Georgina & Phoebe is fundraising

Endurance kayaking for Invest in ME Research

£927.00 + £189.25 Gift Aid = £1116.25
Donated to Georgina & Phoebe’s £500.00 Goal
53
Sponsors

Georgina & Phoebe’s story

We are two total novice 13 year olds taking on a huge challenge to kayak 25 miles in order to raise vital funds for biomedical research into ME. We are doing this after Georgina’s sister was hit with this horrid illness age just 14 and became very poorly. ME is a multi- system disease affecting not only the neurological system but also the immune , muscularskeletal, endocrine and cardio vascular. Its life changing in short with a quality of life generally worse than a person with end stage cancer.


Updates


Invest in ME Research

Invest in ME Research is an independent UK charity finding, funding and facilitating a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS) and promoting better education about ME in order to raise awareness of the effects of the disease on patients and families.


Invest in ME Research is run by volunteers - patients or parents of children with ME - with no paid staff.

Overheads are kept to a minimum to enable all funds raised to go to promoting education of, and facilitating and funding biomedical research into, ME.

The charity believes that biomedical research into ME is crucial in order to make progress in treating this disease. We also believe that education of healthcare staff, the media, government departments, patient groups and patients is to be a priority.


We are a small charity but with supporters who have big hearts - and a determination to get the best possible research to be carried out to find the cause of ME and develop treatments.

We have links nationwide and also internationally.

Invest in ME Research is a founder member of the European ME Alliance (EMEA), a collaboration of European national charities and organisations.

The charity was also responsible for initiating the European ME Research Group (EMERG) concept, a collaboration of European researchers from major institutes.

Recently, the charity was has initiated the European ME Clinicians Council (EMECC), a network of European clinicians who will work together and share experiences of treating ME in order to establish better standards for patient care.

The charity does not receive, and has never received funding from government or government organisations.

We believe that we need a national strategy of biomedical research into ME to produce treatments and cures for this illness.

We have always believed that the seriousness of the situation regarding ME makes it necessary for governments to provide "ring-fenced" funding for biomedical research in to ME (as was provided for HIV/AIDS) in order to address the need for development of diagnostic tests and remedial treatments. 

However, the charity does not believe in merely asking for funding - the charity has pursued of policy of raising funds itself for biomedical research in order to fund research at top UK institutes.


We believe that clinicians should standardise on usage of the most up-to-date criteria (currently we emphasise the Canadian Criteria) for diagnosis so that there is an agreed basis (noting that evolutionary improvement would be welcomed).

The charity organises an annual research Colloquium and conference regularly attracting delegates from over 15 countries and funds research at Quadram Institute Bioscience/University of East Anglia and University College London as well as influencing collaboration elsewhere, in UK, Europe and beyond.

Our conferences and colloquiums were organised from the beginning in order to provide a platform for research and a means of facilitating education about ME.

In order to bring the best education and research to bear on ME and to find and facilitate the best strategy of research into this disease the charity welcomes support for our work.

Our aim is to fund and facilitate research in order to establish an understanding of the aetiology, pathogenesis and epidemiology of ME. We hope this will lead to the development of a universal diagnostic test(s) that can confirm the presence of ME and, subsequently, medical treatments to cure or alleviate the effects of the illness

Our efforts are focused on setting up a UK/European Centre of Excellence for ME which will provide proper examinations and diagnosis for ME patients and a coordinated strategy of biomedical research into ME in order to find treatment(s) and cure(s).

Registered Charity Number: 1153730.

Find out more about Invest in ME Research

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