Trump administration has terminated funding for the Center for Solutions for ME/CFS at Columbia University—one of the nation’s leading research centers for ME/CFS, led by Dr. Ian Lipkin.
#MEAction plans to fight back! All research is stopping. The Columbia ME/CFS Research Center was in the middle of undertaking these studies:
- Longitudinal study tracking symptom severity
- Studying past infections & their role in ME/CFS
- Studying genetic differences in ME/CFS patients

May is a busy month for our community! We wanted to help everyone out by gathering these important US government dates for NIH and CDC meetings -May 2, 6, 15, & 28.
#MillionsMissing week is May 3- 12 and #WorldMEDay is May 12th.
#pwME #MECFS #NIH #CDC
Thread with links ⬇️ May 2 - 9 am to 4 pm ET: NIH PI-MEC/CFS symposium. Registration required for in person but not for virtual attendees. mregs.nih.gov/channels/F1P5-…

Wondering about the terms PEM or pacing? Seen #StopRestPace & were curious as to what it referenced? Been in our community a long time & want easy ways to explain these concepts? Perhaps you have seen pacing misused & want to clear that up. We hope this thread helps! #pwME #PwLC Post-exertional malaise (PEM) is the cardinal symptom of ME/CFS. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, & sensory overload can trigger PEM.

The government's public health crisis may be officially ending, but for millions of people with ME/ Long Covid, we are #StillSickStillFighting.
#MillionsMissing 2023 is May 12th at the Washington Monument featuring an art installation & press conference. millionsmissing.org ME/CFS is a neurological disease with symptoms in all body systems that affects people of all ages and backgrounds. Most cases of ME/CFS are triggered by infection, often a viral infection. Before the pandemic, there were millions of people in the US living with ME/CFS.

#MillionsMissing 2023 is tomorrow! It will be a powerful day–where this community comes together to share their stories, demand that we receive the treatment and care we deserve, and garner the much-needed press attention. Reminders of how to prepare in this thread. We are heading to the Washington Monument in DC with an art installation and press conference! This art installation will highlight the #MillionsMissing from their lives due to ME and Long COVID and draw attention to our community’s demands.

Ways you can join in 🔻

#MEAction is hosting a demonstration at the Washington Monument on May 12th! Join us there in person or show your support from home! Together, we will make our voices heard so we can command the attention of the government and the press. Find out more at millionsmissing.org. The art installation will be at Washington Monument (northeast side) from 9 am to 3:30 pm ET.

The press conference will be held at 2 pm ET in DC & also livestreamed via our social media & on our page. (Press question, Email press@meaction.net )
meaction.net/event/millions…

Nature published an article about our communities' (#longCOVID and #MECFS) major concerns about studying exercise therapy for #LongCovid.

#MEAction had numerous conversations with the reporter to explain why treating PEM with exercise therapy is harmful.
bit.ly/3Kp5dis "In a world where there’s hundreds of things to trial, why are we choosing this one thing that we know has the potential to cause harm to a substantial portion of patients?” asks Lisa McCorkell, a co-founder of the Patient-Led Research Collaborative for long COVID. @patientled

New study out of Chicago that examined college students before, during, & 6 months after mononucleosis.
"Pre-illness data reveals differences in multiple metabolites and metabolic pathways in those who do and do not recover from infectious mononucleosis."
pubmed.ncbi.nlm.nih.gov/35640165/ "Metabolic pathways related to energy production, amino acids, nucleotides, nitrogen, lipids, and neurotransmitters in myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) may contribute to the pathophysiology of ME/CFS."
"Examining pre-illness blood samples, we found...

"Millions of people have already developed long COVID; many of them... have not recovered. This is the challenge of chronic illness: When people join its ranks, they do not always exit. With each new case of long COVID, the virus’s burden balloons." theatlantic.com/health/archive… "To date, experts have yet to find any demographic that has been spared from the condition, despite persistent myths that certain groups, particularly kids, are somehow immune...Every iteration we’ve encountered so far, Omicron included, seems capable of causing long COVID."

"Millions of people continue to suffer from exhaustion, cognitive problems & other long-lasting symptoms after a coronavirus infection."

Striking visual journalism by @joshkellerjosh for @nytimes in "How Long Covid Exhausts the Body."

Thanks for the link to our #StopRestPace!

https://twitter.com/joshkellerjosh/status/1495445978362564619

"Some long Covid patients meet the criteria for ME/CFS (also known as chronic fatigue syndrome), which often starts after a viral infection. Researchers have found that ME/CFS patients also suffer from a lack of oxygen triggered by circulatory problems." #longCovid #MECFS

Great video interview with #MEAction's Director of Scientific & Medical Outreach Jaime Seltzer @exceedhergrasp1 with Frank Diamond of @ICT_magazine.

"We expect the number of people with ME/CFS to triple or quadruple due to the pandemic alone."
#pwME
infectioncontroltoday.com/view/getting-a… Transcript is available under the video.

"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

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.”

https://twitter.com/ICT_magazine/status/1487790703715524612

"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

#MEAction launched our #StopRestPace campaign in 2020 knowing there was an urgent need to reach the people who had #LongCovid & who are showing symptoms of myalgic encephalomyelitis (ME). That need has grown increasingly urgent as the pandemic has become a mass-disabling event. In 2020, researchers were predicting 10-12% of those who caught COVID19 would develop ME/CFS. Almost 2 years into the pandemic, we now have preliminary studies showing that nearly half of Long COVID patients are meeting the diagnostic criteria for ME/CFS.* meaction.net/long-covid-me-…

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."

https://twitter.com/IamMADELINEpod/status/1460346079577141249

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."

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!

"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

"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

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)