Trustees' Annual Report for the period
Period start date Period end date 01 10 2022 30 09 2023 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
Names of the charity trustees who manage the charity
| 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 |
Trustee name | Office (if any) | Dates acted if not for whole year |
Name of person (or body) entitled to appoint trustee(if any) |
|---|---|---|---|---|
| Kathleen McCall | Chairman | |||
| Richard Simpson | Trustee | |||
| Joyce Wood | Trustee | |||
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)
| Names and addresses of advisers (Optional information) | Names and addresses of advisers (Optional information) | 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
CIO Foundation Model Type of governing document (eg. trust deed, constitution) CHARITABLE INCORPORATED ORGANISATION How the charity is constituted (eg. trust, association, company) Appointed by Existing Trustees Trustee selection methods (eg. appointed by, elected by)
Additional governance issues (Optional information)
Invest in ME Research (IiMER) works to build relationships nationally and You may choose to include internationally with other organisations who promote similar aims. additional information, where relevant, about: The charity has continued to chair the European ME Alliance, a policies and procedures adopted for the induction and collaboration of national patient organisations and charities across Europe. training of trustees; the charity’s organisational The charity also has cultivated links to many organisations, researchers, structure and any wider clinicians and healthcare staff and has been involved in building European network with which the charity groups of researchers and clinicians who will work together. works; relationship with any related Our objectives are to facilitate high-quality biomedical research into ME with international collaboration and development of a centre of excellence parties; for ME that will serve UK and Europe. trustees’ consideration of major risks and the system During the year and as a result of the continuing fallout from the covid and procedures to manage pandemic then less funding of research and in person meetings was them. possible and the charity was able to conserve more for future work.
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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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. Summary of the main Production of educational material (videos, booklets, journals and activities undertaken for the guidelines) related to ME. public benefit in relation to these objects (include within Finding, facilitating and funding of biomedical research into ME. this section the statutory declaration that trustees have Continuing development of the Centre of Excellence for ME model that had regard to the guidance the charity has proposed and championed since 2011. issued by the Charity Commission on public Initiation of awareness and fund-raising activities regarding ME. benefit) 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. Distribution of regular newsletters to patient groups, patients, healthcare staff, media, politicians and general public regarding ME. Chairing and supporting 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:
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policy on grantmaking;
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policy programme related investment;
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contribution made by volunteers.
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 that take place at major UK institutes.
Section D Achievements and performance
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Section D Achievements and erformance p
Summary of the main Invest in ME Research (IIMER) is a small charity but has always aimed to achievements of the charity look at the bigger picture and facilitate change based on ideas and during the year determination. The charity continues its dedication and commitment to improving the lives of people living with ME, and their families and carers. We do this by changing the perception and awareness of ME in scientific, media and public circles through innovation and determination to make progress in understanding the disease and overcoming flawed and erroneous beliefs about the disease.
No salaries have ever been paid in IiMER, as all work is, and has been performed by volunteers. There continues to be no wish to employ an expensive CEO or support staff as we have dedicated and committed volunteers who bring the right skills, knowledge and experience to what we need to do. This, therefore, maximises the funding that can be directed toward what we believe are the essential objectives - biomedical research into ME and events to facilitate education and collaboration in research. The charity continues to campaign, fund, facilitate and initiate more rapid research and treatment development in order to provide a better future for people suffering from myalgic encephalomyelitis and their carers and families. The charity continued to benefit from a loyal group of supporters who have joined with us to progress biomedical research into ME. The charity continued to receive wonderful support from the Hendrie Foundation with regard to our development of a Centre of Excellence for ME proposal and related research and clinical trial.
The charity is convinced that a well-funded strategy of biomedical research into ME will lead to greater understanding of the disease, development of treatments, improved education and more awareness and accurate information about the disease being made into the public domain, which will then overcome the ignorance, apathy and misinformation that has been allowed to exist for decades. Therefore, research, education and advocacy – the investment in ME research that this charity makes.
Research
Biomedical research The charity continues to do a great deal to progress biomedical research into ME and raise awareness of the disease. Despite relatively few resources, the charity manages to accomplish a great deal and more funding was attracted during the year. Centre of Excellence Invest in ME Research has continued to promote the development of biomedical research to be based at a research and examination facility in the Norwich Research Park in Norfolk. We view this proposal as one of the best ways forward for securing proper research and treatments for people with ME in the UK and Europe. The charity has now funded five PhD studentships to perform research.
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Section D Achievements and erformance p The charity has also been able to fund fully the only clinical trial for ME in the UK – and one of only a handful in the world - a remarkable achievement for a small charity and its supporters. The research has necessarily been paused, and then delayed due to the effects of the pandemic. However, as more restrictions are lifted then gradually the research efforts are starting up again.
The charity was pleased to see that further investment in the research centre for ME in Norwich Research Park was made by BBSRC, thus strengthening the case for creating a focal point for research into ME in Norwich.
The charity announced the first ever Invest in ME Research Postdoctoral Fellowship for research into myalgic encephalomyelitis was to be renamed the Ian Gibson Fellowship for ME – in memory of the late Dr Ian Gibson – patron and supporter of the charity and a steadfast voice for biomedical research into ME. The charity is finding two ME fellowships now at Quadram Institute Bioscience and builds on the foundations already made for a UK/European Centre of Excellence for ME research hub in Norwich Research Park. To facilitate biomedical research into ME the charity also needs to fund it, in the absence of adequate funding policies from governments or research agencies. Great faith in the charity from supporters continued through the year with much effort spent on social media applying for awards from philanthropic funding bodies with a huge effort made to encourage people to vote for the charity.
An executive summary for MPs describing the centre of excellence for ME was updated and made available to all.
The charity was instrumental in bringing researchers together in the European ME Research Group to form a collaborative proposal for European research funding in the Horizon programme. This occurred during the events organised by the charity during international ME conference week.
This also saw new members of EMERG joining the team.
2 Education The charity decide to arrange and hold its first in person international ME conference week since the pandemic paused things in 2020. A new research colloquium for researchers from twenty countries was created along with the public conference day. The charity also initiated the Young EMERG – European ME Research Group Early Career Researcher Network to bring young European researchers together and build capacity for the future. The charity arranged the first Young EMERG workshop and the team collaborated to form an international agenda.
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Section D Achievements and erformance p
This led to collaboration for the NIH Washington conference in December 2022 . Invest in ME Research were invited to present at the early-career researcher even held at Washington by NIH.
The charity produced a new version of the Centre of Excellence Executive Summary for MPs document that allowed MPs to be brought up to date with the progress in development of a Centre of Excellence for ME foundation.
3 Advocacy
Europe
The charity again chaired the European ME Alliance (EMEA). Invest in ME Research is one of the founding members of EMEA, an important and unique grouping of national ME organisations from seventeen European countries that are working together to raise awareness and effect change across Europe. The charity has made enormous efforts to raise the profile of EMEA and is looking forward to new initiatives that will help all people with ME and their families. The development of a report from the EMEA Pan European survey is being progressed with our European colleagues.
The charity arranges and chairs EMEA meetings via zoom.
The charity had finally been invited to participate in the Department of Health's Clinical Research Collaboration (UKCRC) that proposed to "drive high-quality applications for research into ME/CFS and support the research community to build capacity and capability in this field". Invest in ME Research were not invited to any of the preliminary discussions or meetings and only received an invitation to join an already created working group in September 2022. Despite the lateness of the invitation, the charity committed effort to propose a rapid method to make progress in order to benefit patients and attended meetings to explain. The input to the meetings was documented on our web site for all to see and we were the main voice for asserting that all minutes of meetings should be made available to the public so that accountability could be seen to be made. Throughout the year, the charity contributed new ideas to this working group to make rapid progress, attempting to overturn the intransigence of establishment inertia with regards to thinking about ME.
Internet
The charity’s web site, social media sites and free newsletters continued to provide a platform for academic and patient voices concerning science and facts by providing current information, educational articles and opportunities for comment. As well as the main website for the charity, we also maintain the web sites for some of the European organisations with which the charity is
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Section D Achievements and erformance p
involved.
Our thanks go to our great and loyal supporters, many of whom are severely affected by ME yet who still go to amazing lengths to make things happen.
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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:
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the charity’s principal sources of funds (including any fundraising);
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how expenditure has supported the key objectives of the charity;
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investment policy and objectives including any ethical investment policy adopted.
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) to be 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 due to no proper research strategy existing to create treatments.
The research colloquiums are also made available to invited researchers for free or at a much reduced cost in order to encourage research and international collaboration.
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.
Section F Other optional information
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Section G Declaration
The trustees declare that they have approved the trustees’ report above.
Signed on behalf of the charity’s trustees
| Signature(s) Full name(s) Position (eg Secretary, Chair, etc) Date |
||
|---|---|---|
| Kathleen McCall | Richard Simpson | |
Chair |
Trustee | |
| 9thJune 2024 8thJune 2024 |
||
| 9thJune 2024 |
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| Charity Name | Charity Name | Charity Name | Charity Name | Charity Name | No (if any) | No (if any) | No (if any) | CC16a | |
|---|---|---|---|---|---|---|---|---|---|
| For the period from |
Period start date 01-Oct-22 |
To | Period end date 30-Sep-23 |
||||||
| Section A Receipts and payments | |||||||||
| A1 Receipts | Unrestricted funds to the nearest £ 48,597 16,651 - - - - - - 65,248 - - - 65,248 184 411 3,186 696 |
Restricted funds to the nearest £ - - - - - - - - - - - - - - - - - |
Endowment funds to the nearest £ - - - - - - - - - - - - - - - - - |
Total funds to the nearest £ 48,597 16,651 - - - - - - 65,248 - - - 65,248 184 411 3,186 696 82,727 8,349 365 - - 95,918 - - - 95,918 - 30,670 |
Last year to the nearest £ |
||||
| General Donation , Legacies and Grants | 48,597 | 349,485 | |||||||
| Conferences and meetings | 16,651 | 14,163 | |||||||
| Tax refund / Gift Aid | - | 163 | |||||||
| - | - | ||||||||
| - | - | ||||||||
| - | - | ||||||||
| - | - | ||||||||
| - |
- | ||||||||
| ~~Sub total~~~~(Gross income for~~ | 65,248 | 363,811 | |||||||
| A2 Asset and investment sales, (see table). |
|||||||||
| - | |||||||||
| - | - | ||||||||
| Sub total | - | - | |||||||
| Total receipts A3 Payments |
|||||||||
| 363,811 | |||||||||
Printing of Brochures, Books & Postage, Packaging, Stationery Governance, Web Services, Fundraising Products/Equipment |
184 | - | - | 184 | 25 | ||||
| 411 | - | - | 411 | 546 | |||||
| 3,186 | - | - | 3,186 | 4,231 | |||||
| 696 | - | - | 696 | 921 | |||||
Meetings, |
82,727 | - | - | 82,727 | - | ||||
| Biomedical Research Bank Charges |
8,349 | - | - | 8,349 | 15,202 | ||||
| 365 | - | - | 365 | 303 | |||||
| - | - | - | - | - | |||||
| - | - | - | - | - | |||||
| **Sub total ** | 95,918 | - | - | 95,918 | 21,228 | ||||
| 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 |
|||||||||
| 21,228 | |||||||||
| - 30,670 | - 30,670 | 342,583 | |||||||
| - | - | - | |||||||
| 468,798 | 468,798 | - | |||||||
| 438,127 | 438,127 | 342,583 |
CCXX R1 accounts (SS)
18/07/2024
1
Section B Statement of assets and liabilities at the end of the period
| Categories Signed by one or two trustees on behalf of all the trustees B5 Liabilities B3 Investment assets B2 Other monetary assets B4 Assets retained for the charity’s own use B1 Cash funds |
Details Details Total cash funds (agree balances with receipts and payments account(s)) Lloyds Details Details Details RichardSimpson Signature K.McCall |
Unrestricted funds Restricted funds to nearest £ to nearest £ 438,127 - - - - - 438,127 - OK OK Unrestricted funds Restricted funds to nearest £ to nearest £ - - - - - - - - - - - - Fund to which asset belongs Cost (optional) - - - - - Fund to which asset belongs Cost (optional) - - - - - - - - - Fund to which liability relates Amount due (optional) - - - - - Print Name Kathleen McCall Richard Simpson |
Endowment funds to nearest £ |
|---|---|---|---|
| - | |||
| - | |||
| - | |||
| - | |||
| OK | |||
| Endowment funds to nearest £ |
|||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| Current value (optional) |
|||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| Current value (optional) |
|||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| - | |||
| When due (optional) |
|||
| Date of approval |
|||
| Kathleen McCall | 10/07/2024 | ||
| RichardSimpson | Richard Simpson | 09/07/2024 |
CCXX R2 accounts (SS)
18/07/2024
2
CHARITY COMMISSION I FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examinews Report Report to the trusteesl members ot INVEST in ME RESEARCH On accounts for the year ended 30th September 2023 Charity no (if any) 1153730 Set out on pages 1and2 I report to the trustees on my examination of the accounts of the above charity I'the Trusl-l for the year ended Responslbillties and As the charity trustees of the Trust. you are responsible for the preparation basis of report of the accounts in accordan with the requirements of the Charities Act 2011 1.the Act.). I report in respect of my examination of the Trust's accounts ¢arried out under section 145 of the 2011 Act and in carrying out my examination, I have followed the applicable Directions given by the Charity Commission under section 14515llbl of the Act I have completed my examination. I confim that no material matters have come to my attention {olher than that disclosed below .1 In connection with the examination which gives me Cause to believe that In, any matèrial respect.. ac¢ounling rewrd$ woro not kept in a¢oordanc9 Wlth 60clion 130 of the Act or the accounts do not accord with the accounting records Independent examiner's statsment I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn In order lo enable a proper understanding of the accounls lo be reached. Please delete the words in the brackets if they do not apply. Signed: Date: Name: PAUL Eoo Relevant professional qualrficationlsl or body (if any): Address: c5 So3LX TrL_ IER October 2018