Bon jour, In May I flew to Montreal for the ME Conference but came thisclose to loosing consciousness on the descent and couldn't sit up without pre-syncope so big beefy paramedics had to carry me off and then an ambulance ride to the hospital (by the way, they wouldn't take me to the hospital where the conference was - that would've been ideal, so not impressed with their service, harrumph.) So for this Montreal meeting, I thought I would skip the descent drama (that wasn't the first time paramedics had to take me off a plane) and just hop in my car and drive the 5.5 hours, easy-peasy. I had not considered that holding the steering wheel, even at 5 and 7, would wear me down. By the time I got to Montreal I was feeling very rough and was trying to figure out how I could pay someone to drive me back so I could lay in the back seat. Thanks to lots of CBD, I was able get to the meeting in the morning. This was a foundational meeting to create an application for funding to establish the national research collaborative (and a small research project), so very early stages, but crucial to embed the patient voice in the processes, and pivotal in the history of ME in Canada. Over the next few months we will engage the ME community and connect with potential research partners to create a robust domestic and international network. Getting the right people - researchers and patients - with the rights skills in the right roles is key. The government is all for including patients in research...up to a point - so there will be some to and fro to establish patient power in the process and decision-making (where appropriate) and we got a taste of that when the patients expressed concern about the 2 clinics that purport to help ME patients but take a 'central sensitization syndrome' approach. Neither of those clinics deemed the meeting important enough to attend. The last thing we need is a sniff of psychosomatic bullshit established in our foundation. So this is a point that will need to be resolved sooner than later - and it is hard to do that if the clinics don't even come to the table to talk. The previous 2 applications for ME research funding were rejected. If this upcoming application fails... As RuPaul says (I've been binge watching Drag Race): "Don't fuck it up".