Action CIND

@PatientWorthy Have you tried the Rare Diseases Foundation of Canada?

What advice would you give to people living with a #RareDisease that want to get started with advocacy - but don't know where to begin?

Aug 8th is #SevereMEDay. 25% of those with #MyalgicE have a severe form of the disease. Help raise awareness.

Do you write a blog? The #Blog4May12th is back! Include this hashtag in your blog and let info@may12th.org know so we can post about it. #may12th, #MyalgicE, #pwme, #Fibromialgia , #mcs

@ArasiBenjamin Thanks for tweet. Tom Hennessey Jr founded May121th. We just help promote it.

May 12 is observed as #InternationalMECFSAwarenessDay spreads awareness for a condition called myalgic encephalomyelitis/chronic fatigue syndrome. @ActionCIND in Canada found ME/CFS Awareness Day in 1993. m.facebook.com/story.php?stor…

Tell2People - a new initiative to raise awareness in May. See details at may12th.link/Tell2People-De…. Any questions email info@may12th.org. Please share widely. We want the whole world to know about us. #may12th, #Tell2People, #pwme, #FM, #mcs, #GWI, #CIND, #MyalgicE, #fibro

@Davemconte Perhaps they have accepted their illness. It makes a difference.

It’s entirely strange. The people I know with severe #MECFS are at times more overjoyed and enthusiastic about life than all of the healthy people I know. But maybe it’s not so odd, as severe #pwME seem to take very little for granted.

Help me support May12th International Awareness Day by shopping via iGive. Or, help your favorite cause! igive.com/OFZxA9 #iGiveDoYou

@Sabrina_Poirier Thanks too bad. Hope its repairable. Reminds me of cottage neighbour that built a great cottage but didn't brace it. The snow pushed the roof right in and bulged all walls out. Complete make over.

Just when you feel as overwhelmed as you think might be possible, the universe says, “Nah. Let’s see what happens if we add one more thing.” (Photo of my new shed, that my family and I built this summer. It took almost forever because I had to pace.)

Disappointing to see Professor Paul Garner, featured in today's @thetimes (£) article by @whippletom, still advocating for recovery from serious post-viral illness by thinking oneself better. My blog post from 1 year ago explains more valerieeliotsmith.com/2021/02/01/pro… via @ValeriEliotSmit

@brianlilley Very sad news indeed. She was a wonderful lady and animal lover. I kin of of expected her to go on forever. Her kind spirit seemed to keep her going. We can all learn something from her.

Sad news.

$5 New Member Shopping Bonus! Join now, when you make your first purchase by 2/15 IGive will give us an extra $5 bonus for May12th International Awareness Day. iGive.com/ip8f6VW #iGiveDoYou

If it doesn’t fit your face properly you might as well not wear it. So leave it for the front live staff that have had a proper mask fit test.

You should know there are several types of N95 masks and they don’t all work. When I was in nursing school, I had to have a mask fit test to determine the correct fit for my face.

Losing my mind. I thought I saw a tweet from someone I know asking how to get an N95 mask as he store had sold out. I went to check only to return to being unable to find the question. In case it did exist, Amazon.ca has them. HOWEVER - you should know something.

Exercise duration by itself is not an appropriate functional outcome measure for #pwme and patients with #LongCovid. If we wouldn’t stress test a diabetic with a candy bar, we shouldn’t stress #pwme and patients with #LongCovid using bike and treadmill “exercise-for-time” tasks.

@sunsopeningband Thanks for posting this Todd. You’re the experts on this.

@AlisonSbrana However,continuing to work is the worst thing you can do and will and no doubt contribute to a permanentsu disability. As hard as it is to do, giving up work, may actually give you a shot at managing recovery such that working again becomes an option down the road. Good Luck.

Yes - this is really important, especially when trying to capture numbers on Long COVID impact. If I apply my own timeline to Long COVID, I wouldn't be counted as unable to work/on disability benefits until 5 years into illness... so applied to Long COVID earliest would be 2025.

@AlisonSbrana However, continuing to work is the worst thing you can do and will and no doubt contribute to a permanentsu disability. As hard as it is to do, giving up work, may actually give you a shot at managing recovery such that working again becomes an option down the road. Good Luck.

@AlisonSbrana Having done that myself, I totally get where you are coming from and needing to do what ever you can to see what you can do not wanting to give up work.