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

Thank you very much for your important question. Not at this stage of the project due to the capacity of the research team, but we are aware that this is also a very important area of research and hope to consider going forward.

*Edit* I am revisiting this with the research team as I want to make our research as inclusive as possible -- we are a small team but I know the value of ensuring as many people are represented as possible. We need to be pragmatic, but will get our thinking caps on as how best to proceed.

 

I hope you and your team can make inclusion happen.

 

Hi all,

I'm a new PhD student with Prof. Chris Ponting at the University of Edinburgh, looking for PPI participants.

The project is to follow up the findings of a case study that I published last year, doi: 10.1186/s12967-023-04711-5, which describes a patient with a severe ME-like condition whose unusual reaction to certain steroid treatments inspired a novel hypothesis involving excessive activation of the gamma amino butyric acid type A receptor (GABAAR) by neuroactive steroids. Subsequent genetic analysis identified a structural variant that affects the exact pathway implicated by the hypothesis. Transcriptional and biochemical studies suggested that the enzymes affected by the variant are indeed altered in a way that closely matches the clinical presentation.

I now intend to assess the frequency of variants in the same genes in a large population of patients relative to healthy controls, conduct RNA sequencing on samples from the original patient and (if funding allows) from other patients and controls, and analyse the blood concentrations of the relevant steroids in patients and controls, to find out if the genetic and biochemical abnormalities described in the case study really do seem to cause some cases of ME. If they do, then these abnormalities could be a diagnostic test that would identify a subset of patients who might respond to treatments suggested by the aetiology. Parts of the study already have funding and I am looking into possible funding opportunities for the rest.

For PPI:

• Looking for 2 PPI participants.
• Engagement would be an initial video call of up to one hour, which would be in the mid-late afternoon, then probably two one-hour video calls per year. There may also be occasional contact by email, and it is likely that some paperwork would be sent for review ahead of the online meetings. The precise level and methods of engagement could be agreed at the first meeting then adjusted as we go, depending on the health/ability of the participants.
• Panel members will be reimbursed for their time, both for the video calls and for reviewing the paperwork, in line with UK PPI standards.

If you are interested then please DM me through this forum or email chris.ponting@ed.ac.uk, and I am obviously happy to answer any questions about the project or the PPI.

Julia

 

So pleased to hear you're doing this research, Julia.

Common steroid meds cause severe ME in me, and I've often wondered about other people—especially if the link is less obvious because they take them more frequently than I did. Although the case you published is very specific, it's good to have people working on it in case there's something hiding here that might affect others.

I'd be useless at PPI, unfortunately, but I hope you find a couple of people with working brains!

 

Thanks Kitty, that's really good of you to say. Firstly: I'm sorry you have that experience, but also: that's really interesting! Might you be willing (and able) to tell me more? It's probably not the same thing I'm investigating but it could be relevant to the study. Obviously only if you are happy to share that information though. I can DM you my email address if appropriate, I just didn't want to put it on a public forum for now.

 

Hi Nellie, certainly if someone would like to participate but is unable to manage a call then we could see how to work it in writing. It would be good to make sure that severely affected voices are heard. Also, if there are people who would like to join a call, and could manage something but not the full hour, then we could look at options like keeping the calls shorter, speaking more softly and slowly, or whatever else might enable them to take part in a way that is manageable.

 

Thread here
https://www.s4me.info/threads/long-...ere-fatigue-2023-oakley-et.35423/#post-495716

And welcome Julia

 

Thanks!

 

A reminder of these two opportunities which, I understand, are still looking for PPI representatives.

 

Thanks to everyone - we now have both of the participants for the Edinburgh neurosteroids/genetics PhD study.

 

I thought this was one of the more interesting studies in the last years. I would have applied as PPI representative had I seen this earlier.

 

Hi Hoopoe - thanks! I've asked Chris and we can make it three participants if you'd still like to join us?

 

Sure.

 

Hi everyone, I would like to post the below request for PPI for a project proposal.

Project Description: This project aims to investigate the activation and regulation of platelets as key mediators of inflammation in ME/CFS. The project is based at La Trobe University in Melbourne Australia and is not yet funded.

PPI Members and Engagement Level: I am hoping to recruit 2-3 people with lived experience to join us on this project. Initially it would be great to meet via zoom for about 30-60 minutes to discuss the project in more detail. We will be writing a proposal for funding so in addition to the initial zoom discussion there would be some engagement via email. As this study is not yet funded we would not be able to reimburse participants for their time but we can incorporate this into the budget to ensure future engagement if funded. My email address is S.Annesley@latrobe.edu.au

 

Hi @Sarah Annesley ,

I am not a patient but am interested to know more about what you are proposing. I suspect members here generally would be interested. As far as I am aware inflammation is not a feature of ME/CFS, or at least nobody has found any. But you may be interested in specific pathways that might explain symptoms other ways?

 

Hi @Jonathan Edwards, thanks for your interest in the project and in a public forum such as this it is hard to fully answer your query! Without giving away the whole idea for the proposed project we want to investigate metabolism in platelets, how this is regulated and how altered metabolism can influence platelet function including release of pro-inflammatory molecules.

 

OK @Sarah Annesley , but I doubt anyone will pinch the idea. Why not give away the idea. The patients are keen for researchers to share ideas so that loads of people replicate each finding. And I can assure you from personal experience that if you have a really original creative idea nobody will be interested in pinching it!! They will all be following the sheep.

My concern is that we have no evidence of pro-inflammatory molecules being involved in ME/CFS and certainly no inflammation. The main molecule that has turned up is TGFbeta and that is supposed to be anti-inflammatory, although that is simplistic since it is probably involved in ankylosing spondylitis. It is certainly possible that molecules like TNF and complement components (which are both inflammatory and anti-inflammatory of course) are involved but not in well understood inflammatory roles.

 

Sorry this isn’t very detailed but saw this on bluesky and thought worth sharing.

https://bsky.app/profile/danielmissailidis.bsky.social/post/3l75vt5uhg62h

Should I share in the Australia thread too/instead?