Small Charity BIG Cause

Invest in ME Research (formerly Invest in ME) is a small UK charity with a BIG cause. Invest in ME was first formed as an organisation in 2005, by people with ME and the parents of people with ME, with chairman Kathleen McCall being instrumental in forming the new group based in Hampshire.

In 2006 Invest in ME became a UK registered charity dedicated to raising awareness of the urgent need for biomedical research into myalgic encephalomyelitis (ME). Having direct knowledge and experience of what ME sufferers and their loved ones are going through the charity wanted to do more than just help ME sufferers and their carers cope. That same year Invest in ME held it’s inaugural CPD-accredited International ME Conference to showcase and encourage biomedical research. The Invest in ME International ME Conferences are now an annual event in May. The conferences attract some of the most renowned speakers from all over the world and are valuable sources of education and information for healthcare professionals, doctors, nurses, researchers, ME support groups and people with ME.

2015 marked the 10th year of the conferences and the 5th year of Biomedical Research into ME Colloquiums. The colloquiums allow for clinicians and researchers to discuss amongst themselves ways to collaborate and to progress knowledge and opportunities for research. The charity is at the heart of European cooperation with the formation of a European ME Alliance involving 13 countries in Europe and also has links with researchers and institutes in Australia and USA. In 2012 Invest in ME joined forces with the Alison Hunter Memorial Foundation of Australia to form a Clinical Autoimmunity Working Group. The charity’s goals, which we share, are for an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of ME to be achieved through a national strategy of biomedical research into ME. This should lead to the development of a universal “thumb-print” test for diagnosis of ME and, subsequently, medical treatments to cure or alleviate the effects of the debilitating illness.

In 2010 Invest in ME announced its bold plan to implement a national strategy of biomedical research into ME and a UK Centre of Excellence for the disease based at the University of East Anglia in Norwich. The centre will provide clinical assessment, diagnosis and treatment for patients and training and information for healthcare staff and work collaboratively with international researchers. Thanks to an EDP news story on the proposal featuring Kerry Newnham from Lowestoft as a case study, who had at that point spent 14 years of her life bed-bound in a darkened room because of severe ME, the idea for Let’s Do It for ME had been born. In July 2011 we were ready to launch and joined forces with Invest in ME to help raise awareness of their bold plans for a Centre of Excellence, and vitally, the funds necessary for the research.

Let’s Do It for ME is run by ME patients who have the same objectives as the charity – high quality biomedical research resulting in a better understanding of the pathogenesis of ME as well as in the development of appropriate treatments. Jo Best formed the idea for Let’s Do It for ME and runs it along with co-founders Paul Kayes (pictured left front), and Jan Laverick. We work closely with Invest in ME Research to discuss fundraising events and ideas and who keep us up-to-date with the status of the proposal. We rely heavily on a core planning group and team of supporters who have come up with visionary ideas for unique events and challenges to raise funds – all to ensure people with ME get the vital biomedical research they so need and deserve. The campaign has supporters from all over the world and it has forced change through imaginative ideas, selfless efforts, dedication and positivity – a Can Do approach to a disease where so many have suffered unnecessarily for too long.

In February 2015 our fundraising total reached £500,000! The charity now has two major high-quality research projects underway – probably the two most important research projects for the future of ME research in the UK – and is building a foundation for translational biomedical research which will allow a strategy of further research and education of medical students to be enhanced. For ten years Invest in ME Research conferences have brought together patients, researchers, clinicians and healthcare staff and allowed knowledge and experiences to be shared. Their research colloquiums are bringing together high-calibre international researchers that can help us understand the cause/s and pathomechanisms of ME. Together we are trying to improve the future for people with ME and their families and after reaching a milestone of £1/2 million we are ready to reach our next target of £1 million.

The Invest in ME Research strategy of bringing in researchers from other fields to help and improve research into ME has been successful and well worth the effort and cost. The charity’s proposal for a Centre of Excellence for ME is possible to achieve and it has set a target which can be reached if enough support is given. Everyone involved is a volunteer, there are no salaried staff. All money raised goes directly towards the charity objectives – either to organise conferences, produce educational material, put towards campaign work for ME or to go directly to research and projects devoted to biomedical research.

Clinician’s fees and examinations will be funded by the NHS. No new building is required. Patients will be examined by the ME consultant at either Norfolk and Norwich University Hospital or a local community hospital. Currently the NHS consultants involved in Invest in ME (Research) funded research projects are Drs Saul Berkowitz at University College London Hospital and Amolak Bansal at Epsom and St Helier Hospital.

Donations made to the Biomedical Research Fund (BRF) will be used for the following:
Biomedical Research into ME
Education Regarding ME
Conferences related to ME
Expenses in Sponsoring Presenters to Speak at Conferences
Cost of sponsoring PhD students performing biomedical research into ME
Set up and running of ME Clinic treating severely affected patients with ME
Assisting with equipment and other costs of researchers performing purely biomedical research into ME.
To see if there have been any updates/additions to the use of the BRF since we added this information check the Invest in ME Research website here.

Donations can be made to specific research projects via the Rituximab Trial Fund and Gut Microbiota Projects Fund. Everyone involved is a volunteer. The charity has no salaried staff all work is done for free so you can be assured your donation is going towards essential costs involved in moving things forward and making progress for people with ME however you donate.

LAST UPDATED MARCH 2015

Invest in ME (UK charity no. 1114035) are transitioning to a new charity format called a charitable incorporated organisation (CIO) and a new charity name and number are required. The charity’s new name is Invest in ME Research (UK charity no. 1153730).

IiMER

Invest in ME Research – Let’s Do It!