Q&A for UKMEB COVID-19 study (for our current participants)

Q. “I participated in the UK ME/CFS Biobank study as a control (i.e. I don’t have ME/CFS); did you mean to contact me?”

A. Yes! We are inviting all participants of the UK ME/CFS Biobank Study to join this sub-study, whether they have ME/CFS, MS or are a healthy control. We would like to gather information on your health during the time of COVID-19 so we can compare this among the different groups in our cohort.

Q. “I have not had COVID-19, do I need to do anything now?”

A. Yes! If you agree to participate, we ask that you fill out the Participant Questionnaire (PQsym) now (or as soon as you are able to) and then again in 2 months, 4 months, 6 months, and 12 months’ time even though you have not had COVID-19. This allows us to look at what your health is like without COVID-19 to compare with people that do have COVID-19, or to compare with your health if you do start to experience symptoms later.

If during this time you start to experience COVID-19 symptoms, we then ask you to:

1. Fill out the PQsym once a week for 4 weeks, and then in 2 months, 4 months, 6 months, and 12 months’ time (i.e. start the schedule again)
2. Fill out the COVID-19 Symptom Diary each day for 21 days to give us an idea of symptoms related to COVID-19.

Q. “I have already had COVID-19, what should I do?”

A. This depends on when you first started having symptoms.

If your COVID-19 symptoms started within the past month:

1. Fill out the PQsym weekly until you have had symptoms for 1 month, and then in 2 months, 4 months, 6 months, and 12 months’ time (e.g. if your symptoms started 2 weeks ago, fill out the PQsym each week for the following two weeks, then in 2 months, 4 months, 6 months, and 12 months’ time)
2. Fill out the COVID-19 Symptom Diary each day until you have had the symptoms for 21 days (e.g. if your symptoms started 2 weeks ago, fill in the remaining 7 days)

If your COVID-19 symptoms started more than a month ago:

1. Fill out the PQsym according to the first instructions (i.e. now, and then again in 2 months, 4 months, 6 months, and 12 months’ time)
2. Fill out the COVID-19 Symptom Diary just once, trying to answer the questions according to how you felt at the time you had the symptoms.

Q. “Will we need to remind ourselves each time we must fill out a questionnaire?”

A. No. We understand how difficult it is to remember to fill out something – particularly after months and months! We have added a question to the consent section of the PQsym that asks:

Q. “Do you wish to be contacted at regular intervals by the CureME Research Team in order to be prompted to remember to complete this questionnaire?”

A. If you would like us to send you email reminders, please select “Yes” and we will notify you by email that you are due to fill in a questionnaire. If you have already filled in the consent question prior to this question being added, please contact us at mecfsbiobank@lshtm.ac.uk to let us know you would like email reminders and we will log your preference in our records.