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2024-09-30-accounts

Trustees' Annual Report for the period

Period start date Period end date 01 10 2023 30 09 2024 From To

Section A Reference and administration details

Charity name

INVEST in ME RESEARCH

Other names charity is known by IiMER InMER IiME RESIME Invest in ME

Registered charity number (if any) 11153730 Charity's principal address PO Box 561 Eastleigh Hampshire Postcode SO50 0GQ ~~ee~~ Names of the charity trustees who manage the charity Dates acted if not for whole Name of person (or body) entitled Trustee name Office (if any) year to appoint trustee (if any) 1 Kathleen McCall Chairman 2 Richard Simpson Trustee 3 Joyce Wood Trustee 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 ~~==~~ Names of the trustees for the charity, if any, (for example, any custodian trustees) Name Dates acted if not for whole year

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Names and addresses of advisers (Optional information)

Type of adviser Name Address

Name of chief executive or names of senior staff members (Optional information)

Section B Structure, governance and management

Description of the charity’s trusts

Type of governing document

CIO Foundation Model

CHARITABLE INCORPORATED ORGANISATION How the charity is constituted

Trustee selection methods

Appointed by Existing Trustees

Additional governance issues (Optional information)

Invest in ME Research (IiMER) works to build relationships nationally and internationally with other organisations who promote similar aims.

You may choose to include additional information, where relevant, about:

The charity is a founding member and chair for sixteen years of the European ME Alliance, a collaboration of national patient organisations and charities across Europe.

The charity also has cultivated links to many organisations, researchers, clinicians and healthcare staff and initiated, and continues to support European groups of researchers, clinicians and young researchers who will work together.

Section C Objectives and activities

To promote and protect the well-being of sufferers of ME. To advance the education of the public in relation to ME. To promote research into causes and treatment of ME. Summary of the objects of the charity set out in its governing document

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Summary of the main
activities undertaken for the
public benefit in relation to
these objects (include within
this section the statutory
declaration that trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit)		 The main activities are–
Organisation of annual public International ME Conferences that attract
doctors, scientists, researchers, patients and carers from around the
world to collaborate and share knowledge about ME.
Organisation of international research colloquiums to encourage new
collaborative and cooperative possibilities for research into ME.
Creation and development of network of young researchers for ME.
Foundation and support of a collaborative European ME Research Group
network for researchers to come together.
Foundation and support of a collaborative European ME Clinicians
Council network for European clinicians to come together to build
knowledge and expertise around ME.
Production of educational material (videos, booklets, journals and
guidelines) related to ME.
Finding, facilitating and funding of biomedical research into ME.
Continuing development of the Centre of Excellence for ME model that
the charity has proposed and championed since 2011.
Initiation of awareness and fund-raising activities regarding ME.
Maintenance of web sites for the charity, and European ME organisations
containing educational information regarding ME and our initiatives and
conferences
Creation and administering of webinars to enhance education of the
public and to disseminate information around Europe regarding ME.
Advocacy work to help patients in need. Participation in DHSC working
group to develop policies for ME.
Distribution of regular newsletters to patient groups, patients, healthcare
staff, media, politicians and general public regarding ME.
Board member of the European ME Alliance and participating in
European collaborative projects regarding awareness of ME.

Additional details of objectives and activities (Optional information)

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The trustees and volunteers perform all of the charity’s work for free.

The charity does not have any salaried staff.

The charity endeavours to provide services, products and information for free or as near to cost price as possible, to avoid ME patients having to bear additional burdens around costs.

You may choose to include further statements, where relevant, about:

The charity has a Biomedical Research Fund that allows grants for research projects to be made in an attempt to initiate more biomedical research into Myalgic Encephalomyelitis.

The charity has a peer review process for examining applications for grants.

The charity attempts to initiate more biomedical research into Myalgic Encephalomyelitis with an emphasis on international collaboration.

The charity has published our policy on grant making on our web site.

We are continuing to support our proposal to develop a UK/European Centre of Excellence for ME that will include examinations and research facility into ME and would perform biomedical research into the disease and allow proper examinations and diagnosis for ME patients.

We have initiated several major research studies for ME in UK.

Section D Achievements and performance

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Section D Achievements and performance

Invest in ME Research Summary of the main achievements of the charity Period: October 2023 – September 2024 during the year Invest in ME Research (IIMER) is a small charity with a clear strategy of research, education, and advocacy, always aiming to look at the bigger picture and facilitate meaningful change through innovation, ideas, and determination. The charity remains dedicated to improving the lives of people with myalgic encephalomyelitis (ME), as well as their families and carers. We continue to challenge misconceptions and raise awareness of ME in scientific, media, and public circles, striving to advance understanding of the disease and to overcome flawed and outdated beliefs. No salaries have ever been paid by IiMER; all work is performed by volunteers. There is no intention to employ an expensive CEO or support staff, as our dedicated volunteers bring the necessary skills, knowledge, and commitment to our objectives. This ensures that the maximum possible funding is directed toward our essential aims: biomedical research into ME and events that facilitate education and collaboration. The charity continues to campaign for, fund, facilitate, and initiate more rapid research and treatment development, aiming to provide a better future for people with ME and their carers and families. We are grateful for the ongoing support of our loyal supporters, who have joined with us to progress biomedical research into ME. The Hendrie Foundation continues to support our Centre of Excellence for ME proposal and related research and clinical trial activities. We are convinced that a well-funded strategy of biomedical research into ME will lead to greater understanding, development of treatments, improved education, and more accurate information in the public domain, overcoming the ignorance, apathy, and misinformation that has persisted for decades. Therefore, research, education, and advocacy remain the core investments that this charity makes to expedite progress in overcoming ME. 1. Research Biomedical Research The charity continues to make significant progress in biomedical research into ME, raising awareness and attracting more funding despite limited resources. Centre of Excellence Invest in ME Research has continued to promote the development of a Centre of Excellence for ME at the Norwich Research Park. We believe this is the best way forward for securing proper research and treatments for people with ME in the UK and Europe. The charity has now funded five PhD studentships and, notably, two ME fellowships at the Quadram Institute Bioscience, building on the foundations for a UK/European Centre of Excellence for ME research in Norwich.

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Section D Achievements and performance

This year, we were proud to announce that our first fellowship has been named the Ian Gibson Fellowship for ME, in memory of our late patron and steadfast supporter, Dr Ian Gibson. In addition, the charity announced funding for a second fellowship, thanks to the wonderful support of the LunaNova company, further expanding our research capacity.

The only fully funded clinical trial for ME in the UK, supported by IiMER, continues to progress, with research activities resuming as pandemic restrictions have lifted and MHRA regulations are navigated.

National and International Collaboration

We continued to bring researchers together through the European ME Research Group (EMERG), fostering collaborative proposals for European research funding and welcoming new members.

This year, we worked with our European colleagues in the European ME Alliance (EMEA) to produce the pan-European ME survey, a significant initiative to gather data and raise awareness across Europe.

Key Events and Presentations

• In December 2023, Invest in ME Research was invited to present at the NIH Washington meeting, sharing our work and perspectives on ME research with an international audience.

• We arranged and hosted the International ME Conference Week 2024, which included the Young EMERG Workshop, the 13th Biomedical Research into ME Colloquium (BRMEC13), and the 16th Invest in ME International Conference (IIMEC16), as well as EMERG/NIH meetings. We were honoured to have contributions from WHO Europe at our conference, further raising the profile of ME research at an international level.

2. Education

The charity continued its commitment to education by organising and delivering a comprehensive international conference week in 2024, including:

• The Young EMERG Workshop, supporting early-career researchers and building future research capacity.

• The BRMEC13 Colloquium and IIMEC16 Conference, bringing together researchers, clinicians, and patients from around the world.

• Collaborative meetings with EMERG and NIH, facilitating knowledge exchange and strategic planning.

We also updated and distributed the Centre of Excellence Executive Summary for MPs, ensuring policymakers are kept informed of progress and the ongoing need for investment in ME research.

3. Advocacy

National Advocacy

• DHSC Interim Plan Research Working Group: During the year, the charity contributed to the Department of Health and Social Care’s

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Section D Achievements and performance

(DHSC) Interim Delivery Plan Research Working Group. Despite our active participation and detailed submissions (input04, input05), we regret to report that no substantive progress was made, and the time invested by stakeholders, including ourselves, was ultimately wasted – a huge opportunity wasted as the charity had clear proposals to expedite progress that we just ignored. We have documented our concerns and called for greater accountability and action but more years have been wasted (as we had previously predicted would happen without the urgency and direction that Invest in ME Research had advocated and proposed).

• APPG for ME Submission: IiMER submitted evidence to the AllParty Parliamentary Group (APPG) for ME in November 2023, continuing to advocate for improved research funding, clinical care, and recognition for people with ME (APPG submission).

European and International Advocacy

• IiMER continued to facilitate and support the European ME Alliance (EMEA), working collaboratively with national ME organisations from seventeen European countries.

• We facilitated and chaired EMEA meetings and worked with colleagues to develop and disseminate the pan-European survey.

• Our website, social media, and newsletters provided platforms for academic and patient voices, sharing up-to-date information, educational content, and opportunities for engagement.

Conclusion

Throughout the year, Invest in ME Research has continued to fund research, facilitate collaboration, and advocate for people with ME at national and international levels. Our achievements are made possible by the dedication of our volunteers and the generosity of our supporters. We remain committed to our vision of a better future for all affected by ME.

Our thanks go to our loyal supporters, many of whom are themselves severely affected by ME, for their ongoing efforts and commitment to making progress possible.

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Section E Financial review

Brief statement of the charity’s policy on reserves

Our reserves are held to meet expected and unexpected bills and to cover running costs and printing/stationery costs. Our objective is to use as much of our resources for the facilitation and implementation of biomedical research into ME and to raise awareness of the disease.

Details of any funds materially

in deficit

Further financial review details (Optional information)

You may choose to include additional information, where relevant about:

The Trustees feel that it is important to try to make all of the educational material and information that we create or facilitate (whether by way of conferences, webinars or other educational material) accessible to patients and their families for free or as cheaply as possible, without compromising professionalism or standards. Many patients and carers are unable to work due to the effects of this devastating neurological disease and the lack of a proper research strategy to create treatments.

The charity continues to feel that better education of healthcare staff via a strategy of biomedical research into ME is the key to improving conditions for people with ME and their families.

IiMER aims to provide all our work for free or at cost price. We are an independent charity whose focus is on better education, better awareness, and a strategy of high-quality biomedical research into myalgic encephalomyelitis.

We hope to continue to find, fund and facilitate research and provide a means to raise more awareness of this disease – ME – and so enable a rapid resolution to be created by provision of treatments and cures from high-quality science. This benefits not only people with ME, their carers and families, but also society in general.

The Trustees also note that administrative costs are kept to an absolute minimum. No salaries are paid, and all work is carried out by volunteers, ensuring donations are used efficiently to support research, education, and advocacy. The Trustees are mindful of the need to maintain sufficient reserves to meet ongoing research commitments and to provide stability for future projects. The charity remains independent and does not accept funding that would compromise its aims or values. All income is used to further the charity’s objectives and to benefit people with ME, their carers, and families.

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~~eee~~ Section F Other optional information

Section G Declaration ~~ee~~ The trustees declare that they have approved the trustees’ report above.

Signed on behalf of the charity’s trustees

Signature(s) Richard Simpson Full name(s) Kathleen McCall Position (eg Secretary, Chair, ~~es~~ Chair ~~eee~~ Trustee etc) ~~ee ee~~ Date 4th July 2025 30[th] June 2025 ~~Pp~~

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Charity Name No (if any) INVESTin ME RESEARCH 1153730

Receipts and payments accounts

CC16a

Period start date Period end date For the period To from 1-Oct-23 30-Sep-24

Section A Receipts and payments

Unrestricted Restricted Endowment Total funds Last year funds funds funds

to the nearest £ to the nearest £ to the nearest £ to the nearest £ to the nearest £

A1 Receipts

A1 Receiptsptsts A1 Receiptsptsts
General Donation,Legacies and Grants 94,944 - - 94,944 48,597
Conferences and meetings 16,915 - - 16,915 16,651
67 - - 67 - -
Brochure(CG & QQ & Journal etc)
Tax refund / Gift Aid 1,019 - - 1,019 - -
- - - - - -
- - - - - -
- - - - - -
- - - - - -
~~Sub total~~~~(Gross income for~~
AR) 112,945 - - 112,945 65,248
A2 Asset and investment sales,
(see table).
-
-
-
-
-
-
-
-
-
Sub total -
-
-
-
-
Total receipts
112,945
-
-
112,945
65,248
~~——————~~
A3 Payments
Meetings and conferences
85,477 - - 85,477 82,727
Printing of Brochures, Books & Printing of Brochures, Books &
Guidelines 777 - - 777 184 184
Postage, Packaging, Stationery
417 - - 417 411 411
Governance, Web Services,
Advertising 3,940 - - 3,940 3,186
Fundraising Products/Equipment
216 - - 216 696 696
Biomedical Research
40,710 - - 40,710 8,349
Bank Charges
CCXX R1 accounts (SS) 158 -
~~1~~		 - 158 365
~~7/13/2025~~		 365
- - - -
- - - -
Sub total 131,695 - - 131,695
A4 Asset and investment
purchases, (see table)
-
-
Sub total -
Total payments
Net of receipts/(payments)
A5 Transfers between funds
A6 Cash funds last year end
Cash funds this year end
- 18,751
-
438,127
419,377

CCXX R2 accounts (SS)

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2

Section B Statement of assets and liabilities at the end of the period

Categories
B3 Investment assets
B2 Other monetary assets
B4 Assets retained for the
charity’s own use
B1 Cash funds		 Details
Total cash funds
(agree balances with receipts and payments
account(s))
Details
Lloyds		 Details
Total cash funds
(agree balances with receipts and payments
account(s))
Details
Lloyds		 Unrestricted
funds
to nearest £
419,377
-
-
419,377
OK
Unrestricted
funds
to nearest £		 Unrestricted
funds
to nearest £
419,377
-
-
419,377
OK
Unrestricted
funds
to nearest £		 Restricted
funds
to nearest £
-
-
-
-
OK
Restricted
funds
to nearest £		 Restricted
funds
to nearest £
-
-
-
-
OK
Restricted
funds
to nearest £		 Endowment
funds
to nearest £
-
-
-
-
OK
Endowment
funds
to nearest £
- - -
- - -
- - -
- - -
- - -
- - -
Details Fund to which
asset belongs		 Cost (optional) Current value
(optional)
- -
- -
- -
- -
- -
Details Fund to which
asset belongs		 Cost (optional)
-
-
-
-
-
-
-
-
-		 Current value
(optional)
- -
- -
- -
- -
- -
- -
- -
- -
- -

CCXX R3 accounts (SS)

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3

Signed by one or two trustees on
behalf of all the trustees
B5 Liabilities		 Details
Richard Simpson
Signature
K.McCall		 Fund to which
liability relates
Amount due
(optional)
-
-
-
-
-
Print Name
Kathleen McCall
Richard Simpson		 When due
(optional)
Date of
approval
Kathleen McCall 7/2/2025
Richard Simpson Richard Simpson 6/30/2025

CCXX R4 accounts (SS)

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4

----- Start of picture text -----
| x | CHARITY COMMISSION
| | FOR ENGLAND AND WALES
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Independent examiner's report on the accounts

Section A Independent Examiner’s Report

Report to the trustees/ members of | INVEST in ME RESEARCH

On accounts for the year | 30th September 2024 ended

----- Start of picture text -----
Charity no | 1153730
(if any)
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| report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, | have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent | have completed my examination. | confirm that no material matters have examiner's statement come to my attention (other than that disclosed below *) in connection with the examination which gives me cause to believe that in, any material respect:

| have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in order to enable a proper understanding of the accounts to be reached. * Please deleteihe words in the brackets if they do not apply.

----- Start of picture text -----
Name:| P-F}+() L— Tots COC tla
| ,> __ ios ee
body |KCKC { U) (tev (tev |
----- End of picture text -----

Relevant professional | ,> __ ios ee qualification(s) or body |KCKC { U) (tev (tev (if any):

IER

1

October 2018

Section B Disclosure

Only complete if the examiner needs to highlight matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners).

Give here brief details of any items that the examiner wishes to disclose .

2

October 2018

IER