Sonya Chowdhury is the chief executive of action for M.E. She chronicles a working week leading the charity, which has seen demand for its services increase during the coronavirus pandemic.

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Action for M.E. is a national charity that empowers and supports children, young people and adults living with this chronic neurological condition. The charity has also been at the forefront of responding to the pandemic, with the emergence of long Covid putting the spotlight on our understanding of post-viral conditions and the experiences of those living with these chronic, fluctuating and often debilitating illnesses. Sonya documents what a week in her working life looks like during this challenging time.

Monday

My week starts with a non-working day. At Action for M.E., we understand the importance of work/life balance and the need for everyone to have time to reset and switch focus to other priorities in life. For many people living with M.E./CFS (chronic fatigue syndrome), their condition and symptoms fluctuate so its importance for us as an employer to have flexible working practices and the right support in place. Before the coronavirus pandemic, I travelled a lot for work with frequent trips to London for meetings with government officials, funders and partners so I condensed my hours over four days to manage this. Now that working life can be dominated by time online and endless Zoom meetings, it feels even more important to have that breathing space away from the phone and laptop.

Tuesday

Today starts with a weekly huddle with my deputy chief executive, Ruth. With our whole staff team of 26 working remotely, this regular contact is more important than ever to make sure we are both up to speed on operational and health policy issues. At lunchtime I join a World Health Organisation global meeting to advance the understanding of ‘long-Covid’. The fascinating presentations include an international research study on the impact of long Covid on people’s lives. In the evening I have a call with a donor who is also interested in the potential overlap between long Covid and M.E. – it’s a hot topic for us and Action for M.E. is working to support and share learning across both communities.

Wednesday

This morning I catch up with a board member from another M.E./CFS charity to talk about potential work together. One of the things I love about working with the M.E. community is how active and engaged people are – I see this every day in my email inbox and on social media. Today I respond to an email from someone who wants information and support as they have concerns about the impact of the coronavirus vaccine on their M.E./CFS and to people who have messaged me on Twitter. I am also in touch with The Guardian today to support a journalist with a piece about chronic diseases, such as M.E./CFS, not being included in priority group six for the vaccine. As a charity, we hold a monthly ‘Wellbeing Wednesday’ for staff and trustees to get together socially, connect and have some fun. Tonight, I’m leading a curry cooking session via Zoom. Although a little nerve-wracking, it’s great to get everyone together virtually, and there’s lots of chat as we cook together.

Thursday

Today starts with our quarterly board meeting and we welcome two new trustees who bring valuable experience of finance and organisational leadership expertise to the charity. The board hears a presentation from a frontline member of staff in our Crisis, Support & Advocacy Service on our work with children and young people. The rich data about service use and outcomes is brought to life with personal stories from those using the service and highlights the increased demand for support from people living with M.E. because of the pandemic. It’s an issue that the whole board is acutely aware of and we have invested heavily in expanding services to support more people and to increase access for currently underserved communities, including those from differing ethnic minority groups and people who are more severely affected by M.E./CFS. During the afternoon, I have several meetings with funders.

While the pandemic has been really challenging for many charities, with the cancellation of mass participation events and other fundraising activities, we have been fortunate to have positive relationships with several funding organisations who are keen to work with us to support those living with M.E. through this particularly challenging time and beyond. We discuss the need to support people with M.E./CFS while working collaboratively and strategically to create change for the future. I end the day with a meeting with another medical charity. They share many of our challenges around diagnosis, stigma and lack of research so we discuss how we can collaborate and draw other similar charities together to amplify our collective voice and influence change for our respective service users.

Friday

I have a rolling programme of one-to-one meetings with all colleagues across the charity to hear about their work and any issues on the horizon. Friday is also my weekly huddle with the chair of our board. He is an excellent sounding board and we have a useful debrief on the previous day’s board meeting. Our annual governance audit is due shortly, undertaken by our vice chair, so I spend some time preparing the data for this process. The quantitative data is brought to life by the qualitative insight from my discussions with staff and trustees. It gives me much to reflect on and feed into the development of our wider strategy. Towards the end of the week, there is a bit more space in my diary to catch up.

The Coronavirus pandemic has led to a fast-changing external environment, with increased demand for services and rapidly emerging health policy. It’s important that we keep pace so that we can support those living with M.E., without losing sight of the daily challenges for those with a chronic, fluctuating illness. The pandemic has also created opportunities for us to work closely with other organisations and an appetite for research into post-viral conditions that we have not seen before.

I end the week with a regular catch-up with the CEO of an organisation that we are entering into a joint venture with and a meeting with the US National Institutes for Health to discuss further research collaboration. While the pace of change can be breathtaking at times, I feel optimistic about our work towards a greater understanding of M.E. and ultimately a cure.

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