I think I read before that members were wary of Don Staine's research at Griffith University. I couldn't find it here...I got the invest in ME Conference DVD, haven't watched his presentation yet. Don't want false hope...is there a reason their research isn't considered strong?
I watched his presentation and thought it was OK, but I'm not an expert. The main worry, as I understand it, about his research is that his department seem to be very keen on publicity that hypes up the significance of their small studies, claiming, for example, that they have found a biomarker from a single small study. I think this is partly so they can get funding for further studies. In the talk at the conference, if I remember it rightly, he was much more cautious about making unwarranted claims and simply described some of their research. I don't know enough about the details of the science to judge the quality of their work. To be honest I can't remember the details, but he didn't seem to be saying they had found anything groundbreaking. I think you are safe to watch it just to get the general impression that research is happening and some interesting stuff is being found, but we don't know how significant it is.
I don't even believe they have a biomarker. Most researchers in the US have remained pretty quiet although I do remember someone in the research field saying something to the effect that they don't have too much faith in what they have "found".
Posted on FB:National Centre for Neuroimmunology and Emerging Diseases - NCNED A turning point for CFS/ME Research NCNED have announced that a pivotal research publication has been accepted: ‘Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients’. This article proves a significant impairment in TRPM3 function in NK cells and that TRPM3 function is significantly compromised in CFS/ME patients. NCNED used the ‘gold standard’ of patch-clamp electrophys...iology to demonstrate this world-first discovery. NCNED used NK cells as a model for all cells in the body expressing this essential calcium ion channel. TRPM3 calcium ion channels are widely distributed in numerous body systems such as the central nervous system, metabolic and endocrine systems (particularly regulating pancreas and insulin function), cardiovascular system, gastrointestinal system, skeletomuscular system and immune system. NCNED are now pursuing additional TRPs they have previously identified in CFS/ME patients and are accelerating drug investigations for pharmaco-therapeutic applications in CFS/ME patients. We particularly wish to acknowledge the support of Stafford Fox Medical Research Foundation, Mr Douglas Stutt, the Mason Foundation, the Alison Hunter Memorial Foundation, the Blake Beckett Foundation, McCusker Charitable Foundation, Buxton Foundation, Change for ME Charity, Qld ME/CFS/FM Support Association Qld Inc. and the ACT ME/Chronic Fatigue Syndrome Society. Reference: Cabanas H, Muraki K, Eaton N, Balinas C, Staines D and Marshall-Gradisnik S: Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients, Molecular Medicine, Accepted 2018. Best wishes Sonya, Don and the NCNED team
Chatting to an established researcher at the IiME conference during a break, who I won't name as it was a private discussion, and they were very scathing about the research done by Griffiths and the claims they make. One of the things I recall about Don's presentation is that its based on two studies that we have looked at here, and the second one is based on the results from just one patient, something he didn't mention.
And as for their most recent Facebook post, as shared above, it's full of unnecessary hype on results that haven't been replicated, as far as I know, by anyone else, and that are based on, relatively, small numbers. I can only assume that they believe their press releases but I'd have a lot more respect for them if they didn't seem to be in the business of creating false hope in patients.
I remember that there was a query raised about the validity of their statistical analysis of one of their earlier TRPM3 papers. I have no idea re the detail. It is interesting that they did not attend the OMF conference last year.
Griffith and Don Staines featured in this: https://www.youtube.com/watch?v=yKoheNZlqXg Haven't watched it all myself, I stopped at some point because something annoyed me, can't remember what.
