The Final Priority Setting Workshops
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 1800 people responding to our second survey, giving a shortlist of about 15 questions which will go to the final workshops.
We’re now preparing these final workshops.
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.
You can find a detailed guide to the final prioity setting workshop process on the James Lind Alliance website. Or scroll down to find out more about some frequently asked questions.
We had over 100 applications for the final workshops, and will invite a diverse and representative group of individuals to take part.
Workshop FAQs for invitees
Yes, we will ask you to read all the questions and rank them before the workshop. If this feels difficult, we ask you, as a minimum, to select your top three, and lowest three priorities.
Share your views! Contribute to the discussion, and listen carefully to others. There will be facilitators there to guide the discussion.
Yes of course, if you feel more comfortable that way.
Yes, we can arrange for you to use a pseudonym during the workshops, as long as you let us know in advance.
There will be a quiet room available to join should you find any topics or conversations distressing. This will be in the form of a separate Zoom call that can be joined at any time where a member of the team will be available to talk to you.
At the end of the workshops, we will provide contact phone numbers and websites for services where you can access support (nationally and locally).
You only have to share what you feel comfortable sharing. The main thing is you are able to advocate for the research questions you consider to be priorities and why you consider them to be important, while listening to others views too.
Sometimes we do like to record parts of the workshop. We’ll ask for your permission to record parts in advance. If you prefer not to be recorded, or don’t want your photo taken that’s fine.
We will pre-record the information parts of each session so that people can watch them ahead of time.
Each of the workshops will be held on Zoom and include a rest break.
Participants may name a proxy to attend on their behalf if they can only attend part of the workshops and this enables accessibility.
If you have any other needs please email us at questions@psp-me.co.uk and we will do our best to accommodate the.
All participants will be required to follow Chatham House Rules. This means that participants are free to use the information shared in the workshops, but must not reveal who said what. We will also ask people not to disclose the personal stories of others outside of the workshop, without explicit permission to do so.
Participants can choose whether or not they are named as attendees of the workshops.
We’ll share the top ten questions afterwards, and explain more about how they were reached. We may share quotes from participants, but will ask them first.
It is JLA policy to set ground rules around respect and confidentiality. This will be done at the start of the workshop and in each small group working session. The facilitators are there to ensure everyone has their say. If at any time you feel uncomfortable about anything that is said or done, please alert your facilitator or one of the PSP team.
Information provided to applicants:
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 by midday Tuesday 11th January 2022. (Note the deadline has now passed).