My exciting trip to London for the launch of Action for M.E.’s new strategy

Action for M.E. at the Houses of ParliamentYesterday I attended the most exciting event in my 2016 calendar – the launch of Action for M.E.’s new five-year strategy at Speakers House at the Houses of Parliament in London.

Action for M.E.’s Chair of Trustees, Alan Cook CBE, hosted the reception at Speakers House, by kind permission of the Speaker of the House of Commons, the Right Honourable John Bercow MP.

The event was held to launch the new strategy, to raise awareness amongst MPs and journalists, and also to thank volunteers and supporters of the charity.

My long day of travelling down from Bradford started with torrential rain. We’re so hi-tech these days that rain can affect the electrics in the rail system, meaning all trains from Leeds to London King’s Cross were cancelled! Fortunately, I’d listened to mum and had got to the station very early! I had to take another train to York for a replacement one and arrived into London on schedule. Phew!

I took the bus overground which takes much longer than the two tube journeys I usually take to stay at my sister’s. I planned to do this to cut down on the amount of walking so I could pace myself and reserve my energy to make the most of the Speakers House event. The other advantage of taking the bus is getting to see more of the city. This northern country bumpkin always finds it exciting to go to London and see things like the famous landmarks and the iconic red double-decker buses.

Another couple of legs of my journey and at last I made it to Speakers House. Jane, who is a lovely Twitter friend and a member of Action for M.E.’s research panel, had kindly waited outside Portcullis House to greet me, along with Dr Gregor Purdie, one of the two medical advisers to the charity.

While going through security and waiting to be escorted through the grounds to Speakers House, I recognised some more online M.E. friends from their profile pictures and we introduced ourselves.

Shaking hands with Alan Cook, Chair of Trustees
Being greeted by the Chair of Trustees
Credit: Andy Colbourne
The room where the event took place had wooden panelling with huge portraits and green leather seats like the benches in the House of Commons. There was a lovely warm welcome from the charity’s CEO, Sonya Chowdhury, and Alan Cook, Chair of Trustees.

After some mingling, it was time for the speeches. Alan started off by welcoming the one hundred or so guests. He spoke about how he had become Chair of Trustees due to his daughter becoming ill with M.E.

Alan then introduced Catherine Hale, who is another volunteer with the charity. Catherine spoke about her M.E. story, which has things in common with my own in that we first became ill as active teenagers but recovered enough to go to university, only to become much more ill later in life. I was very emotional hearing Catherine bravely speak about her journey and it took me back through some difficult memories.

Catherine went on to remember Emily Collingridge who had the “very severe” form of the illness which Catherine also had for a time, where someone is totally bed-bound, tube-fed, and unable to have visits from family and friends. Emily very sadly passed away at the age of 30. Even though Emily was so ill, she managed to write a book and set up a website to help others trapped in her own situation. Emily wanted something positive to come out of her experiences and did this selflessly. We all pledge to continue Emily’s work to speak up for those who are too ill to speak up for themselves and build upon her legacy to improve the lives of people with “severe” and “very severe” M.E.

Sonya spoke about her work as CEO for the charity and outlined the strategy for the next five years. The charity will continue to work to end the ignorance, injustice and neglect experienced by people with M.E. by:

  1. continuing to improve the lives of people with M.E. through the charity’s Online M.E. Centre and the welfare information and support service. A new national advocacy service and other new services will be developed to directly reduce the isolation experienced by many people with M.E.
  2. inspiring others at all levels, nationally and internationally, to ensure a better understanding of the needs of people with M.E. in order to enhance the care and support that people in the UK receive.
  3. investing in change by raising more money to reach more people, have more impact and be more effective, securing more funding in research and creating a stronger voice to support and advocate for the change people with M.E. desperately need and deserve.

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After the speeches I chatted with some other supporters and volunteers with M.E. about the work we’ve done to raise money and awareness. It was lovely to make some new friends and to meet online friends in person. Yvette Cooper MP was around for a while, as she has an interest in M.E. because she had the illness while she was at university.

I also spoke with Dr Purdie again in more detail about his work with M.E. specialist services and educational videos he has made to help GPs care for people with M.E. We also talked about my voluntary work with the charity in raising awareness of M.E. within the pharmacy profession, as the illness isn’t currently covered in the undergraduate pharmacy degree and we will be keeping in touch.

I then spoke with Professor Julia Newton, who’s the other medical adviser to the charity. She’s a very highly regarded biomedical researcher and M.E. specialist. We talked about her current research projects into muscle and autonomic nervous system dysfunction in M.E. She has asked if I could help with providing pharmacology information for one of her projects, which is very exciting.

I also chatted with my lovely line manager, the charity’s Head of Communications and Policy. We talk on the phone and email a lot but don’t often get to chat in person.

The evening was over far too quickly but it was such a special and grand occasion that will stay with me as an evening to remember.

With huge thanks to the Speaker, the staff at Speakers House, and Action for M.E. staff for inviting me, helping me with my mobility and making me feel so welcome, special and so appreciated. I have come away even more passionate about the charity and my voluntary work and really look forward to cracking on with everything after a short break.

Read more about Action for M.E. and the new strategy

Please donate to support Action for M.E.’s valuable work towards a world without M.E.

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