Hannah would like to hear from anyone with ME/CFS who uses (or has used) a diary to help keep track of symptoms. The study will comprise a series of focus groups that will help her understand the effects that diary keeping and symptom tracking can have and will lead to publication as part of her thesis.
Hannah Field, PhD Researcher at LICA, University of Lancaster
About Me
When I first got sick, back in 2011, it wasn’t clear why I wasn’t recovering. I spent the whole summer after my A-Levels sleeping, then gradually, rebuilding my strength so that I could go to university. While I was there, my health was, in short, a disaster. I missed a lot of seminars and lectures but was still met with a shrug whenever I told the doctor. It wasn't until 2018, after years of struggling, that I finally got an answer: it’s ME.
But getting diagnosed was only the first hurdle. As empathetic and understanding as my consultant was, he was open in saying that he didn’t believe there was enough quality research out there to suggest a treatment. He was already critical of GET (which has now been thoroughly debunked) and didn’t want to risk suggesting anything that could make me feel worse. What he did suggest was that I keep a diary and learn about myself.
Lots of ME patients are advised to keep a diary. Some clinics rely on symptom tracking diaries as a way to encourage patients to stay within their energy envelope. Some patients go it alone and figure out their own tracking methods and goals. And yet, there is still so little research available into what happens when people keep symptom diaries and how they may or may not affect us.
So, in 2019, when an opportunity came up to do a PhD looking at this question, I jumped at it. And, a couple of years later, I was pleased to see that in their recommendations for research, the NICE Guidelines for ME/CFS 2021 called for further research into self-monitoring management strategies, noting that “there was a lack of effectiveness evidence on strategies and tools to support people to self-monitor activity management.” I hope I can start filling that gap in knowledge with my research.
My Research
My research has so far examined the range of apps and methods for tracking available to people with ME. I have also researched the quantified self and the cultural significances and impacts of diary-keeping. But the main goal of my research is to answer the question, what happens when people with ME keep symptom diaries? To answer this question, I need help from the wider ME/CFS community.
Can I help?
If you have a diagnosis of ME, ME/CFS or CFS, and you keep a diary or track your symptoms you may participate in this research. You may also join if you used to keep a diary or track symptoms but stopped.
I am now running focus groups to ask people with ME/CFS about their experiences of keeping a diary and/or symptom tracking. In the focus group, you will join up to 3 other participants on Zoom to discuss your experience. I will lead the conversation through a series of questions over an hour.
I will start running focus groups as soon as possible.
What will I be doing?
We will have a conversation via zoom about your experience of keeping a diary. We will use a Miro board to track the conversation and record responses. The focus group will take 1 hour but as it is online, you can be anywhere you find comfortable, whether that’s at your kitchen table or your bed. And, yes, you can keep your camera off if you prefer.
There are no right or wrong answers, and no particular expected outcomes for the focus groups. The intention is to gather a variety of different opinions, so, no matter what your experience is, it is valid.
What will joining in achieve?
If you choose to join the study, you will be contributing to our understanding of diary-keeping and symptom tracking. You may also benefit from insights from other participants. I will be writing up the results of the study as part of my PhD thesis and hope to publish a paper recording the study too.
Do I have to take part?
No. It’s completely up to you to decide whether or not you would like to take part. Your participation is voluntary and you are free to withdraw up to 2 weeks after the focus group, without giving any reason.
Is there a deadline?
There is no particular deadline for this study though it should end before Christmas. I will organize focus groups according to your availability and at your convenience.
Is there a limit to how many people can get involved?
There is no limit to the number of participants; I will run as many focus groups as it takes to ensure everyone who would like to contribute may be heard. It is important to hear as many members of the community as possible to gain as broad an understanding of the experiences of diary-keeping as possible.
Who has reviewed this project?
This study has been submitted for review by the Faculty of Arts and Social Sciences (FASS) Research Ethics Committee.
I have questions, can I get more information?
Yes! Please email me, h.field1@lancaster.ac.uk and I will send you the participant information sheet and consent form for review. You can also ask any further questions you may have before you decide whether to join the study or not.
Thank you
As I live with ME myself, I understand that asking you to join a study is a big ask. So, if this one isn’t for you, then thank you for reading this blog post anyway and I wish you all the best. If you do think you are able to contribute and would like more information, please email me, h.field1@lancaster.ac.uk.