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

Discussion in 'ME/CFS research' started by Andy, Aug 30, 2023.

  1. Andy

    Andy Committee Member

    Hampshire, UK
    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.
    Last edited: Aug 30, 2023
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

  3. Chris Ponting

    Chris Ponting Established Member (Voting Rights)

    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:, and I’ll pass on the request. (I’m not involved in this study).
    forestglip, hotblack, Milo and 19 others like this.
  4. audrey_ryback

    audrey_ryback New Member

    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:

    Thank you!
  5. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    A very warm welcome to the forum Audrey. Thank you very much for being a member here and for incorporating people with ME/CFS into your research team.
    Last edited: Oct 2, 2023
  6. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Aotearoa New Zealand
    Solstice, DMissa, Ash and 18 others like this.
  7. Jacob Richter

    Jacob Richter Established Member (Voting Rights)

    Welcome to the forum Audrey and best of luck with your project.
    Solstice, Ash, ahimsa and 13 others like this.
  8. Trish

    Trish Moderator Staff Member

    Hi Audrey, thanks for joining us. I hope you can find some people with ME/CFS to join your PPI group. In theory I might have been interested, but I'm not well enough to do Zoom meetings, so would be no use to you.
    A question - do the PPI members have to be UK based?
    Milo, Solstice, Ash and 17 others like this.
  9. audrey_ryback

    audrey_ryback New Member

    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!
    hotblack, Solstice, Ash and 10 others like this.
  10. Trish

    Trish Moderator Staff Member

    Thanks for your thoughtful response, @audrey_ryback. I hope your reply will open up possiblities for others to consider applying.

    I am already overcommitted with forum related stuff, so probably should step away from this one.
    JellyBabyKid, Solstice, Ash and 9 others like this.
  11. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

    Oxford UK
    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)

    The direct link to the form is here

    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.
    hotblack, Sean, Milo and 8 others like this.
  12. DMissa

    DMissa Senior Member (Voting Rights)

    Edit: positions filled and no longer needed. Thank you!
    Last edited: Nov 19, 2023
  13. EmmaS302

    EmmaS302 Established Member

    Hi All,

    A brief description of your project: I am a researcher at Newcastle University, and we are looking to secure some funding to research ME/CFS in men - the project is not currently funded, this PPI is to inform the grant application we are working on.

    The number of PPI members you are looking to recruit: Five people in total. Either men with a diagnosis of ME/CFS, or those with lived experience of ME/CFS in men e.g. carers/parents/partners. We are looking for people who are currently living in the UK.

    What level of engagement you wish the PPI members to have (i.e. daily, weekly, monthly, etc), and whether online or in person: We will organise one online group session (approx. 1 hour with breaks) but realise that this may not be accessible for all, so there will also be options to provide thoughts to the questions asked during the group discussion via email/phone/1:1 online meeting. We will also be asking how we can make the planned study as accessible as possible for men with ME/CFS going forward.

    Currently, we are seeking one off feedback, but if we secure funding for the future planned study there would be the opportunity to have ongoing involvement at each stage of the project at a level that suits the PPI individual member.

    Whether PPI members will be reimbursed for their time: We are in the process of trying to secure funding to reimburse participants for their time for this initial PPI phase, although we are unable to guarantee anything at this stage.

    We would ensure that funding for PPI is costed into the planned grant application and PPI members would be reimbursed for their time.

    We will adhere to the UK standards for PPI throughout, and continually reflect on how we can improve our PPI methods and process.

    Clear contact details:

    Please get in touch if you are interested in getting involved, or would like to know more before making a decision.

    Many thanks,
    EzzieD, Sean, Hutan and 5 others like this.
  14. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    Hi Emma I’m not asking this as a potential participant but ME/CFS in men is very broad, can you give some details of the type of research you are considering?
    EmmaS302, Sean, Hutan and 6 others like this.
  15. EmmaS302

    EmmaS302 Established Member


    Thank you for your comment -- of course.

    In terms of the research area, it is intentionally broad at this stage as one of the aims of the project is to "identify which areas of research men with ME/CFS think are most important".

    It will be a mixed methods study including an online survey with a smaller number of interviews, but the exact questions we ask will depend on the research priorities we identify through PPI. We will also be asking for feedback on the planned methods, and how we can make things more accessible.

    We anticipate that areas of interest may include:
    - Barriers to timely diagnosis, and access to care.
    - The stigma experienced specifically in men, and the impact of this.
    - Identification of health needs which require investigation in future research projects - including those related to quality of life.
    - Use, and experience of support groups.

    I hope that helps, in short -- more high-quality research is urgently needed investigating ME/CFS in men. Specifically, to identify which areas of research men with ME/CFS feel are most important to them, to understand their experiences of living with the disease, to identify sources of, and potential ways to reduce stigma, and improve treatment and access to care.

    I realise there are a few small qualitive studies investigating ME/CFS in men, we hope to expand on these, and use survey methods to reach more people.

    I hope this covers everything you need, but please let me know if you need more detail, or would like more explanation.

    Many thanks,
    Last edited: Jul 12, 2024 at 4:32 PM
    MEMarge, Kitty, Sean and 4 others like this.
  16. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    @EmmaS302 thats useful for people to know that the focus is on social aspects rather than a biological study thanks
    EmmaS302, MEMarge, Kitty and 4 others like this.
  17. Denise

    Denise Senior Member (Voting Rights)

    @EmmaS302 - Are you including those who were not assigned male at birth in your work?
    EmmaS302, Kitty, Amw66 and 3 others like this.
  18. Sean

    Sean Moderator Staff Member

    Hi, Emma. Appreciate you engaging here.

    Can I suggest you not use the word 'feel'? It feeds into emotional interpretation bias. The word 'think' is better. Avoids all that bias from the start.

    EzzieD, EmmaS302, Trish and 8 others like this.
  19. Chris Ponting

    Chris Ponting Established Member (Voting Rights)

    Hello all. Here's a new PPI opportunity to be involved in a short-term project:
    1. Project Description: Our project aims to investigate the predictive power of various molecular biomarkers and other non-molecular data for detecting ME/CFS and differentiating it from conditions with similar symptoms, while also understanding the disease’s impact on these biomarkers. The project is based at the University of Edinburgh and is fully funded.
    2. PPI Members: We are looking to recruit two PPI members to join our project and provide insights and feedback on lived experiences, study design, data interpretation, and dissemination of the results.
    3. Engagement Level: For three months, starting either in July or August 2024, fortnightly online meetings will be held. These meetings will last approximately 30-60 minutes, adjusted according to energy limits. There is no need for PPI members to prepare in advance. Additionally, please note that this project may be extended in the future
    4. Reimbursement: PPI members will be reimbursed for their time, under UK PPI standards.
    5. Contact: or

    Ron, Comet, MEMarge and 11 others like this.
  20. EmmaS302

    EmmaS302 Established Member

    Of course - thank you very much for your feedback.

    Hugely appreciated, we really want to make sure we get wording right so will correct this going forward.

    Sean, MEMarge, EzzieD and 3 others like this.

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