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18 Nov, 5 tweets, 4 min read
We’ve raised over $22,000/£16,000 for our End of Year Giving Campaign! Thank you! 🧵meaction.net/eoy-2021/

Time to reveal Staff Characters!
Adriane: The Press Scribe
Ben: The Huntsman of Agencies
Erin: The Valkyrie of Programs & Campaigns
Holly: The Town Crier of Social Media
Jaime: The Wizard of Research & Medical Education
Julia: The Mystical Fairy of Fundraising
Laurie: The Manager-ing Elf
Steven: The Court Jester of Communications

We have reached our 2nd fundraising level, but we must keep driving forward #MEAction’s End of Year Giving Adventure!
The Giving Adventure is a fun way to raise funds, but it also provides us an opportunity to connect as a community--which is at the heart of everything we do at #MEAction! So join in & share a tweet and/or picture about what your fantasy character would be AND tag @MEActNet.
You will be entered to win a “You Are Not Alone” t-shirt! You can post a photo/ design/ or a description of who your fantasy character is & why! Maybe you are a knight, a goblin, a princess… the sky is the limit! Contest ends November 21st at 12pm PST.
#pwME #GivingTuesday
We are beyond grateful for your support whether it be financial or sharing on social media! It is only together, as one team, that we will finally reach the #MillionsMissing Castle! Watch for great events coming soon!
#MECFS #LongCovid #MyalgicE

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More from @MEActNet

#MEAction Network Profile picture
19 Nov
Content warning: We recommend caution when reading if you are not in a safe place to be reading about assisted dying.

@IamMADELINEpod recently had an op-ed published in @ipoliticsca. In it Madeline shares, "I am dying, and my death is completely preventable."
Madeline is a person with severe ME who is telling her story including how British Columbia will no longer cover the oral & intravenous medications keeping her alive.
Madeline ends her op-ed with an ask for the public. "Now, I’m asking for your help. I’m asking you to speak up."
"Write a letter, make a phone call, tweet something at the government in play where you live. If you, my fellow Canadian citizens, don’t insist on improvement so that people like me at least have a chance at a decent quality of life, I don’t see how this can possibly change."
Read 5 tweets
#MEAction Network Profile picture
14 Aug
"Unfortunately, current numbers & trends indicate that “long-haul Covid” is our next public health disaster in the making. To understand the landscape, we can... apply the lessons of past failures in approaching postinfection chronic disease syndromes." nejm.org/doi/full/10.10…
#MedTwitter if you want to understand the landscape & better understand the next public health disaster, we can help you.

Want to learn more about ME/CFS mentioned in the @NEJM?

We have curated info for healthcare providers here: meaction.net/learn/healthca…

#MedStudentTwitter
We know this is a rough time to be a healthcare provider with so much being asked of you. How about learning through a Sundance award winning documentary? @unrestfilm is on @netflix & medical education credits are available here: unrest.film/cme

#MedEd #MedTwitter
Read 4 tweets
#MEAction Network Profile picture
14 Aug
"To understand why long Covid represents a looming catastrophe, we need look no further than the historical antecedents: similar postinfection syndromes. Experience with conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)..." 🧵
nejm.org/doi/full/10.10…
".. fibromyalgia, post-treatment Lyme disease syndrome, chronic Epstein–Barr virus, and even the 19th-century diagnosis of neurasthenia could foreshadow the suffering of patients with long Covid in the months and years after infection." #LongCovid #MECFS #pwME
"The health care community, the media, and most people with long Covid have treated this syndrome as an unexpected new phenomenon. But given the long arc and enigmatic history of “new” postinfection syndromes, the emergence of long Covid should not be surprising."
Read 6 tweets
#MEAction Network Profile picture
26 Jun 18
One last thread on the #DysConf2018 by @rndNumGen. Hasan Abdallah of The Children's Heart Institute presented Sunday on "Stubborn POTS: Why won't my #POTS respond to treatment?" If treatment isn't effective after six months, it's important to dig deeper. (1/7)
@rndNumGen #POTS is a symptom complex rather than a disease entity in itself, with an underlying heterogenous pathophysiology. It has an unpredictable varying course, and the medical management paradigms is evolving. #DysConf2018 (2/7)
@rndNumGen To dig deeper, look at underlying pathophysiology. Look at medications that are being used--dosages, drug targets, interactions, etc. to see where you may be able to make changes. Look at comorbidities;they lead to more clinical severity and complex management. #DysConf2018 (3/7)
Read 7 tweets

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