Our CEO Sonya Chowdhury discusses the importance of collaboration and working directly with people who are affected by M.E.
Early last Sunday morning, my colleague and I pitched up at the Bath Half Marathon charities’ tent. It was a not so sunny, not so warm and rather wet morning. We were there to support 10 individuals who were running in honour of someone close to them who has M.E.
Before the run, some of them called in to say hello. Excited, nervous, adrenalin-fuelled, they told us about why they were running and why they wanted to raise money for our work. Afterwards, most came back to let us know how they’d done and have their photo taken. Amazing achievements from them all, not only for completing the race and for some fantastic times, but for taking positive steps for M.E. – raising money and raising awareness.
Later this year, we will be launching STEPtember (yes, you guessed it, in September) which is about taking positive steps for M.E. We will be working with our supporters, existing and new, to help raise money to fund the promises we have set out in two new strategies that will underpin our work over the next couple of years.
In the Research Strategy, we identify our plans to fund new biomedical projects alongside enhancing what we call our ‘social policy’ work providing a robust evidence base to inform and influence. In our Empower, Support, Inform and Influence Strategy we set our plans to reach more people with our services and to do more in relation to ‘severe’ M.E.
The importance of collaboration
We have seen that collaboration brings results. One very recent example is the significant achievement of those responsible for the WOW Petition and from those supporting it. More than 104,000 signatures resulted in a debate in Parliament on the impact of benefit changes on disabled people. Without individuals and groups across the wide spectrum and diverse group that is the ‘disability field’ working together, this would not be happening.
Changes will not happen within the ‘M.E. field’ without us working together – and not just within our own arena, but also with those outside, across different disability and health groups.
However, most importantly, we need to work with those who are directly affected by the illness itself. It has been great to start work with around 40 individuals who have joined our Patient and Carer Reference Group. Some of the group have been ill for a few years, many have been severely ill for much longer.
The insight and expertise that they bring, not just of the illness but also from (mainly) previous professional backgrounds in science, health and social care, education and business, to name a few, is diverse. The one thing we all have in common is that we will not accept that all that can be done for people affected by M.E. is being done.
Some of the group are working with us to finalise the strategies I mentioned earlier and I look forward to being able to share these with you, in full, in my next blog.
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