From InterAction 106, published December 2020
Glad to see the back of 2020? We asked nine people whose lives have been touched by ME to give their reflections on the past year and their hopes for 2021.
Sonya Chowdhury, Chief Executive, Action for ME “It goes without saying that 2020 has been a very, very tough year and one that we would not hope to repeat. However, there have been three significant things to celebrate, each bringing opportunity for the future: the Priority Setting Partnership announced in March, the £3.2m DecodeME funding announced in June and the NICE guideline review draft which was released on 10 November. As I look to 2021, we have to really make the most of these two opportunities. They are a starting point and we must work collaboratively to ensure that they are the start and not the end. We will continue to work together with others to identify priorities to inform a robust research strategy for the UK which builds on the DecodeME funding and work towards securing treatment options and care pathways for people with ME”
Alec Finlay, Poet and artist “Medical professionals with long-term coronavirus have pleaded they should not be consigned to the same ‘basket’ as people with ME, and argued treatments should not centre on graded exercise. People with M.E will be forgiven for finding this extraordinary. Will there be a sea-change in the willingness of medical professionals to listen to people’s descriptions of these diseases? People with experience of ME stand in solidarity with those who fall victim to coronavirus, especially frontline medical staff, and many are willing to help them adapt, but I hope one disease will not be left behind, while another is given the care it deserves.”
Dr Katrina Pears, volunteer member of InterAction editorial board “Even without the Covid monster, 2020 has been one rocky year from me. Me and my husband lost our very much wanted baby boy in January. That was the start of our 2020, words cannot describe how difficult this was. Covid came at a time when things had only just started to feel ‘normal’ again. We are hoping for a much brighter 2021, with hopefully some rainbows, not to mention hope for a Covid vaccine and more ME research to come out of long Covid. ”
Patsy Quinn, InterAction columnist “Two centuries ago George Washington Burnap wrote that the 'grand essentials' to a happy life are something to do, something to love and something to hope for. This is a mantra that all of us - healthy and not-so healthy – can appreciate more than ever having lived through 2020 and all the restrictions it has brought in its wake. That is why, for 2021, I wish you something to do that you enjoy; something to love that loves you back; and something fun to look forward to, especially if that’s a world free from a certain Coronavirus. ”
Andy Devereux-Cooke, Management Group, DecodeME "The standout moment of 2020 for me has been my involvement in the DecodeME study. The culmination of many years of hard work by others, including Action for ME's very own Sonya Chowdhury, this not only represents a significant, and much needed, change in direction of ME/CFS research in the UK but is a wonderful example of how different parts of the patient community can work well together in support of a common goal. Looking forward, hopefully future studies will follow DecodeME’s example of patient involvement, taking advantage of the depth of experience and knowledge in our patient population.”
Philip Marsden, Trustee, Action for ME “Wow, what a roller-coaster of a year it’s been! We had our financial successes alright – raising £169,710 in the Big Give Christmas Challenge and bringing the year to an end with ample reserves. But then we were hit by Covid19 and we had rapidly to make some very tough decisions. We’ve got through it and now we have the DecodeME project to co-lead, and the Priority Setting Partnership to co-steer, alongside providing increasing support for everyone with ME and their carers. So we are definitely on the ‘up’ again.”
Josh Vince, Fundraising Officer, Action for ME “It has been an unquestionably difficult year for fundraising as a whole, but community and events fundraising has been hit particularly hard due to its very nature. With the majority of major events, such as the London Marathon and Great North Run, being cancelled or postponed due to the Covid-19 pandemic, many within the charity sector have seen a dramatic reduction in income. With the next 12 months still shadowed by a cloud of uncertainty, many are understandably concerned by what the New Year will bring: but it’s not all doom and gloom – we have seen the birth of new virtual fundraising initiatives and watched our fundraisers interact with their supporters in different ways. I have been particularly struck by the incredible efforts and perseverance of our fundraisers who have showed tremendous levels of innovation and grit to succeed in raising vital funds to support people with ME, even in such challenging times. These are all things that leave me feeling excited about what community and events fundraising at Action for ME has in store and I look forward to working with you all in the future.”
Sue Hardy, Action for ME Trustee “2020 has tested us all. No one could have foreseen the far reaching effects of this pandemic. Many lives have been affected and changed forever and charities such as ours have lost vital fundraising, and yet their unique services are needed more than ever. I am delighted with the way Action for M.E. has responded during the Covid-19 crisis in setting up the Crisis, Support and Advocacy Service to help people with ME and ME symptoms. This will be so important going forward, with the emergence of Long Covid and the work that we can assist with in the year ahead. The board of Trustees remain as committed and hardworking as ever to representing the needs of the ME community.”
Clare Jewkes, carer for husband Stuart who has severe ME “2020 has been challenging but we’ve tried to make the most of the good minutes, hours and days. Next year has so much potential for change in the ME community. We will be watching the DecodeME study with interest and (with trepidation) the revision of the NICE guideline. Life is so uncertain, I would be grateful for a peaceful and healthy 2021 for all.”
