Foundational meeting: establishing a Canadian ME Research Collaborative

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".

 

That’s good, thanks for your efforts. I hope it comes throughm we need a worldwide research effort like other illnesses rather than thinking one or two major US research teams can achieve it alone. Hopefully it will be a domino effect

 

Thank you Scott. Hope your adventure doesn’t cost you too much payback. I look forward to hearing more details on this. Which are the 2 ME centres pushing central sensitization? Still the Vancouver one?

 

Yes, and the Nova Scotia clinic. Grrr.

 

Thank you @ScottTriGuy for your valiant efforts and success in attending the meeting! The symptom crap pwME go through just to do a normal activity! Thank you for reporting on it so soon after the meeting of December 14th. I hope you have improved since this ordeal of travel etc.

We need all our governments to be innovative in funding biomedical research for ME. The old tried and true methods to fund other diseases does not work here. It is good to see the government is consulting pwME. I hope this continues.

Reap what you sow: dry up the biomedical research funding, block medical education, ridicule pwME and interested researchers and clinicians, block anything except misleading case definitions, promote falsehoods about this debilitating physical illness being psychosomatic, fund only BPS nonsense etc. And, when the bus has started to turn around, expect grant applications to flow, and researchers to flock to an area that has been pummelled into the ground for 30 years.

I hope they can do better than this very soon. It's an embarrassment that so far Canada is a non-starter where biomedical ME research is concerned. Other countries are moving ahead - Canada is still lagging behind, and the world-wide ME community sees this.

Maybe it's a good thing the two outlier clinics did not attend. However, that does leave pwME in these two provinces out in the cold since the only game in town seems to be the blame game.

At first look the "central sensitization thing" looks biomedical - until one reads that exercise will improve this. Oh, and I would assume counseling as well, but didn't read far enough to see that bit. So, again - psychosomatic. Wonder what this theory says about people with cancer, RA, Parkinson's etc. Just exercise and get counseling, and all will be well?
Essentially, this theory is saying the same thing again - ME is the pwME's fault, full stop.

Thank you very much @ScottTriGuy for your perseverance, determination, and insights! Let's hope progress is now underway.

 

Please let us know if there is any support we can give from us home bound types by tweeting or anything else.
Thanks so much for all you do @ScottTriGuy . I hope too that somewhere along the way new people are found who are able to add to the mix and carry some of the load.

ETA: fixed typo

 

@ScottTriGuy, any chance the government might do some form of alternate type meeting for pwME who are house or bed bound?

Might the officials ask for written input, or do a survey?

Ironic, to expect people who are so sick to travel to a meeting to provide input on this whole issue.