Let’s Do It for ME

The Let’s Do It for ME campaign launched online July 2011 by severely ill people from our homes/beds to help raise awareness of the proposal published May 2010 by UK charity Invest in ME Research (formerly Invest in ME) to establish a Centre of Excellence in UK for Myalgic Encephalomyelitis (ME), and to help raise funds to enable the biomedical research programme to get underway by October 2013.

*See 2019 review 8 Years Doing It for ME! and Our Crowdfunding 

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

In 2006 Invest in ME registered as UK charity dedicated to raising awareness of the urgent need for biomedical research into Myalgic Encephalomyelitis. 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, the charity held the first of its annual CPD-accredited international conferences to showcase and encourage biomedical research. We share the charity’s goals 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 this disabling illness.

Invest in ME Research Conference Week has grown to include closed colloquiums for researchers to share unpublished data, form collaborations, plan future projects; Thinking the Future conferences for young or early career researchers; AGM of the European ME Alliance of 15 countries, of which the charity is a founding member, and which formed the European ME Research Group in 2015, and which joined the European Federation of Neurological Alliance.  The conferences attract some of the most renowned speakers from all over the world as well as from government health departments such as USA’s NIH and CDC, and are valuable sources of education and information for healthcare professionals, doctors, nurses, researchers, ME support groups, people with ME and their carers. From 2019 the presentations are online.  Past conferences are on DVD sets available from the charity. 

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 Norwich Research Park. 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 in April 2011, 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 was born. In July 2011 we were ready to launch and joined forces with Invest in ME to help raise awareness of their 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. Let’s Do It for ME co-founder Paul Kayes is pictured left front in the Middlesborough FC tweet and co-founder Jan Laverick created our logo and Let’s Do It for ME Bear whose family grew accordingly over the years, keeping an eye on the lab work and the running totals of funds raised for the projects.  We liaise with Invest in ME Research to discuss fundraising events and ideas and rely heavily on a core planning group and fantastic supporters who 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 has forced change through their imaginative ideas, selfless efforts, dedication and positivity – a Can Do, Will Do approach to a disease where so many have suffered unnecessarily for too long.

Invest in ME (charity no. 1114035) transitioned from a charitable trust to a charitable incorporated organisation, requiring a new charity name and number: Invest in ME Research (charity no. 1153730).

 

 

 

 

 

 

 

 

 

 

Invest in ME Research – Let’s Do It!

 
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