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Hi Carol, interesting! That does sound like a different process from what I'm looking at with this study, but I bet there are others who have experienced something similar. Maybe we should start a separate thread about steroids and anti-inflammatories triggering ME symptoms.

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

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

Hi Shak8, This review article gives a pretty good overview: Huang Q. et al. Research progress in brain-targeted nasal drug delivery. Front Aging Neurosci. 2024 Jan 17;15:1341295. doi: 10.3389/fnagi.2023.1341295. I don't know if/how it might relate to fibro - this whole field has barely been...

Thanks Kitty, I will keep you in mind. It really is fascinating and I bet you're right about other people having the same thing but not joining the dots because it's not usually so obviously linked to the medication. And thank you for putting so much effort into writing the reply - I really do...

Hi everyone, really nice to see the paper discussed so positively here. I'm happy to answer any questions.

Thanks!

Definitely weird! I see what you mean that it's different, but actually there are some striking parallels. The patient's "unusual reaction" was that oral hydrocortisone (the same class of steroid (glucocorticoid) as used for asthma) left her unable to stay awake. As if she had taken a sedative...

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...

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...

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...