.E. was good and it never felt worrying to be there. It felt good to share stuff about M.E that most “normal people” wouldn’t get.” Workshop participant

What next?

We will:

Overall, 53 adults with M.E. were supported by our Advocacy service over the year.

Action for M.E. Trustees report 2020 – 2021 7

We take action to remedy the ignorance, injustice and neglect still faced by people with M.E.

In November 2020 we were successful in securing Scottish Government Neurological Framework funding for a five month medical education project, in partnership with the ME Association, #MEAction Scotland and Dr Nina Muirhead. The project increased knowledge and understanding of M.E. by health professionals, through dissemination of Dr Muirhead’s CPD-accredited learning module and an accompanying podcast. Over 600 professionals – including 200 from Scotland – completed the module during the duration of the project, and our Learn About M.E. podcast was downloaded 214 times.

Of the health professionals who completed the module:

• 100% reported improvement in patient-centred care and patient pathways.

• 77%

reported increased confidence in treatment and management of M.E.

• 75% reported increased confidence in diagnosis of M.E.

“This module was concise, informative, and provided evidence-based explanations. It has greatly helped my understanding of diagnosis and management of M.E./CFS, and the guidance on post-exertional malaise and chronic post viral fatigue is likely also to be very applicable to patients with Long Covid.” Dr Shaun Peter Qureshi, Edinburgh

We facilitated 1,500 people with M.E., carers and supporters to have their say on National Institute for Health and Care Excellence (NICE)’s draft guideline for diagnosing and managing M.E. via our detailed survey.

We asked which elements of the draft NICE guideline were most important to them; the majority of respondents said it was the clear advice that people with M.E. should not be offered any therapy based on physical activity or exercise (79% of respondents) or cognitive behaviour therapy (CBT) (55%) as a treatment or cure for M.E.

Their voices and experiences drove our consultation response to NICE to challenge areas of the draft guideline and endorse others.

We also:

8 Action for M.E. Trustees report 2020 – 2021

We work alongside people with M.E. to highlight the significant and potentially lasting impact of the pandemic on their lives.

We responded to NICE’s Rapid Response guideline on Long Covid setting out lessons that should be learnt from the experiences of people with M.E.

We worked with #MEAction UK and #MEAction Scotland to produce a survey to gather experiences from those living with M.E. who caught Covid-19. We will be using the results of this survey when lobbying for greater priority for people with M.E. when it comes to Government support and vaccines.

We used our position as a member of the South West Disability Unit to raise the experiences of people with M.E. during the pandemic with the Minister for Disabilities, Justin Tomlinson MP. We have also engaged with him on the upcoming Disability Strategy to express the importance of addressing the inequality experienced by disabled people.

We also:

What next?

We will:

By amplifying the voices and experiences of people with M.E., we increase awareness and reduce stigma.

Over the year, around 31.3 million people had the chance to see our interviews, letters and stories in newspapers and magazines, including online, highlighting the reality of life with M.E. The equivalent advertising value of this – what it would have cost us if we’d paid for similar coverage – was £1,019,110.

“Action for M.E has made me feel recognised and heard. The stories and research keep me optimistic and aware that I am not alone. I love the work they do.” Bethany (pictured), whose story we shared for M.E. Awareness Month

DecodeME was our biggest story of the year. The launch of the world’s largest M.E. DNA study in June was covered in the mainstream and science press, alongside a carefully co-ordinated push on social media.

Action for M.E. Trustees report 2020 – 2021 9

We empower people with M.E. to co-lead ground-breaking research

It was an exciting year for research with the announcement of funding from the Medical Research Council (MRC) and National Institute for Health Research (NIHR) for the world’s largest DNA study, DecodeME.

Since the project started in September, we have been busy recruiting a team to work with us to take the study forward, communicating and engaging with the public and the M.E. community and securing ethical approval. We experienced some delays due to the pandemic and its impact on everything from contracts to securing cardboard boxes – one company bought them all at the beginning of the pandemic, causing a shortage!

We are co-leading the DecodeME partnership with Prof Chris Ponting (MRC Human Genetics Unit, University of Edinburgh) and a fantastic Public and Patient Involvement team. People with M.E. are at the heart of the project and involved in every aspect of its design and delivery.

By year end, more than 31,300 people were receiving regular updates. A majority of these meet the basic eligibility requirements of being 16 years or older and living in the UK with a diagnosis of M.E./CFS. So many people are keen to be involved, which is great, given that we need 20,000 people to take part and we know that not everyone will meet the strict research criteria to enable them to be involved.

£3.2m funding for DecodeME

29,200 people receive regular updates (at time of writing)

91% (26,450) meet minimum requirements to get involved

We received £99,071 funding for a Priority Setting Partnership (PSP) to work collaboratively with people with M.E. and clinicians to identity the top 10 priorities for M.E. research.

“I am the mother and carer of my 22-year old daughter who has very severe M.E. I have years of experience of how the NHS treats people with M.E. – GP services, outpatients’ clinics, inpatient services, clinical commissioning groups – as well as adult social care. I see this PSP as a key step forwards into a more positive future for everyone affected by M.E.” Rachel Elliot, PSP Steering Group

More than 1,560 responses, suggesting 2,000 research ideas, were shared with the PSP for its initial survey in July 2021. These are being sorted and collated before being shared in a second survey, which will ask the M.E. community to prioritise them.

This project, facilitated by non-profit making initiative, the James Lind Alliance, is funded by the NIHR, the Chief Scientist’s Office, Scotland and the MRC. We will work with them to increase funding for research to address the priorities identified.

10 Action for M.E. Trustees report 2020 – 2021

For every £1 we invest in fundraising, we raised more than 10 times that in donations.

Our two funded PhD students completed their second year; both projects experienced delays as a result of the pandemic so will finish up to a year later than planned.

Despite the challenges posed by the pandemic, this year our income exceeded £1 million and we ran our most successful Big Give Christmas Challenge ever.

Joshua Dibble is working with Prof Chris Ponting comparing immune cells (T cells) from people with M.E. with those who don’t.

Marissa Amato is based at the University of Sussex, working with Prof Neil Harrison, using imaging to better understand brain inflammation in people with M.E.

Our research strategy is to increase investment and interest in M.E. research. Both of our PhDs are match-funded: Joshua’s by the Chief Scientist Office and Marissa’s by the University of Sussex. This funding would not have been available without our investment. Additionally, we have attracted two fantastic scientists into the field.

“I would not be working in this field without the opportunity provided by this project. So even if you can only part-fund studentships (and find matching contributions) you will likely be able to draw new researchers to M.E./CFS research.” Joshua Dibble, PhD student we fund

Opportunities to stay in the M.E. field after completing a PhD are virtually non-existent, so we forged a partnership with US charity Solve M.E. to co-fund a trans-Atlantic fellowship. Profs Chris Ponting and Elizabeth Worthey (University of Birmingham, Alabama) will soon be recruiting a fellow who will benefit from working with two fantastic geneticists over a two-year period.

£169,710 raised during Big Give

619 individual donations received

Our campaign ranked 5th out of 764 charities taking part

£2,000 prize awarded by the Big Give for our campaign

In our five year strategy we committed to investing in the futures of children and young people with M.E. by increasing volunteer opportunities to develop new and existing skills.

We brought more volunteer peer-moderators into our young person’s online forum. And with funding from Children in Need, we launched our three-year Breaking Isolation project in October aimed at decreasing isolation, increasing self-esteem and building positive relationships for young people with M.E.

This included establishing a steering group of five young people with M.E. to lead the design of the project and ensure it is accessible. One of the group co-facilitated the resulting workshops, too.

“Thank you so much for today’s session, it helped me in so many ways and I’ve felt happier than I have in a long time.” Breaking Isolation workshop participant

What next?

We will:

Action for M.E. Trustees report 2020 – 2021 11

Improving lives, inspiring action and investing in change: how can we do more and do better over the next five years?

Urgent action is needed to improve the lives of 250,000 children and adults with M.E. and their families also impacted by this disabling neurological illness.

M.E. has left hundreds of thousands of children and adults in the UK in lockdown for years, even decades. With quality of life worse than for those with congestive heart failure and other chronic diseases, and poor access to health, education and financial support available, it is sadly not surprising that the risk of suicide is six times higher than in the general population. Alongside the chronic, disabling symptoms of this neurological disease, people with M.E. tell us that isolation has a huge impact.

Over the past five years, we have taken action to end the ignorance, injustice and neglect experienced by over 250,000 children and young people in the UK – and there is still much more to do. We will keep working collaboratively with others to tackle the devastating issues experienced by people globally.

We will be announcing our transformative plans in autumn 2021. The following will give you a flavour of some of the discussions we have had as a team, with Trustees and partners, and colleagues in the M.E. community.

We will do more

We are a charity that punches above its weight but we do not have the level of resources to achieve the scale of change needed. We will need to be focused and determined in our new five-year plans. We have asked ourselves: what is important and urgent? What can create the level of transformation that is needed?

Research underpins knowledge and will lead to treatments. Support services improve people’s health and wellbeing. Medical education reduces the stigma and disbelief people experience from professionals and ensures access to better support and care. These three universal areas affect everyone, and will be the focus of all our activities over the next five years.

Improving lives: health

Accessing key information, reassurance and useful

resources, new users of our website increased by 60% from April 2016 to March 2021. Over the same period, we supported 43% more people by phone and email. We will continue to be here for those that need it most, and increase access for currently underserved communities, especially those from Black, Asian and other minority ethnic groups.

At the time of going to print, we are exploring a potential merger with the ME Trust. Both Action for M.E. and The ME Trust are frustrated by the considerable lack of provision for people with M.E. with a postcode lottery in access to specialist services and huge variability between them. There is simply not enough support for children and adults with M.E. now, let alone with an increase in diagnoses following Covid-19.

In response to this public health crisis and gaps in existing service provision for people with post-viral syndromes like M.E./CFS, a merger would allow us to combine the power of our organisations and strengthen the services we offer to people with M.E.

We will scale up the current clinician-led, holistic health and wellbeing support currently delivered by the ME Trust to fill the gaps more quickly.

July 2018 client, when we launched our pilot regional advocacy service

12 Action for M.E. Trustees report 2020 – 2021

Investing in change: research

In 2016, we organised the third annual UK CFS/M.E. Research Collaborative (CMRC) conference, releasing the funding report showing that investment in M.E. research represents just 0.02% of all active grants given by UK mainstream funding agencies. The situation remains critical.

Transformation in research will not only lead to greater understanding and potential treatments but also directly challenge the stigma that still exists. We are exploring some exciting new developments and will share these later in 2021.

Alongside delivering the world’s largest DNA study through DecodeME, we are working collaboratively to progress the priorities identified by people with M.E. and clinicians through the Priority Setting Partnership (PSP) that we are currently funded to deliver. We will continue to support the CMRC to secure increased funding for biomedical research while also seeking alternative ways to transform the research landscape. We will invest in bringing new researchers into the field through PhD studentships and Fellowships.

We will do better

What will support and services look for people with M.E. by the year 2027? The incoming NICE guideline, the potential merger between Action for M.E. and the ME Trust, and the investments being made in research offer us the opportunity to significantly influence this, led by people with M.E. in everything we do.

Over the next five years, it is our aim that our holistic services will facilitate improved access to health, support and advocacy services for children and adults with M.E., their families and those working with them, in a way we can measure and constantly strive to improve on. GPs will have increased understanding of M.E. and better recognise what helps and what harms their patients. There will be a roust research programme in place for one or more of the top ten priorities identified by people with M.E. through the PSP.

People with M.E. deserve better, and we will continue to work together with you and others who share our values and ambitions to achieve this.

Sian Leary, PSP Steering Group

Inspiring action: medical education

In October 2018, we worked with Forward-ME to co-host a busy exhibition stand and sold-out workshop on diagnosis, treatment and management at the Royal College of GPs’ annual conference. Now we are delivering a range of medical education activities, working in collaboration with other charities and the Doctors with M.E. campaign group to promote Dr Nina Muirhead’s highly rated learning module on M.E., and produce our Learn about M.E. podcast.

Joan Crawford, Counselling Psychologist

With expert input from our Medical Advisor, Dr David Strain (appointed July 2021), Senior Clinical Lecturer at the University of Exeter Medical School and Lead for the British Medical Association Covid-19 response team, we are exploring how to do more. When the 2021 NICE guideline is published, reflecting good-quality published evidence and patient experience, we will support its implementation as part of Forward-ME, the body which brings together most of the UK M.E. charities.

How we raised and spent our income this year

In our strategy, we promise to continue to strengthen our financial position and achieve the levels of income and efficiency we need to deliver the promises we make to people affected by M.E.

Our recorded total income (see bar chart below) for the year was £1,192,197, up 26% from the previous year. This is largely due to a record-breaking Christmas Big Give Challenge, increased success with trust applications and a number of legacies received during the year.

Overall expenditure was £832,594, a decrease of 16% from the previous year as a result of restructuring the charity in response to the Coronavirus pandemic and increased diligence in managing our resources during a time of such unprecedented global uncertainty. The net result is an overall surplus of £359,533. The charity ended the year with the equivalent of 16.6 months unrestricted operating costs in reserves. The Action for M.E. policy to is to hold four to six months of unrestricted operating costs. The additional reserves have been designated to invest in a transformative new strategy from 2022.

In our strategy, we promise to raise £3 to £5 for every pound we spend on fundraising, growing our income streams to deliver more services and support, and greater change.

During 2020 – 2021, we raised £10.37 for every £1 invested in fundraising.

----- Start of picture text -----
£400,000
£300,000
£200,000
£100,000
£0
Trusts and companiesDonations and appeals LegaciesTax recoverableGifts in kindGrant incomeOther trading activitiesIncoming resources
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In our strategy, we promised to ensure that our organisation is as efficient and responsive as it can be.

This year we spent 60% of our income on charitable activities; including our one-to-one information and support services, peer support for adults and young people, our campaigning and influencing work, and our investment in collaborative biomedical research. This is down from 89% in the previous year. We reduced costs at the onset of the Covid-19 pandemic and then we were fortunate in ending the year with substantially higher income. So we were able to designate more than the additional income to spend on increasing services and research as part of our new strategic plan.

This year, we spent:

£462,196 on our information, advocacy and peer support services for adults, young people and families with M.E.

£106,296 on our campaigning and influencing work.

£148,293 on our investment in collaborative biomedical research.

£115,809 on fundraising (cost of generating voluntary income at £114,849, plus goods and trading at £960).

To carry out all our activities effectively, we need committed and dedicated staff who bring the right skills, knowledge and experience to every area of our work. That’s why almost three quarters (73%) of our total gross expenditure is on staff salaries (including employer National Insurance and pension contributions).

14 Action for M.E. Trustees report 2020 – 2021

Financial review

We remain the only M.E. charity in the UK providing support to both adults and children. As the likely impact of the Coronavirus pandemic became apparent at the start of financial year, the board of Trustees undertook a full budget re-forecast in April 2020 and significantly reduced the income forecast. This re-forecast was based on the vast majority of community fundraising events (walks, marathons and cycling) being cancelled and some trusts understandably refocusing support to mitigate the effects of the pandemic. We also anticipated a significant drop in donations and membership subscriptions as many people were placed on furlough or reduced their individual giving. To ensure that we could continue to provide support to people with M.E. now and in the future, including handling a 30% rise in requests for support in April and May 2020, we restructured quickly from 1 April and reduced our staff team by 40% through furlough and not replacing vacant posts. In June 2020, we concluded a redundancy process that removed six permanent posts from the charity.

Thankfully, due to a phenomenal fundraising effort by our staff team and ongoing support from the M.E. community, we have seen our income increase by 26% compared to the previous year, achieving well over £1million in income together with a sound underlying financial performance, ending the year with a surplus of £359,533. We increased our digital fundraising activities and re-focused our trust fundraising work to make up for the predicted shortfall in community fundraising income. There are no contingent assets to report for the financial year 2020 – 2021. During the year the charity has been advised of a number of legacies and has received significant legacy income. The value of some legacies that are dependent on the sale of an estate could not be estimated within the accounting period and will be

recognised as income in the financial year they become certain.

This year’s Big Give Christmas Challenge proved to be our most successful campaign ever, raising almost £170,000 to support our vital work to end the ignorance, injustice and neglect experienced by people with M.E. Our campaign was awarded second place in the Big Give awards and as a result we received an additional £2,000 towards our work.

Overall expenditure was £832,594, a decrease of 16% from 2019 – 2020. Between April and June 2020, as stated above we restructured as a result of the Covid-19 pandemic, reducing our staff team by 40%. The Board have approved increased investment in designated reserves to support our new strategy from 2022 and to ensure the charity retains a robust financial position given the ongoing uncertainties related to the pandemic. At year end, general funds were £268,050 (up £48,405). In addition the charity had designated funds of £340,000 (up £250,000). Restricted funds were £277,465 (up £61,128) which will be expended over the course of the next year on service delivery, biomedical PhDs and the Clare Francis Research Fellowship. We continue to monitor our level of reserves to ensure we can maximise the work we do while ensuring the charity has a strong medium-term financial position.

We aim to raise £3 to £5 for every pound we spend on fundraising, to spend delivering our services and support. During 2020 – 2021, thanks to reduced costs, better-thanexpected income and effective team working, we raised £10.37 for every £1 invested in fundraising (up from £6.91 last financial year).

Balance sheet

The surplus realised this year has increased our accumulated funds and cash reserves at the year end.

Funding sources

The principal funding sources for Action for M.E. are charitable trusts, legacy giving, community fundraising and events, Supporting Membership income, and individual gifts. Other funding sources include Gift Aid, Christmas card sales, raffles and other trading.

Despite having a diverse and broad funding base, we anticipate a challenging year of fundraising in 2021 – 2022 as the full economic impact of Covid-19 is felt across the sector and beyond. This year, we are enormously grateful for support from The Masonic Charitable Foundation, Scottish Government, John Swire (1989) Charitable Trust, Philip King Charitable Trust, the De Laszlo Foundation, the Garfield Weston Foundation, Sir James Reckitt Charity, The James Tudor Foundation, The Robert McAlpine Foundation and Eveson Charitable Trust.

The Bank of Scotland Foundation generously supported our Crisis, Support and Advocacy service in Scotland.

Funding from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund, helped us to provide support to people with M.E. throughout the UK in desperate need through the pandemic. Thank you to the Government for making this possible.

We also thank Pears Foundation for funding the extension of our advocacy service as part of the Government’s £750m charities package, granted through Pears Foundation’s trusted, long-term partners to ensure funding gets to frontline organisations and their communities.

Action for M.E. Trustees report 2020 – 2021 15

Financial review

Investment policy

Aside from retaining a prudent amount in reserves each year, most of the charity’s funds are spent in the short term so there are few funds for long-term investment. During the financial year 2020 – 21, given the significant designated reserves position the charity invested £50,000 in the M&G Charibond fund following a process of due diligence. The charity has an investment policy which currently uses the COIF Charities Investment Fund to provide a short term interest-bearing account that optimises the balance between flexibility and rate of return, and is exploring ways of improving the return on its cash resources.

Reserves policy

The current policy is to maintain the level of ‘free’ (unrestricted) funds at no less than four times, and no more than six times, the monthly unrestricted running costs of the charity. Previously, our policy was to hold three to five months of unrestricted reserves but this was increased in February 2021 in light of the economic uncertainty related to the pandemic. The charity ended the financial year with 7.3 months of unrestricted reserves based on an unrestricted monthly expenditure of £36,657.

Grant-making policy

This policy sets the criteria and rules for making grants. This is reviewed annually and grants are restricted to the funding of medical research.

Statement of Trustees’ responsibilities

The Trustees are responsible for preparing the Trustees’ annual report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice). Company and charity law requires the Trustees to prepare financial statements for each financial year.

Under company law, the Trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources, including its income and expenditure, of the charity for the year.

In preparing those financial statements the Trustees are required to:

The Trustees are responsible for keeping adequate and proper accounting records that are sufficient to show and explain the charity’s transactions. They must disclose, with reasonable accuracy, at any time, the financial position of the charity and enable them to ensure that the financial statements comply with the Charities and Trustee Investment (Scotland) Act 2005, regulation 8 of the Charities Accounts (Scotland) Regulations 2006 (as amended) and with the requirements of the Companies Act 2006.

They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. The Trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charity’s website, the Online M.E. Centre.

Legislation in the United Kingdom governing the preparation and dissemination of the financial statements and other information included in annual reports may differ from legislation in other jurisdictions.

Auditor

Moore (previously known as Moore– Stephens) was re-appointed as our auditor at the 2020 Annual General Meeting.

Provision of information to Auditor

So far as each of the Trustees is aware at the time the report is approved, there is no relevant audit information of which the company’s auditor is unaware, and the Trustees have taken all steps that they ought to have taken to make themselves aware of any relevant audit information and to establish that the auditor is aware of that information.

Small company provisions

This report has been prepared in accordance with the special provisions for small companies under Part 15 of the Companies Act 2006.

Roger Siddle Chair of Board of Trustees and Directors

Philip Marsden Director and Treasurer

Approved by the Board of Trustees and signed on its behalf on 31 August 2021

16 Action for M.E. Trustees report 2020 – 2021

Our people, structure and governance

Public benefit

The Trustees confirm that they have complied with the duty in the Charities Act 2011 to have due regard to public benefit guidance published by the Charity Commission. The annual report contains a fuller description of the public benefit that the charity provides on pages 2 to 14.

Trustees

The Trustees, for the purposes of Charity law and under the Company’s Articles, are known as members of the Board of Trustees. Under the requirements of the Memorandum and Articles of Association, the members of the Board of Trustees are elected to serve for a period of three years, after which they must be re-elected at the next Annual General Meeting. Trustees can be elected for two three-year terms with the potential for an additional, exceptional, term. As the charity is also a Company Limited by Guarantee, the Trustees are also Directors of the Company.

The Board of Trustees of Action for M.E. meets quarterly with the Chief Executive and relevant staff to exercise corporate governance, to give strategic direction, and to manage the performance and achievement of corporate objectives. The Board also exercises fiscal oversight and takes the lead on strategic risk management. All Trustees receive comprehensive monthly financial management reports with a commentary by the Finance and Accounts Officer.

Day-to-day operations are overseen by the Operations Director, whose quarterly reports to the Board include a report against key performance indicators identified in our high level delivery plan.

Our committees

Four sub-committees, established as part of the Board, operate according to clearly defined terms of reference. These committees hold delegated authority, acting as a resource to the Chief Executive and staff team, and make recommendations to the Board. They are made up of Trustees, staff and volunteers from outside the organisation, including our Supporting Membership.

.

All staff members, including the Chief Executive, have performance targets that link directly to the charity’s strategic objectives. Progress against these is monitored through regular one-to-one meetings and an annual performance review. An annual outcomes summary is provided to the Board to assist with performance management responsibilities. All Trustees give their time voluntarily and receive no benefits from the charity. Any expenses reclaimed from the charity are set out in the notes to the accounts.

The Trustees aim to ensure that we have all the necessary skill-sets on the Board, and regularly review its constituency. Trustees are recruited by advertising openly, or through targeted recruitment if there is a skill that would be beneficial to the Board and that the charity is missing. We aim to have a minimum of 51% of Trustees on our Board who have direct experience of M.E.

Supporting Members vote on new appointments and the re-election of existing Trustees, with results subsequently confirmed at our Annual General Meeting (held this year in October 2020). Each new Trustee receives a full induction and has the opportunity to be paired with a ‘buddy’ for the first year on the Board, plus access to ongoing training.

Chief Executive

The Chief Executive is responsible for setting the strategic direction for the charity with the Trustees, leading its implementation, and holds delegated financial authority within parameters set out by our financial controls.

Collaborative partners

By working collaboratively with others who share our values, we can be more effective in achieving our aims and improving the lives of children, young people and adults with M.E. This includes other M.E. charities and patient organisations, health, social care and education professionals, government and senior officials, and other decision-makers. As a member of a number of organisations and alliances, including Forward M.E., Advice Centres for Avon, Disability Rights UK, Health Conditions in Schools Alliance and the Disability Benefits Consortium, we continue to build capacity, reach more people, and achieve more by working in partnership to achieve common goals.

Action for M.E. Trustees report 2020 – 2021 17

Our people, structure and governance

We also provide secretariat support to the UK CFS/M.E. Research Collaborative, which led to the establishment of the M.E./CFS Biomedical Partnership, the group leading DecodeME (see p10).

Governing document

The organisation is a charitable company limited by guarantee and is a registered charity in England and Wales, and in Scotland, with further details provided on p 35. The Company was established under a Memorandum of Association which established the objects and powers of the charitable company and is governed under its Articles of Association. In the event of the Company being wound up members are required to contribute an amount not exceeding £1.

Fundraising policy

Action for M.E. is regulated by the Fundraising Standards Board. Our approach to fundraising is set out in our fundraising policy which is reviewed annually by Trustees. The charity primarily fundraises from philanthropic sources (eg. grant giving bodies and individual donors) and fundraising events.

The charity recognises the need to conduct its fundraising within the context of recognised standards set out in the Institute of Fundraising’s Code of Fundraising Practice, the Data Protection Act 1998/ UKGDPR2021 and the CAP Code (Committee of Advertising Practice). We do not employ external professional fundraisers or companies.

Our fundraising policy stresses the critical importance that no individual should use their position in Action for M.E. for personal gain, or to benefit others at the expense of the charity, our mission, or our reputation. It sets out that individuals must not act in any way that could be reasonably

seen by others as compromising the independence and integrity of the charity; and that all activities must be carried out with honesty and integrity, with employees never knowingly misleading supporters. Any confidential information obtained must always be protected, and the trust of our supporters must not be violated. The policy also sets out the way in which we deal with fundraising complaints.

Risk

The Operations Director and the Chief Executive have been responsible for the Risk Register, which is reviewed regularly by the Audit, Finance and Fundraising Committee and annually by the Board. Risks are categorised in a way that enables us to see the cumulative impact of risks and ensure that we take action to protect the quality of our work, reputation and income.

For example, by closely monitoring our income, with monthly reviews and reports to Trustees, with actions identified to minimise expenditure and increase income, we mitigate the risk that our income falls below projections. Safeguarding training covering both vulnerable adults and young people is included within the organisational induction policy, with refresher training delivered annually.

To ensure good governance in light of our projected drop in income as a result of Covid-19, we made a serious incident report to the Charity Commission on 23 March 2020 (the date was mistakenly given as April 2020 in last year’s report). While we took immediate action to record this incident, the Commission later decided charities were not required to refer incidents such as this if related to the pandemic. As serious incident reports are not deleted, ours stands despite this change from the Commission.

18 Action for M.E. Trustees report 2020 – 2021

Independent Auditor’s report to the Members and Trustees of Action for M.E.

Opinion

We have audited the financial statements of Action for M.E. (the ‘charitable company’) for the year ended 31 March 2021 which comprise statement of financial activities, the balance sheet, the cash flow statement and notes to the financial statements, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including FRS 102 “The Financial Reporting Standard applicable in the UK and Republic of Ireland” (United Kingdom Generally Accepted Accounting Practice).

In our opinion the financial statements:

Basis for opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditor’s responsibilities for the audit of the financial statements section of our report. We are independent of the charitable company in accordance with the ethical requirements that are

relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard, and we have fulfilled our ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our audit opinion.

Conclusions relating to going concern

In auditing the financial statements, we have concluded that the directors’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate.

Based on the work we have

performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the company’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

Our responsibilities and the responsibilities of the directors with respect to going concern are described in the relevant sections of this report.

Other information

The Trustees are responsible for the other information. The other information comprises the information included in the annual report, other than the financial statements and our auditor’s report thereon. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.

In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial

statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether there is a material misstatement in the financial statements or a material misstatement of the other information. If, based on the work we have performed, we conclude that there is a material misstatement of this other

information, we are required to report that fact.

We have nothing to report in this regard.

Opinions on other matters prescribed by the Companies Act 2006

In our opinion, based on the work undertaken in the course of the audit:

Matters on which we are required to report by exception

In the light of the knowledge and understanding of the charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the Trustees’ report. We have nothing to report in respect of the following matters where the Companies Act 2006, the Charities Act 2011 and the Charities Accounts (Scotland) Regulations 2006 (as amended) require us to report to you if, in our opinion:

Action for M.E. Trustees report 2020 – 2021 19

not visited by us; or

Responsibilities of Trustees

As explained more fully in the Trustees’ responsibilities Statement set out on page 16 , the Trustees are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the Trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

In preparing the financial statements, the Trustees are responsible for assessing the charitable company’s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the Trustees either intend to liquidate the charitable company or to cease operations, or have no realistic alternative but to do so.

Auditor’s responsibilities for the audit of the financial statements Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor’s report that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic

decisions of users taken on the basis of these financial statements.

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:

Explanation as to what extent the audit was considered capable of detecting irregularities, including fraud

The objectives of our audit in respect of fraud, are; to identify and assess the risks of material misstatement of the financial statements due to fraud; to obtain sufficient appropriate audit evidence regarding the assessed risks of material misstatement due to fraud, through designing and implementing appropriate responses to those assessed risks; and to respond appropriately to instances of fraud or suspected fraud identified during the audit. However, the primary responsibility for the prevention and detection of fraud rests with both management and those charged with governance of the charitable company.

Our approach was as follows:

As part of an audit in accordance with ISAs (UK) we exercise professional judgement and maintain professional scepticism throughout the audit. We also:

• Identify and assess the risks of material misstatement of the financial statements, whether due to fraud or error, design and perform audit procedures responsive to those risks, and obtain audit evidence that is sufficient and appropriate to provide a basis for our opinion. The risk of not detecting a material misstatement resulting from fraud is higher than for one resulting from error, as fraud may involve collusion, forgery, intentional omissions, misrepresentations, or the override of internal control.

20 Action for M.E. Trustees report 2020 – 2021

disclosures in the financial

statements or, if such disclosures are inadequate, to modify our opinion. Our conclusions are based on the audit evidence obtained up to the date of our auditor’s report. However, future events or conditions may cause the charitable company to cease to continue as a going concern.

We communicate with those charged with governance regarding, among other matters, the planned scope and timing of the audit and significant audit findings, including any significant deficiencies in internal control that we identify during our audit.

A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Councils website at: www.frc.org.uk/ auditorsresponsibilities. This description forms part of our auditor’s report.

Use of our report

This report is made solely to the charitable company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006 and to the charity’s Trustees, as a body, in accordance with Chapter 3 of Part 8 of the Charities Act 2011 and regulations made under section 154 of that Act, and in accordance with Section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 and regulations made under section 44 of that Act. Our audit work has been undertaken so that we might state to the charitable company’s members and the charity’s Trustees those matters we are required to state to them in an

auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charitable company, the charitable company’s members as a body, and its Trustees as a body, for our audit work, for this report, or for the opinions we have formed.

Mark Powell, Senior Statutory Auditor For and on behalf of Moore, Statutory Auditor

Moore is eligible to act as an auditor in terms of section 1212 of the Companies Act 2006

Bath, UK 24 September 2021

Action for M.E. Trustees report 2020 – 2021 21

Action for M.E. statement of financial activities

Including income and expenditure account for the year ended 31 March 2021

Notes
~~Ii~~		 Unrestricted
funds (£)		 Restricted
funds (£)		 Total
2021 (£)		 Total
2020 (£)
~~ncomng resources~~
Incoming resources
from generated funds:
Donations and legacies
3		 621,035 378,071 999,106 828,678
Other trading activities
3
Investment income
4
Incoming resources from
3
charitable activities
Total incoming resources		 35,557
301
81,400
738,293		 75,763
–
–
453,834		 111,320
301
81,400
1,192,127		 34,775
1,268
84,806
949,527
~~R dd~~
~~esources expene~~
Costs of generating funds:
Costs of generating
5
voluntary income
Fundraising trading: costs of
goods sold and other costs
Charitable activities
5		 108,849
946
330,093		 6,000
14
386,692		 114,849
960
716,785		 137,470
3,521
844,986
Total resources expended 439,888 392,706 832,594 985,977
Net movement in funds
12		 298,405 61,128 359,533 (36,450)
Reconciliation of funds
Fund balances at 1 April 2020
309,645
216,337
525,982
562,432
~~Fd bl t 1 Ail 2021~~
~~608050~~
~~277465~~
~~885515~~
~~525982~~
~~un aances a pr~~
~~,~~
~~,~~
~~,~~
~~,~~

All incoming resources and resources expended derive from continuing operations. The notes on p 25 to 35 form an integral part of these accounts.

22 Action for M.E. Trustees report 2020 – 2021

Balance sheet

As at 31 March 2021 (company registered number 2906840)

Notes
~~Fid t~~		 2021 (£) 2020 (£)
~~xe asses~~
Tangible assets
9
Investments
10
Total fxed assets
~~Nt t t~~		 27,679
50,000
77,679		 27,181
–
27,181
~~e curren asses~~
Debtors
11
Cash at bank and in hand		 192,832
689,256		 130,037
421,808
Total current assets 882,088 551,845
Creditors: Amounts falling due within one year
12		 (74,252) (53,044)
Net current assets 807,836 498,801
Total assets less current liabilities 885,515 525,982
~~Citl d~~
~~apa an reserves~~
General funds
Designated funds
13		 268,050
340,000		 219,645
90,000
Unrestricted funds
Restricted funds
14		 608,050
277,465		 309,645
216,337
Accumulated funds 885,515 525,982

The accounts have been prepared in accordance with the special provisions of Part 15 of the Companies Act 2006 and in accordance with Financial Reporting Standard 102 and the Charities SORP (FRS 102). The notes on p 24 to 34 form an integral part of these accounts.

Roger Siddle Chair of Board of Trustees and Directors

Philip Marsden Treasurer

Approved by the Board of Trustees 31 August 2021

Action for M.E. Trustees report 2020 – 2021 23


~~Ati f ME h f ttt f th dd 31 Mh 2021~~
~~con or .. casow saemen or e year ene arc~~
Net cash fow from operating activities
See note a below
Net cash fow from investing activities
See note b below
Net increase in cash and cash equivalents
Cash and cash equivalents at beginning of period
Cash and cash equivalents at end of period
~~Nt t th h f ttt~~		 2021
329,269
(61,821)
267,448
421,808
689,256		 2020
(143,610)
(8,971)
(152,581)
574,389
421,808
~~oes o e casow saemen~~
a
Cash fows from operating activities
Net movement in funds
Depreciation
Financial income
(Increase)/decrease in debtors
(Decrease)/increase in creditors
NET CASH FROM OPERATING ACTIVITIES
b
Cash fows from investing activities
Purchase of tangible fxed assets
Interest received
Investment in fnancial assets
NET CASH FROM INVESTING ACTIVITIES
~~Ali f h i Nt Fd~~		 £
359,533
11,624
(301)
370,856
(62,795)
21,208
329,269
£
(12,122)
301
(50,000)
(61,821)		 £
(36,450)
8,649
(1,268)
(29,069)
(43,655)
(70,886)
(143,610)
£
(10,239)
1,268
–
(8,971)
~~nayss o canges n e uns~~
At 01.04.2020 (£)
Cash Flow (£)
Cash at Bank
421,808
267,447
Total
421,808
267,447		 At 31.03.21 (£)
689,256
689,256

24 Action for M.E. Trustees report 2020 – 2021

Notes to the accounts

1 Accounting policies

The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019) as updated by Bulletin 1 – (‘Charities SORP (FRS 102)’), the Financial Reporting Standard applicable in the UK and Republic of Ireland (‘FRS 102’) and the Companies Act 2006.

Action for M.E. is a private company limited by guarantee and registered in England and Wales. Its registration details are given on p 34. It meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s). The financial statements are prepared on a going concern basis. The Trustees consider that there are no material uncertainties over going concern. The preparation of financial statements in compliance with FRS 102 Section 1A Small Entities requires the use of certain critical accounting estimates. It also requires management to exercise judgement in applying the accounting policies.

Fund accounting

General funds are unrestricted funds which are available for use at the discretion of the Trustees in furtherance of the general objectives of the Charity and which have not been designated for other purposes. Designated funds comprise unrestricted funds that have been set aside by the Trustees for particular purposes. The aim and use of each designated fund is set out in the notes to the accounts. Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the Charity for particular purposes. The aim and use of each restricted fund is set out in the notes to the accounts.

Deferred Income

In accordance with the FRS 102 SORP issued by the Charity Commission for England and Wales and the Office of the Scottish Charity Regulator, grants received in advance and specified by the donor as being subject to specific terms and conditions are deferred until the conditions applying to the grant are within the control of the Charity and it is probable that the imposed terms and conditions can be met. Such deferrals are shown in the notes to the accounts and the sums involved are shown as creditors in the accounts.

Recognition of liabilities

Liabilities are recognised on the accruals basis.

Investments

Investments are valued at mid-market value at the year-end. Realised and unrealised gains or losses are credited or charged to the relevant fund in the Statement of Financial Activities.

Incoming resources

Incoming resources, including bank interest receivable, are accounted for on a receivable basis when the Charity is legally entitled to the income and the amount can be quantified with reasonable accuracy.

Donated services and facilities are included as voluntary income at their estimated value to the Charity when received, and under the appropriate expenditure heading depending on the nature of the service or facility provided. Time donated by volunteers is not recognised in the financial statements as this cannot be reliably valued. For Legacies, entitlement to funds, the measurable amount of the legacy and the probability that it will be received inform the decisions around recognition and receipt of legacy funds. Deferred income, where appropriate, is accounted for as above.

Resources expended

All expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all costs related to that category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources.

Support costs are allocated to operational and fundraising functions on the basis of their use of central support services.

Grants payable are payments made to third parties in furtherance of the Charity’s objectives. Single or multi-year grants are accounted for when either the recipient has a reasonable expectation that they will receive a grant and the Trustees have agreed to pay the grant without condition, or when the recipient has a reasonable expectation that they will receive a grant and any condition attaching to the grant is outside the control of the Charity. Where a grant includes specific performance terms, grants payable are recognised as performance milestones are met.

Provisions for grants are made when the intention to make a grant has been communicated to the recipient but there is uncertainty about either the timing or the amount of the grant.

Fundraising costs are those incurred in seeking voluntary contributions and do not include the costs of disseminating information in support of the charitable activities.

Charitable expenditure comprises those costs incurred by the Charity in the delivery of its activities and services for its beneficiaries. It includes both costs that can be allocated directly to such activities and those costs of an indirect nature necessary to support them.

Support costs include all expenditure not directly related to charitable activity. The Trustees have applied what they consider to be reasonable judgements in apportioning such costs between direct charitable costs

and support costs. The central office functions such as general management, payroll administration, budgeting and accounting, information technology, human resources and financing, are allocated across the categories of charitable expenditure and the costs of generating funds. The basis of the cost allocation is explained in note 5 to the accounts.

Governance costs are the costs associated with the governance arrangements of the Charity which relate to the general running of the Charity as opposed to those costs associated with fundraising or charitable activity. Included within this category are the cost of audit fees and costs linked to the strategic management of the Charity.

Governance costs are allocated across the categories of charitable expenditure and the costs of generating funds. The basis of allocation is explained in note 5 to the accounts.

Fixed assets and depreciation

Tangible fixed assets are stated at cost less depreciation. Items of less than £500 are not capitalised. Depreciation has been provided at the following rates in order to write off the cost of the assets (less their expected residual value) over their estimated useful economic lives. Office Equipment – 25% on the straight line method.

Pensions

The Charity operates an occupational pension scheme. Contributions are charged to the Statement of Financial Activities as they become payable in accordance with the rules of the scheme. The scheme is a defined contribution scheme.

Taxation

As a registered Charity whose income and gains are used solely for its charitable purposes, the Charity falls within the exemption for corporation tax and as such has had no tax charge for this accounting period. The Charity operates a partialexemption method for the recovery of certain VAT. The amount of VAT that cannot be recovered is included in support costs and is £18,566 (£24,008 in 2020).

Operating lease agreements

Rentals applicable to operating leases when substantially all of the benefits and risks of ownership remain with the lessor are charged against profits on a straight line basis over the period of the lease.

Financial instruments

The Charity only has financial assets and liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value. The Charity does not acquire put options, derivatives or other complex financial instruments.

Action for M.E. Trustees report 2020 – 2021 25

2 Judgements in applying accounting policies and key sources of estimation uncertainty

In preparing these financial statements the Trustees have had to make the following judgements:

3 Details of incoming resources

3 Details of incoming resources
Unrestricted
funds (£)
~~Dti d li~~		 Restricted
funds (£)		 Total
2021 (£)		 Total
2020 (£)
~~onaons an egaces~~
Trusts and companies
104,406
Donations and appeals
326,027
Legacies
114,042
Tax recoverable
63,360
Gifts in kind
3,200
Grant Income
10,000		 149,422
27,395
13,882
4,039
–
183,333		 253,828
353,422
127,924
67,399
3,200
193,333		 263,261
317,675
130,995
57,551
5,493
63,703
621,035 378,071 999,106 828,678
~~Oth tdi tiiti~~
~~er rang acves~~
Lotteries and raffes
11,889
Christmas cards
2,602
Supplement commission
2,588
Merchandise
163
Events
–
Other
18,315		 –
–
–
141
–
75,622		 11,889
2,602
2,588
304
–
93,937		 9,743
3,653
1,688
965
750
17,976
35,557 75,763 111,320 34,775
~~Ii f hitbl tiiti~~
~~ncomng resources rom carae acves~~
Subscriptions
81,377
Charity journal
–
Information and publications
23		 –
–
–		 81,377
–
23		 82,906
1,568
332
81,400 – 81,400 84,806

26 Action for M.E. Trustees report 2020 – 2021

Details of 2020 income
~~Dti d li~~		 Unrestricted
funds (£)		 Restricted
funds (£)		 Total
2020 (£)
~~onaons an egaces~~
Trusts and companies		 90,348 162,913 253,261
Donations and appeals 282,128 35,547 317,675
Legacies 130,995 – 130,995
Tax recoverable 53,291 4,260 57,551
Gifts in kind 2,000 3,493 5,493
Grant Income – 63,703 63,703
558,762 269,916 828,678
~~Oth tdi tiiti~~
~~er rang acves~~
Lotteries and raffes		 9,743 – 9,743
Christmas cards 3,653 – 3,653
Supplement commission 1,688 – 1,688
Merchandise 368 597 965
Events 750 – 750
Other 16,823 1,153 17,976
33,025 1,750 34,775
~~Ii f hitbl tiiti~~
~~ncomng resources rom carae acves~~
Supporting Membership		 82,906 – 82,906
Membership magazine 1,568 – 1,568
Information and publications 332 – 332
84,806 – 84,806
4 Investment income
2021 (£)
Interest from cash investments in the UK
301		 2020 (£)
1,268
301 1,268

Action for M.E. Trustees report 2020 – 2021 27

5 Resources expended

Unrestricted
funds (£)
~~Ct f ti lt i~~		 Restricted
funds (£)		 Total
2021 (£)		 Total
2020 (£)
~~oss o generang vounary ncome~~
Staff costs
13,965		 – 13,965 28,420
Direct fundraising costs
11,102		 – 11,102 13,968
Support costs – see below
83,782		 6,000 89,782 95,082
108,849 6,000 114,849 137,470
Unrestricted
funds (£)
~~Chitbl tiiti~~		 Restricted
funds (£)		 Total
2021 (£)		 Total
2020 (£)
~~arae acves~~
Information and support services
193,908		 268,288 462,196 489,961
Campaigning and infuencing work
103,329		 2,967 106,296 289,795
Collaborative biomedical research
32,856		 115,437 148,293 65,230
330,093 386,692 716,785 844,986

Costs of charitable activities for unrestricted funds are analysed as follows:

Activities
undertaken
directly
~~Atiit~~		 Support costs
as below		 Total (£)
~~cvy~~
Information and support services
87,126
Campaigning and infuencing work
70,473
Collaborative biomedical research
–		 106,782
32,856
32,856		 193,908
103,329
31,856
157,599 172,494 330,093

28 Action for M.E. Trustees report 2020 – 2021

Central support and governance costs are allocated as follows according to full-time equivalent number of staff per activity.

Governance
Admin costs
Property
Offce
IT admin
costs as below
fnance
management
management
costs
Total £
~~Support costs~~
Communications and policy
3,929
4,443
3,338
17,902
3,244
32,856
Information and services
12,769
14,440
10,849
58,182
10,542
106,782
Research
3,929
4,443
3,338
17,902
3,244
32,856
20,627
23,326
17,525
93,986
17,030
172,494
Fundraising
10,019
11,330
8,512
45,650
8,271
83,782
30,646
34,656
26,037
139,636
25,301
256,276		 Governance
Admin costs
Property
Offce
IT admin
costs as below
fnance
management
management
costs
Total £
~~Support costs~~
Communications and policy
3,929
4,443
3,338
17,902
3,244
32,856
Information and services
12,769
14,440
10,849
58,182
10,542
106,782
Research
3,929
4,443
3,338
17,902
3,244
32,856
20,627
23,326
17,525
93,986
17,030
172,494
Fundraising
10,019
11,330
8,512
45,650
8,271
83,782
30,646
34,656
26,037
139,636
25,301
256,276		 Governance
Admin costs
Property
Offce
IT admin
costs as below
fnance
management
management
costs
Total £
~~Support costs~~
Communications and policy
3,929
4,443
3,338
17,902
3,244
32,856
Information and services
12,769
14,440
10,849
58,182
10,542
106,782
Research
3,929
4,443
3,338
17,902
3,244
32,856
20,627
23,326
17,525
93,986
17,030
172,494
Fundraising
10,019
11,330
8,512
45,650
8,271
83,782
30,646
34,656
26,037
139,636
25,301
256,276		 Governance
Admin costs
Property
Offce
IT admin
costs as below
fnance
management
management
costs
Total £
~~Support costs~~
Communications and policy
3,929
4,443
3,338
17,902
3,244
32,856
Information and services
12,769
14,440
10,849
58,182
10,542
106,782
Research
3,929
4,443
3,338
17,902
3,244
32,856
20,627
23,326
17,525
93,986
17,030
172,494
Fundraising
10,019
11,330
8,512
45,650
8,271
83,782
30,646
34,656
26,037
139,636
25,301
256,276		 Governance
Admin costs
Property
Offce
IT admin
costs as below
fnance
management
management
costs
Total £
~~Support costs~~
Communications and policy
3,929
4,443
3,338
17,902
3,244
32,856
Information and services
12,769
14,440
10,849
58,182
10,542
106,782
Research
3,929
4,443
3,338
17,902
3,244
32,856
20,627
23,326
17,525
93,986
17,030
172,494
Fundraising
10,019
11,330
8,512
45,650
8,271
83,782
30,646
34,656
26,037
139,636
25,301
256,276		 Governance
Admin costs
Property
Offce
IT admin
costs as below
fnance
management
management
costs
Total £
~~Support costs~~
Communications and policy
3,929
4,443
3,338
17,902
3,244
32,856
Information and services
12,769
14,440
10,849
58,182
10,542
106,782
Research
3,929
4,443
3,338
17,902
3,244
32,856
20,627
23,326
17,525
93,986
17,030
172,494
Fundraising
10,019
11,330
8,512
45,650
8,271
83,782
30,646
34,656
26,037
139,636
25,301
256,276
Governance
costs as below
~~St t~~		 Admin costs
fnance		 Property
management		 Offce
management		 IT admin
costs		 Total £
~~uppor coss~~
Communications and policy
3,929
Information and services
12,769
Research
3,929		 4,443
14,440
4,443		 3,338
10,849
3,338		 17,902
58,182
17,902		 3,244
10,542
3,244		 32,856
106,782
32,856
20,627
Fundraising
10,019		 23,326
11,330		 17,525
8,512		 93,986
45,650		 17,030
8,271		 172,494
83,782
30,646 34,656 26,037 139,636 25,301 256,276

Office costs include £3,200 (£2,000 in 2020) for professional services in kind.

2021 (£)
~~G t~~		 2020 (£)
~~overnance coss~~
Administrative salaries – based on time spent
22,400
Indemnity insurance for Trustees
1,774
Governance training and travel
1,320
Trustees’ expenses
–
Meeting room hire and refreshment costs
–
Auditors’ fees
6,400
Professional fees
604
Design and printing
756
Postage and offce supplies
32		 13,641
2,314
2,674
3,275
5,268
6,250
400
1,312
168
30,646 35,302
2021 (£)
~~Gt tiiti~~		 2020 (£)
~~ran acves~~
The University of Sussex – PHD in biomedical research
15,664
The University of Edinburgh – PHD in biomedical research
–		 15,243
2,306
15,664 17,549

Action for M.E. Trustees report 2020 – 2021 29


Details of 2020 expenditure
Unrestricted
funds (£)
~~Ct f ti lt i~~		 Restricted
funds (£)		 2020 (£)
~~oss o generang vounary ncome~~
Staff costs
28,420		 – 28,420
Direct fundraising costs
10,934		 3,034 13,968
Support costs – see below
95,082		 – 95,082
134,436 3,034 137,470
~~Chitbl tiiti~~
~~arae acves~~
Information and support services
303,597		 186,364 489,961
Campaigning and infuencing work
279,086		 10,709 289,795
Collaborative biomedical research
11,319		 53,911 65,230
594,002 250,984 844,986

Costs of charitable activities for unrestricted funds are analysed as follows:

Activities
undertaken
directly
~~Atiit~~		 Support costs
as below		 Total (£)
~~cvy~~
Information and support services
115,696		 187,901 303,597
Campaigning and infuencing work
193,059		 86,027 279,086
Collaborative biomedical research
–		 11,319 11,319
308,755 285,247 594,002

Central support and governance costs are allocated as follows according to full-time equivalent number of staff per activity.

Governance
Admin costs
Property
Offce
IT admin
costs as below
fnance
management
management
costs
Total £
~~Support costs~~
Communications and policy
7,985
12,127
7,553
50,540
7,822
86,027
Information and services
17,441
26,488
16,498
110,390
17,084
187,901
Research
1,051
1,595
994
6,650
1,029
11,319
26,477
40,210
25,045
167,580
25,935
285,247
Fundraising
8,825
13,403
8,349
55,860
8,645
95,082
35,302
53,613
33,394
223,440
34,580
380,329		 Governance
Admin costs
Property
Offce
IT admin
costs as below
fnance
management
management
costs
Total £
~~Support costs~~
Communications and policy
7,985
12,127
7,553
50,540
7,822
86,027
Information and services
17,441
26,488
16,498
110,390
17,084
187,901
Research
1,051
1,595
994
6,650
1,029
11,319
26,477
40,210
25,045
167,580
25,935
285,247
Fundraising
8,825
13,403
8,349
55,860
8,645
95,082
35,302
53,613
33,394
223,440
34,580
380,329		 Governance
Admin costs
Property
Offce
IT admin
costs as below
fnance
management
management
costs
Total £
~~Support costs~~
Communications and policy
7,985
12,127
7,553
50,540
7,822
86,027
Information and services
17,441
26,488
16,498
110,390
17,084
187,901
Research
1,051
1,595
994
6,650
1,029
11,319
26,477
40,210
25,045
167,580
25,935
285,247
Fundraising
8,825
13,403
8,349
55,860
8,645
95,082
35,302
53,613
33,394
223,440
34,580
380,329		 Governance
Admin costs
Property
Offce
IT admin
costs as below
fnance
management
management
costs
Total £
~~Support costs~~
Communications and policy
7,985
12,127
7,553
50,540
7,822
86,027
Information and services
17,441
26,488
16,498
110,390
17,084
187,901
Research
1,051
1,595
994
6,650
1,029
11,319
26,477
40,210
25,045
167,580
25,935
285,247
Fundraising
8,825
13,403
8,349
55,860
8,645
95,082
35,302
53,613
33,394
223,440
34,580
380,329		 Governance
Admin costs
Property
Offce
IT admin
costs as below
fnance
management
management
costs
Total £
~~Support costs~~
Communications and policy
7,985
12,127
7,553
50,540
7,822
86,027
Information and services
17,441
26,488
16,498
110,390
17,084
187,901
Research
1,051
1,595
994
6,650
1,029
11,319
26,477
40,210
25,045
167,580
25,935
285,247
Fundraising
8,825
13,403
8,349
55,860
8,645
95,082
35,302
53,613
33,394
223,440
34,580
380,329		 Governance
Admin costs
Property
Offce
IT admin
costs as below
fnance
management
management
costs
Total £
~~Support costs~~
Communications and policy
7,985
12,127
7,553
50,540
7,822
86,027
Information and services
17,441
26,488
16,498
110,390
17,084
187,901
Research
1,051
1,595
994
6,650
1,029
11,319
26,477
40,210
25,045
167,580
25,935
285,247
Fundraising
8,825
13,403
8,349
55,860
8,645
95,082
35,302
53,613
33,394
223,440
34,580
380,329
Governance
costs as below
~~St t~~		 Admin costs
fnance		 Property
management		 Offce
management		 IT admin
costs		 Total £
~~uppor coss~~
Communications and policy
7,985
Information and services
17,441
Research
1,051		 12,127
26,488
1,595		 7,553
16,498
994		 50,540
110,390
6,650		 7,822
17,084
1,029		 86,027
187,901
11,319
26,477
Fundraising
8,825		 40,210
13,403		 25,045
8,349		 167,580
55,860		 25,935
8,645		 285,247
95,082
35,302 53,613 33,394 223,440 34,580 380,329

30 Action for M.E. Trustees report 2020 – 2021

6 Net movement in funds

6 Net movement in funds
2021 (£)
~~Thi i ttd ft hi~~		 2020 (£)
~~s s sae aer cargng:~~
Operating lease
18,430
Depreciation of owned fxed assets
11,605
Auditor remuneration
6,400
Trustees’ expenses
–
Pension costs
36,435		 27,311
8,649
6,250
3,275
20,121

Funds belonging to the Charity have been used for the purchase of insurance to protect the Charity from loss arising from the neglect or defaults of its employees or agents, acting as such, or to indemnify the employees, acting as such, against the consequences of any neglect or default on their part.

This does not cover any employees who are also Trustees in their capacity as Trustees and acting as such. The sum expended by the Charity on such insurance for the year to 31 March 2021 was £1,774 (in 2020 it was £2,322).

7 Staff costs and emoluments

7 Staff costs and emoluments
2021 (£)
Gross salaries
543,595
Employer’s National Insurance
45,857
Pension contributions
18,440		 2020 (£)
585,545
51,107
20,121
607,892 656,773
~~Nb f fllti l fllti ilt~~
~~umers o u-me empoyees or u-me equvaens~~
2021
Engaged on charitable activities
11
Engaged in fundraising activities
4
Engaged on management and administration
4		 2020
13
4
4
19 21
The number of employees whose emoluments as defned for taxation
Number
purposes amounted to over £60,000 in the year was as follows:
1		 Number
1

The Charity considers its key personnel to comprise the Trustees and the Chief Executive Officer. The total employment benefits including employer pension contributions of the key personnel were £87,391 (£87,391 in 2020).

The Charity remains grateful for the work of its volunteers. The role and scope of work undertaken varies, and takes into account the fluctuating energy levels of the volunteers, many of whom are affected by M.E.

The time donated by volunteers is not recognised in the financial statements as this cannot be reliably or consistently valued.

Action for M.E. Trustees report 2020 – 2021 31

8 Trustees

8 Trustees
2021 (£) 2020 (£)
The Trustees all give freely their time and expertise without any form of remuneration
or other beneft in cash or kind. – –
Total expenses reimbursed to Trustees or met by the Charity. These expenses were
made up of fve Trustees for travel and accommodation for the purpose of attending
Board meetings. – 3,275
Amounts of expenses incurred by Trustees that were donated back to the Charity. – 406
There were no related party transactions up to 31 March 2020.

9 Tangible fixed assets

Offce equipment (£)
~~Cost~~
At 1 April 2020
54,775
Additions for year
12,122
Disposals in year
–
At 31 March 2021
66,897
~~Depreciation~~
At 1 April 2020
27,594
Charge for year
11,624
Disposals in year
–
At 31 March 2021
39,218
~~Net book value~~
At 31 March 2020
27,181
At 31 March 2021
27,679
~~Ct~~
~~os~~
At 1 April 2020
54,775
Additions for year
12,122
Disposals in year
–
At 31 March 2021
66,897
~~Diti~~
~~eprecaon~~
At 1 April 2020
27,594
Charge for year
11,624
Disposals in year
–
At 31 March 2021
39,218
~~Nt bk l~~
~~e oo vaue~~
At 31 March 2020
27,181
At 31 March 2021
27,679

10 Investments

10 Investments 10 Investments
~~Mkt l~~
~~are vaue~~
At 1 April 2020
50,000
Revaluations
–
At 31 March 2021
50,000
~~Nt bk l~~
~~e oo vaue~~
At 31 March 2020		 –
At 31 March 2021 50,000

There were no investment assets outside of the UK.

32 Action for M.E. Trustees report 2020 – 2021

11 Debtors

11 Debtors
2021 (£)
Trade debtors
41,397
Prepaid expenses
28,911
Due from HMRC
–
Accrued income
122,524		 2020 (£)
120
24,849
2,920
102,148
192,832 130,037
12 Creditors: amounts falling due within one year

2021 (£)
Trade creditors
43,054
Deferred income
–
Accrued expenses
15,178
Unpaid pension contributions
3,482
Due to HMRC
897
Other taxation and social security costs
11,641		 2020 (£)
18,247
721
17,746
3,451
–
12,879
74,252 53,044

13 Funds

13 Funds
General
funds (£)
~~Sttt f titd fd~~		 Designated
funds (£)		 Total (£)
~~aemen o unresrce uns~~
Balance at 1 April 2020
219,645
Transfer between funds
(250,000)
Surplus for year
298,405		 90,000
250,000
–		 309,645
–
298,405
Balance at 31 March 2021
268,050		 340,000 608,050
Tangible
Cash
fxed
assets (£)
~~Ali f t t bt fd t~~		 Other Net
current
assets (£)		 Total (£)
~~nayss o ne asses eween uns – curren year~~
Unrestricted funds:
General funds
27,679
137,344
Designated funds
–
340,000		 103,027
–		 268,050
340,000
27,679
477,344
Restricted funds
–
211,911		 103,027
65,554		 608,050
277,465
27,679
689,255		 168,581 885,515

Action for M.E. Trustees report 2020 – 2021 33

Tangible
fxed
assets (£)
~~Ali f t t bt fd i~~		 Cash Other Net
current
liabilities (£)		 Total (£)
~~nayss o ne asses eween uns – pror year~~
Unrestricted funds:
General funds
27,181
Designated funds
–		 115,471
90,000		 76,993
–		 219,645
90,000
27,181
Restricted funds
–		 205,471
216,337		 76,993
–		 309,645
216,337

27,181		 421,808 76,993 525,982

14 Restricted funds

14 Restricted funds
Opening
balances
£
~~Mt i titd fd~~		 Incoming
resources
£		 Outgoing
resources
£		 Closing
Balances
£
~~ovemens n resrce uns~~
Research
125,084		 57,879 35,217 147,746
Priority Setting Partnership
–		 99,072 33,518 65,554
DecodeME
–		 46,702 46,702 –
Crisis, Support and Advocacy
44,272		 137,478 127,291 54,459
Mentor M.E.
42,103		 63,703 105,806 –
M.E. Friends Online
–		 10,000 5,172 4,828
Printed resources
4,878		 – – 4,878
Government furlough grant
–		 23,920 23,920 –
Operations
–		 15,080 15,080 –
216,337 453,834 392,706 277,465

Research – donations received from donors wishing to see advances in research. Two co-funded PhD students have been supported in part from this fund during the year. See the grant activities table on p 28 for more details.

Priority Setting Partnership – funding to manage and administrate this project led by people with M.E., carers and clinicians, and facilitated by the James Lind Alliance, which aims to influence future M.E. research funding.

DecodeME – funding awarded jointly by the Medical Research Council and National Institute for Health Research for our role in co-leading this research project as part of the ME/CFS Biomedical Partnership.

Crisis Support and Advocacy – donations for our support services, combined into a UK-wide service for people with M.E. of all ages, in response to the Covid-19 pandemic.

Mentor M.E. – funded by Health and Social Care Alliance Scotland from the Transforming Self-Management in Scotland Fund. This project developed a network of volunteer peer mentors supporting people living with M.E. in Scotland, ending in March 2021.

M.E. Friends Online – our forum for adults with M.E. to share peer-support, friendship and practical tips about living with M.E.

Printed resources – Grant for revising three of our key printed publications: All about M.E., Your child and M.E. (for parents) and Caring for someone with M.E. (for carers).

Government Furlough Grant – Government funding for the wages of the staff members we put on furlough because of Covid-19.

Operations – funding towards operational programme design and delivery, driving positive change and improvement and developing powerful impact measures.

34 Action for M.E. Trustees report 2020 – 2021

15 Pension commitments

The Charity operates a defined contribution pension scheme. The pension cost charge for the year represents contributions payable to the scheme and is disclosed in note 7. Contributions in the sum of £3,482 (£3,451 in 2020) were outstanding at the balance sheet date.

16 Operating leases

At the year end the Charity had commitments under non-cancellable operating leases as set out below.

Total Leases
2021 (£)
~~Oti l t flli d~~		 Total Leases
2020 (£)
~~perang ease paymens ang ue:~~
within one year
30,895
within two to fve years
122,440
over fve years
53,070		 26,917
1,710
–
206,405 28,627

17 Contingent assets

During the year the Charity has been advised of a number of legacies and has received significant income. The value of some legacies that are dependent on the sale of an estate could not be estimated within the accounting period and will be recognised as income in the financial year they become certain.

18 Research funding commitments

The Charity is committed to funding a number of research grants over the forthcoming years subject to certain performance conditions being met. The Charity is committed to further expenditure of £105,000 of which £75,000 is to be spent in the year to 31 March 2022.

Action for M.E. Trustees report 2020 – 2021 35

Legal and administrative details

Action for M.E.

Registered charity No 1036419 Registered in Scotland SC040452 Incorporated on 10 March 1994 Company registration number 2906840

Registered office 42 Temple Street Keynsham Bristol BS31 1EH

Bankers

The Royal Bank of Scotland 144 New Street Birmingham B2 4NY

Auditor

Moore 30 Gay Street Bath BA1 2PA

Trustees and Directors 2020 – 2021 President Clare Francis MBE

Founding President Sue Finlay

Vice President Martin Arber

Patrons

Lord Bragg Julie Christie Lord Puttnam CBE Alan Cook CBE Prof Anthony J Pinching

Honorary Patron Ondine Upton

Board of Trustees

Roger Siddle, Chair Philip Marsden, Treasurer Matt Symonds Colin Batten

Christopher Cundy (stood down October 2020)

Shaun De Boo (joined February 2021) Alison Deeth

Andy Dougan (stood down October 2020) Lucy Goodwill Sue Hardy

David Leigh (joined December 2020)

Jonathan Manuel (joined March 2021) Phil Murray Jane Stacey Ed Stephens

Jane Young (stood down October 2020)

Chief Executive

Sonya Chowdhury

Principal Medical Advisers

Dr Gregor Purdie Prof Julia Newton

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36 Action for M.E. Trustees report 2020 – 2021
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Action for M.E. Trustees port2 20 2021

“Myself and my daughter have been members of the charity following my daughter’s diagnosis of M.E. in 2015. We have had lengthy battles with various organisations who do not seem to acknowledge M.E. and the difficulties and restrictions it can present. Throughout our battles we have found advice, support and information from Action for M.E. to always prevail and I really do not know where we would be if this charity did not exist. You have literally been a life saver and allowed us to keep our sanity. We are both so grateful and felt it was the least we could do to make contact and pass on our gratitude. We will continue to support you and cannot thank you enough.”

Action for M.E. supporter

42 Temple Street Keynsham BS31 1EH

Crisis, Advocacy and Support Service: 0117 927 9551 Email: questions@actionforme.org.uk www.actionforme.org.uk

@actionforme

[@actionform.e]

Registered charity in England and Wales no. 1036419 Registered in Scotland no. SC040452 Company limited by guarantee, registered in England no. 2906840 ©Action for M.E. 2021