Adriane Tillman at #MEAction writes, "Long COVID is not a new phenomenon—there are millions of Americans who got sick with a virus & never recovered before the pandemic & developed ME/CFS. The only difference is that we are seeing this happen now in real time on a massive scale.”
"Advocacy groups for those with long COVID and ME/CFS want the NIH to include research in ME/CFS as part of the agency’s $1.15 billion RECOVER initiative, and Tillman writes that “ample research [already] exists on post-viral illness.” #pwME#LongCovid#MECFS
“And yet, we continue to see amnesia and inaction from the NIH when it comes to building off the post-viral knowledge that already exists. Researchers with little experience in long COVID and no experience before COVID-19 are directing NIH-funded initiatives; this means people...
"...who have been in the field for six months are grantees over researchers with three decades’ experience.”
Those researchers who have decades of experience dealing with post-infection symptoms “need to be at the forefront of the long COVID research agenda..."
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"We have so much history—recent history as well as 100 years ago—to tell us that it would be incredibly unusual and atypical if SARS-CoV-2 were the only viral infection that did not lead to post-viral complications." #longCovid#pandemic
"...when long COVID became a big deal & a headline on the international stage, researchers at very impressive institutions with very impressive roles first became interested in post-viral disease...that’s wonderful...we all welcome them to the field, & we hope that they’ll stay."
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."
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.
"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 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
"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."
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)