Current research project: update from Caroline on completion of participant visits
Last week I made the final visits to participants with ME/CFS, these were the last people I will see for the current RO1 grant and I was visiting for the fifth time. As you can see from the photo, all assessments had to be made in a COVID-secure manner, sometimes seeing participants in the garden for fear of infection. As always, it was a privilege to make these visits, one of those I saw I had first visited in 2014.
The first participant I saw was struggling with her health after moving house in the past year to accommodate the life she realises, after 10 years with ME/CFS, she needs to lead. The second participant was much improved from when I met her over 7 years ago; when I went into the house, there was a radio playing, something I never encounter when people have severe ME/CFS. She is still very aware of her energy envelope, but her improved health means that she can better manage it and achieve a lot more than she was able to. When chatting, she spoke of a neighbour who had enduring Long COVID. She was alerted to this possibility before he was when he described that he did something, seemed fine, and then, as he put it, ‘I get the bill’. This is not a description I had heard used, but it does perfectly describe the post-exertional malaise ubiquitous in ME/CFS.
I shall miss you all – please keep in touch. We will make sure you get regular updates on the CureME research. We are busy applying for further grants as the scientists at the LSHTM work on your samples and we continue to release others worldwide. We must thank the US NIH for funding this work for the past 8 years since I have been at the School, and the MEA who so generously support the UK ME/CFS Biobank to allow for the continuing storage and release of samples. But most of all, I want to thank all those of you who have travelled to London or Norwich to see me or my colleagues, and for all those of you who have welcomed me into you homes – often when you just wanted to curl up and sleep – have told me about yourselves, proffered a vein, and completed endless questionnaires!
12 October 2021