ME/Research priority workshops
The ME/CFS Priority Setting Partnership (PSP) is holding 3 final workshops to decide the top 10 ME/CFS research priorities. Apply to take part by January 11 2022.
When and where?
The workshops will take place on Zoom:
- Saturday 5th March 1.00pm – 2.30pm
- Thursday 10th March 5.30pm -7.00pm
- Friday 18th March 2.00pm – 4.00pm
The event is spread across three dates to allow time for recovery, and there will be rest breaks in each workshop. You need you to be at all three sessions. You may of course consider naming a proxy who can step in on your behalf at any time should this prove necessary.
Guidance will be provided on how to connect if you are new to Zoom. Practice sessions will be available. Ideally you will have a computer or tablet to connect to the workshop.
Joining on a mobile device or by dialling in will have limitations, but all will be done to enable your full participation.
What are the workshops for?
The aim of the workshops is to agree the top ten questions for research into ME/CFS which matter most to people living with ME/CFS, carers and supporters and healthcare professionals who work with them. These questions will add a new perspective to the research agenda for ME/CFS.
Over the last year we people with ME/CFS, carers and supporters and health care professionals have been asked about the questions they wanted answering by research.
Over 5,300 ideas were submitted. These questions were reviewed, collated and summarised, into a long list of 59 questions. These 59 questions have now been prioritised by over 2,000 people who engaged in the second survey, giving a shortlist of about 15 questions which will go to the final workshops.
Your help is needed to finalise the top ten!
These final workshops are an opportunity for different people to express their views and hear different perspectives about ME/CFS research priorities. There is immense value in bringing people together to engage in careful consideration and quality discussion to make shared decisions and reach genuine consensus.
Who are they looking for?
PSP want to recruit approximately 30 people who have lived experience of ME/CFS, carers and supporters including family, and healthcare professionals working in this field. This includes people with all severities of ME/CFS.
What do I need to do at the workshops?
You should be prepared to share your experiences and opinions, and listen carefully to other people, in a series of small group discussions. There will be about five people in each small group at the workshop.
Together, you will be helping us to make decisions about the top 10 research questions you think should be prioritised.
How do I apply?
Complete the expression of interest form by midday Tuesday 11th January 2022. Download the form
