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I concur, if the audience is scientists, give them good quality science. If the audience is the general public, they may respond more to the oppressive social/power dynamics of status and money (based on their own experiences). So we may need different messages for different audiences for them...

Ouch.

I don't see any mention of dose - I'm already take Q10, but wonder if I should be taking more in light of this study. I found this section particularly interesting because I am taking the first 2 HIV meds and also taking Rapamune, a mTOR inhibitor. Tenofovir and emtricitabine promoted...

Good to know you've lived to tell the rigors tale, that provides me some comfort. I have recovered from that episode, but it took a few days - it certainly was a lot of 'exertion' in a short period. I suspect that mine may have been triggered by the crumble in a piece of apple crumble pie, or...

I'm not sure what this (ironically) says about me, but in reading the headline (Toxic Masculinity made my ME much more punishing) and excerpt in the original post, my immediate reaction to his ME disclosure was empathy (and fear of being bed ridden). However - admittedly - my immediate reaction...

I just recently discovered the term 'rigors' to explain my experience of this periodic symptom, usually set off by exposure to cold. Although it had a new disturbing twist a few days ago when I had rigors for about 5 minutes (not triggered by cold, so don't know what's up with that) and it was...

I took that to mean that the survey may trigger PTSD symptoms that are caused by traumatic experiences in their career / professional development. I think this would especially pertain to researchers that also have ME (or family member). I suspect the same information about recall potentially...

Actions speak louder than words. Repeating empty words undermines confidence and trust. Collins has little left in the ME community.

I said earlier I'd bet dollars to donuts one group has known about it and will have been preparing and will get the contract. This is just a public relations exercise.

Good news - the Health Minister invited us to meet with her in Ottawa - I will follow up today to narrow down day and time. I would say almost half the questions to the Minister were from ME patients, so we had a very good turnout. Another small step forward, with many more to go. There are...

:nailbiting::nailbiting::nailbiting:

You'd think they'd have realized that by disappearing those pages, it looked like further proof the govt is trying to invisibilize ME / patients.

They are in process of updating the pages, but kind of fumbled the ball by not putting up a note saying such. How much detail they'll go into, I'm not so sure.

Awesome questions, thanks @DokaGirl

Millions Missing Canada was just alerted that the Federal Health Minister will be in Toronto this Sunday for a town hall to take questions from the audience. We're bringing Millions Missing Canada shirts for visibility, info about ME, and some prepared questions to share so that we have...

With such an abbreviated deadline, I'd bet dollars to donuts one group has known this was coming and have been preparing. Who is most likely to be given a heads up?

Ditto.

No doubt any estimates any where are going to be sketchy for ME, although Canada also has the highest MS rates if that means any thing. Indeed, a group of us have been preparing for this funding opportunity since December when we met with the government in Montreal. We should receive the...

Hello Health Minister, Thank you for the crumb. Sincerely, 580k Canadians with ME

Not surprisingly, when I make the invitation about their ethical responsibility, they don't reply. This is the first time I've not done it on twitter, so it is not as effective in terms of developing the narrative.