Choose your top ten ME/CFS research priorities – UK survey launched

Author:

Prioritise your top ten ME CFS research questions

The ME/CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten priorities for future ME/CFS research.

In partnership with the James Lind Alliance, the ME/CFS Priority Setting Partnership is launching their second survey today.

The research questions in this survey are based on over 5300 ideas submitted by people with ME/CFS, their carers and clinicians in our first survey. Now it’s time to prioritise your top ten.

Rachel Elliot, steering group member, says: “For too long the majority of research into ME/CFS has been based upon the interests of researchers and funders, or just not happened at all. It should focus on the areas that impact people living with this disease the most. This process is our chance to make that a reality.”

Three ways to take part:

Online:

Paper:

  • If you can’t participate online, we’ll send you a paper survey. Phone or write to us with your name and address.

BY PHONE:

      • If you want to complete the survey by phone, please call Helen at the 25% ME Group on 0739 240 3591

Who can take part?

  • Anyone aged 16 or older
  • Living the UK
  • Who has ME/CFS, or
  • Who is a carer or clinician for someone with ME/CFS

Tell me about the research questions

The questions that people with ME/CFS, their carers and clinicians submitted covered a range of areas. These included:

  • Causes and prevention
  • Diagnosis
  • Lifetime risks and course of the illness
  • Treatment and management
  • Underlying mechanisms and their treatments
  • Health services
  • Causes of symptoms and their treatment
  • Social and psychological impacts and support

You can look through these questions in your own time, and search for terms that are important to you, on their dedicated webpage here.

The questions were arrived at after many hours work by the steering group and information specialist to categorise and collate all the ideas. The PSP uses plain English for these summarised questions, so they can be understood easily.

What happens to the results?

The final stage of the process is to hold a prioritisation workshop. People with ME/CFS, carers and health care professionals will be invited. Using the questions that were prioritised by you in this survey, we will discuss and finalise the top ten questions for research.

Once the top priorities have been identified, these questions will be widely published and promoted to research funders and researchers.  We’ll keep working with them to ensure research begins to answer these questions. We’ll also use the list raise awareness among those responsible for policy and strategy in lots of different areas.

All the questions submitted, including those that don’t make the top ten will be published on the website.

The ME/CFS PSP is funded by the National Institute for Health Research, the Medical Research Council and the Scottish Chief Scientist’s Office. 

For more info:

Website: www.psp-me.co.uk

Twitter: www.twitter.com/PSPforMECFS

Email: [email protected]

Facebook
Twitter
WhatsApp
Email

Latest News

reddish rectangle image with different color stripes of red coming out at a diagonal from the center. In the center is the TeachMETreatME logo. The words celebrating an impactful campaign in white font underneath the logo.

#TeachMETreatME: Celebrating An Impactful Campaign

We are THRILLED to share the rolling successes of our #TeachMETreatME campaign with you, as we report back on the amazing medical education events that have taken place so far – with many more to come in the upcoming months! (And don’t miss the global #MillionsMissing events later in the article!) Over the past several

Read More »

#MillionsMissing Week is Here: #TeachMETreatME in Action!

We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat ME by educating medical providers across our nation’s hospital systems and medical schools about myalgic encephalomyelitis (ME).  Throughout the spring, summer and fall, #MEAction teams are hosting 13 medical education events to encourage medical providers to

Read More »

#MEAction’s Jaime Seltzer Selected for TIME100 Health 2024

We are thrilled to share with you that Jaime Seltzer, #MEAction’s Scientific Director, has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year! This is a huge honor based on years of work fighting for equity for people with ME.  We intimately know the

Read More »
Scroll to Top