TWO WEEKS TO SEND IN YOUR RESEARCH IDEAS

Author:

Deadline approaching - ME CFS PSP graphic
Share on facebook
Share on twitter
Share on email

Help prioritise ME/CFS research by filling in this survey

A major UK project is looking for your input. They want to know what research you think should be funded in the future, and the deadline for adding your ideas is fast approaching. Your responses must be in by Monday 5th July 2021.

Find out more and add your ideas now: psp-me.co.uk/take-part

But who are they?

The ME/CFS Priority Setting Partnership is run by a steering group of people with ME, carers and clinicians. The project is funded by some of the largest research funders in the UK – the National Institute for Health Research, the Medical Research Council and the Scottish Chief Scientist Office. The process has been carried out over 100 times in other disease areas, resulting in new research findings, treatments and improved quality of life.

So what do I have to do?

The short survey asks you what questions you think research should answer about ME/CFS. You can write as little or as much as you like. They want you to think about your experience of ME/CFS. If we could answer any questions, which ones would have the most impact on your ME/CFS, or your ability to care for or support those with ME/CFS?

Take part in the first survey here: psp-me.co.uk/take-part

Remember the deadline is Monday 5th July.

This project is aiming to kickstart a new era of research into ME/CFS. An era that puts the priorities of those most affected by this disease first. It’s taking place at the same time as another separate project: DecodeME, the largest ever DNA study of ME/CFS, and both are modelling excellence in patient and public involvement.

Claire Dransfield, Research Officer and Coordinator of the ME/CFS Priority Setting Partnership, urges everyone to get involved:

“Your ideas matter, your experience matters, your priorities matter. This project is a powerful example of the importance of putting people affected at the heart of decision making, and has already enabled over 850 people to have their say. But we want to reach 1000, so take part before the 5th July deadline!”

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

1 thought on “TWO WEEKS TO SEND IN YOUR RESEARCH IDEAS”

  1. This is CFS research you are asking for. It has jackshit to do with M.E.. CFS gets loads of funding that leads to no where because to know how to treat something you need to understand what the person has wrong with them to begin with. That starts with a history and in depth investigation of persons issues. ME/CFS is CFS criteria and not related to M.E.. its not a Diagnosis of anything either.

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Connecting Black People with ME and/or long Covid in the UK

Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the

Read More »

Severe ME Artists Project

#MEAction is excited to announce our Severe ME Artists Project which will feature work from those within the severe ME community in honor of Severe ME Day on August 8th! This project will be an opportunity for those with severe ME to showcase their artwork (whether it be writing, photography, drawing, singing, or any other medium that illustrates their talents) with multiple ways to participate based on a person’s energy levels.

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top