We're onto our final stage...
The ME/CFS Priority Setting Partnership (PSP) is following an approach tried and tested by the non-profit making initiative, the James Lind Alliance to determine the questions that matter for ME/CFS research, from the perspective of people with ME/CFS, their carers and supporters and healthcare professionals.
Now we're holding 3 final workshops to decide the top ten ME/CFS research priorities.
We had over 100 applications for the final workshops, and will invite a diverse and representative group of individuals to take part.
The 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.
Find out more about the workshops here.
The Final Priority Setting Workshops
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. We 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.
We will be using Zoom, and will provide guidance 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 we will do all we can 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 have asked people with ME/CFS, carers and supporters and health care professionals to tell us 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 our second survey, giving a shortlist of about 15 questions which will go to the final workshops.
We now need your help 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 we looking for?
We 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 below by midday Tuesday 11th January 2022.
You can also download the form by clicking here. We will accept online, email or hard copy applications. The postal service is in high demand right now and some mail is delayed so you might choose to try and submit your form to us online if at all possible.
You can email your form to questions@psp-me.co.uk or you can return it via post but it must arrive before the closing date. This is a freepost address, so no need for a stamp:
FREEPOST Plus RTJR-TREB-AXGY
42 Temple Street
Keynsham BS31 1EH
For more information about the workshops go to www.psp-me.co.uk/workshops
Expression of Interest Form
You can also download the form by clicking here. We will accept online, email or hard copy applications. The postal service is in high demand right now and some mail is delayed so you might choose to try and submit your form to us online if at all possible.
You can email your form to questions@psp-me.co.uk or you can return it via post but it must arrive before the closing date. This is a freepost address, so no need for a stamp:
FREEPOST Plus RTJR-TREB-AXGY
42 Temple Street
Keynsham BS31 1EH
What's next?
For the final stage of our process, we are holding a priority setting workshop. This will be an opportunity for different parties to express their views, hear different perspectives (especially those of minorities) and to think more widely about the questions that have been prioritised through the survey. Through the workshop the final top ten ME/CFS research questions will be agreed.
This is an exciting opportunity to be at the forefront of future research into this debilitating disease.
We want to recruit approximately 30 people, including people with any severity of ME/CFS. People can also send a proxy on their behalf.
We’ll put out more details on how you can apply to join this workshop in the next few days.