Patient and Public Involvement opportunities in ME/CFS and other research

As Patient and Public Involvement (PPI) in research becomes more widely accepted, and expected, by funders, there already is a growing need for PPI members with lived experience of ME/CFS, Long Covid and other related conditions.

This thread is intended as a space where requests for PPI members by researchers can be made.

Ideally anybody seeking PPI members here would post the request themselves by signing up to the forum but if this is not possible requests can be made for a staff member to post on your behalf by using our contact form - should you use our contact form please be aware that all staff are patients or carers themselves so there may be a delay to processing your request.

When making a request for PPI members please include:

• a brief description of your project, including where it is based and whether it is funded or not
• the number of PPI members you are looking to recruit
• what level of engagement you wish the PPI members to have (i.e. daily, weekly, monthly, etc), and whether online or in person
• whether PPI members will be reimbursed for their time
• clear contact details
• and any other pertinent information. The more information you can give the better our members can judge whether to use their precious energy and time on contacting you.

Please note that the forum will not be seeking to filter requests and all members who decide to respond to any request here will need to judge for themselves how much personal information to give if communicating with others 'off-forum'. Also, if you take up a PPI role that reimburses you for your time, you will also need to take into account any impact that might have on any state benefits that you might receive.

 

ME Research UK have plugged this in a Facebook post today

Also on Twitter/X

 

Thank you @Andy . A request for 2 PPI members:
· ME/CFS-related Immune Research Project based at Imperial College. Proposal not currently funded
· Looking to recruit 2 PPI members
· Level of engagement: This is for an initial scoping call. If the grant is awarded then quarterly online meetings.
· Reimbursement: unable to reimburse for initial meeting, but it is factored into grant application. UK PPI standards apply.
· Via me: chris.ponting@ed.ac.uk, and I’ll pass on the request. (I’m not involved in this study).
Thanks!

 

This is my first post on the forum, although I’ve followed threads on the forum for years and really appreciate, in particular, the insightful discussions of new research. I am a new Clare Francis Research fellow at the University of Edinburgh looking for participants for PPI.

About the project:

The project will investigate mitochondrial and other cellular phenotypes induced by exposure of cell lines to ME/CFS patient or control serum. The project has been awarded funding for two years by Action for ME and is taking place at the University of Edinburgh.

About PPI:

I am looking for 3 PPI members to help co-produce and feedback on the research.

• Engagement will take place online (on Zoom) and will consist of two 60 minute meetings per year, for two years, as well as materials to be reviewed that will be circulated in advance of the meetings (expected time commitment for preparation up to 1h).
  
  
• The meetings will be attended by the three PPI members and myself.
  
  
• Participants will be reimbursed for their time, for both Zoom meetings and time needed to review materials, in accordance with UK PPI standards.
  
  
• Please note that due to timeline requirements of the project the first meeting should take place in October or November 2023.

If you would like to participate please get in touch, or let me know if you have any questions about the role or require more information. Contact me (Audrey Ryback) here: aryback@ed.ac.uk

Thank you!

 

Thank you for joining @audrey_ryback!

 

Welcome to the forum Audrey and best of luck with your project.

 

Hi all and thank you so much for the warm welcome to the forum!

These are great points, thank you for raising these Trish.

If there are any alternative forms of participating that would work for you (ie.: we could record the zoom meetings or the audio transcripts and you could feed back via any medium that works for you) do let me know.

As for international participants: I see no reason to restrict participation based on geography. It may take a little longer to work out how international payments can be made via the University, but in principle I don't think this should be an issue.

Hope this helps!

 

Hi everyone

As some on the forum already know, I am working on a grant application for a new method of public involvement in designing clinical trials, and intending to start with ME/CFS

I've just set up a new Twitter account with a link to an "expression of interest" form (and very short optional survey) https://twitter.com/Trialblazers_

The direct link to the form is here https://tinyurl.com/TrialblazersMECFS

Below is the Plain Language Summary (draft) of the application. Time is too short to put in an application next month as planned, but having a larger number patients and carers express an interest in the idea via the form will really help

Project summary

Patients, healthcare providers, and policy makers need reliable research evidence about treatments to help them make decisions or produce guidance. Randomized controlled trials are thought to provide the most reliable evidence because they have a standard design which aims to reduce bias.

Research summarizing evidence from such trials often finds too few of good enough quality to be certain about the effectiveness of treatments. Reports of summarized evidence often highlight which characteristics of trials need improvement and call for better-designed trials.

It has been acknowledged that patients and carers should be involved from the earliest possible stage in the research process. This has meant patient and public involvement and engagement (PPIE) must be demonstrated when applying for research funding.

Despite its stated commitment to PPIE, the academic research culture and infrastructure is not set up to make it easy or comfortable for researchers or patients. The academic or clinical environment where involvement activities typically take place can be intimidating for all but the most confident and scientifically literate patients. The time and energy commitment often required to contribute to a research project, for example by joining a steering group, can be a burden for people who are, by definition, less likely to be able to bear it.

The NIHR has addressed some of the barriers with its Patient Engagement in Clinical Development Service. However, this is designed to help pharmaceutical, biotech and medtech companies.

Starting with trials, Trialblazers would address the need for a range of low-commitment and high-impact ways for patients and carers to influence the direction and design of trials at the earliest possible stage.

Building on previous work delivering a series of "Build-a-Trial" workshops for patient contributors, I would like to further develop and refine this approach and develop additional ways for people to contribute.

The James Lind Alliance (JLA) is an initiative bringing patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to create a Top 10 list of research priorities for a range of conditions. My aim is for a "Build-a-Trial" exercise to be initiated for any priority question indicating the need for a trial.

I would like to refine and standardize this method of patient and public involvement and develop practical guidance so it can be applied to trials of treatments for any patient group.

To test the feasibility of the proposal I would like to involve patients and carers in designing a trial indicated by one of the Top 10 research priorities for ME/CFS:

Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?

The UK Government's recent delivery plan on ME/CFS includes two urgent calls to action to find ways to involve patients and the public in research, and to respond to PSP Top 10 priorities. Both calls would be fulfilled by this proposal and could lead to the funding of a high-quality trial of one or more drugs to treat the condition.

Funders such as the NIHR could adopt this method of involvement in trial design as standard and make the results available to applicants for both commissioned and researcher-led calls. This would reduce the waste caused by independent research groups carrying out patient involvement work to inform grant applications which may fail.

 

Edit: positions filled and no longer needed. Thank you!