#MEAction Network
@MEActNet
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A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing
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Pinned Tweet
#MEAction
is sending an urgent letter to NIH Director Dr. Monica Bertagnolli, urging the NIH to fund the ME/CFS Research Roadmap.
If you are in the US, sign onto the letter here:
All other countries, sign here:
#FundMERoadmap
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Update: Jen has been found and is safe. Thank you for spreading the word, and acting so quickly. We are so relieved with this news and now we ask for privacy for Jen and Omar. Thank you for your love and for your swift response. ❤️❤️❤️
#findjen
#MissingPerson
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We are putting the finishing touches on our
#MillionsMissing
art installation & press conference! Join us in person at the Washington Monument or online at 2 pm ET & throughout the day. Your pillowcases are the perfect final touch. Thank you!
#pwME
#pwLC
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MEDIA ALERT: People with
#MECFS
and
#LongCovid
are protesting in front of the White House TOMORROW to demand President
#Biden
declare Long COVID & ME/CFS a national emergency.
Watch LIVE here at 12 p.m. ET.
#MillionsMissing
,
#NationalEmergency
,
#press
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We have an emergency in our community. Our founder, Jennifer Brea, has been missing for over 48 hours and was last seen in Miami, Florida. We are concerned for Jen’s well-being as she is in the midst of a mental health crisis. We are asking for your help to spread the word.
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Video from the protest today! Protesters with
#LongCovid
&
#MECFS
lay down on the
#WhiteHouse
sidewalk today risking arrest to tell
@POTUS
that millions are being disabled from post-viral disease, including Long COVID & ME/CFS. Join our post-protest chat at 7 pm ET here!
#press
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It is with deep sadness that we share with you that we lost one of our heroes and champions of ME yesterday. Beth Mazur passed away after battling ME for 15 years. She was a selfless beacon of hope & light in our community. She demonstrated an unwavering commitment to the cause.
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16M Americans have Long COVID—as of last year—& half of them meet the diagnostic criteria for ME/CFS. This has tripled or even quadrupled the number of people living with ME/CFS in the US to apx 9M. Every number has a name & every name is at the core of a story of profound loss.
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TODAY IS THE DAY WE PROTEST! We are gathering at the White House & online from our beds to demand bold, urgent governmental action for the millions of people living with
#MECFS
#MyalgicEncephalomyelitis
,
#LongCOVID
, & other infection-associated, complex- chronic diseases.
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Civil Disobedience has begun the next stage- lying down and blocking the sidewalk. Right now honestly our
#pwME
&
#LongCovid
probably are slightly relieved to lie down but we know the heat is rough! Send your love & SHARE the livestream.
#NationalEmergency
#CovidIsNotOver
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"Alarmingly, more and more patients are also meeting the criteria for myalgic encephalomyelitis (ME), which in its severe form has been compared to 'late-stage AIDS, multiple sclerosis and kidney failure.'"
New article by
@SheanaOchoa
featuring
@r_prior
.
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We are at the Washington Monument for a powerful
#MillionsMissing
art installation & press conference. We unite to honor one another, uplift our community & show the world that while we might individually be stuck in our darkened rooms, we can come together to demand to be seen.
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The
#LongCovid
&
#MECFS
community will protest at the White House TODAY at 12 pm ET to tell
@POTUS
that
#CovidIsNotOver
& to call on him to declare a
#NationalEmergency
. Activists are planning acts of civil disobedience to send a message. Livestreamed here.
#MillionsMissing
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Starting the
#CivilDisobedience
portion of the protest. Our community are putting their bodies on the line.
#LongCovid
#MECFS
#MyalgicEncephalomyelitis
#NationalEmergency
#CovidIsNotOver
#StillSickStillFighting
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MEDIA ALERT:
#LongCovid
&
#MECFS
community is planning civil disobedience protest at White House, Sept. 19th.
We are putting our bodies on the line to demand the Biden administration act with urgency to address our national emergency of Long COVID.
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"If I could speak to every newly diagnosed person, the first thing that I would say to them is that this is not your fault. This is a life-crushing disease, but you did not cause it."
@minadjenkins
shares in
@UpToDate
Patient Perspectives.
#pwME
#LongCovid
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FYI!
Our press team responded to the deeply flawed and biased New York Magazine Intelligencer article with an in-depth email to both the journalist and editors to explain the misinformation and fallacies in Wise’s article.
#PwME
#MECFS
#LongCovid
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We have been sharing some photos/videos of
#MEAction
staff heading to the protest or working from our beds this weekend but this is the other side that is often not seen. Many of us are people with ME and we are balancing work and rest & sometimes not getting it right at all.
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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.*
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We have amazing news to share!
#MEAction
and Mayo Clinic applied for a grant together from
@ImproveDX
Society to Improve Diagnosis in Medicine to transform the diagnostic and treatment process at Mayo Clinic Rochester for people with ME/CFS!
#PwME
#MECFS
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Content note: We are sharing some very sad news and encourage you to take a moment to evaluate if it is safe for you to receive this news now. Please put your health first. If now is not a safe time for you, please pass on reading the content below for now.
Thread below.
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Police are on their way! Protestors have abandoned wheelchairs and walking and are lying in the sidewalk in front of the White House! Watch & share the livestream.
Learn why:
#LongCovid
#MECFS
#StillFightingStillSick
#CovidIsNotOver
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Don't let the headline fool you.
The *research* on post-exertional malaise is very clear that exercise is not recommended, and can cause damage. The majority of the
#longcovid
community have PEM.
So, why is the NIH doing an exercise trial?
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#MillionsMissing
-May 12th, 2023 was an emotional day for those attending the art installation in person or at home. Hundreds of passersby, many who had no idea what ME was, were stunned with the image of 300 beds beside the Washington Monument & most importantly, the pillowcases.
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Today we honor and recognize
#SevereMEDay
. Severe ME Day is a day of remembrance when we think of those we have lost to myalgic encephalomyelitis (ME) and focus on those living with severe ME. For all those who have severe ME, we love you and we are fighting with you.
#pwME
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On behalf of her family, friends, & all of us at
#MEAction
, we pay tribute to the kindest soul, who deserved better than to suffer from this terrible disease. We will be honoring Beth’s life in the new year and we will let you all know what the plans are once they are finalized.
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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."
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#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.
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Protestors are in the street in an act of civil disobedience to let
@potus
know that
#CovidIsNotOver
&
#pwME
#MECFS
&
#LongCovid
are
#StillStickStillFighting
! Declare a
#NationalEmergency
!
Press Release:
Press inquiries: press
@meaction
.net
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#MEAction
's response to NY Magazine’s egregious article on ME and Long COVID is now on our site. Feel free to share! Editor Justin Miller has acknowledged receiving the email, but has offered no further response.
#pwME
#LongCovid
#MECFS
#MyalgicE
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Once again our community has shown its greatness by its compassion. Last night. we called on you to help us spread the word to find our dear co-founder Jen Brea and once again you showed up. The social media messages spread far & wide to just the person who needed to see it.
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We have protestors gathered in DC to prepare the signs for tomorrow! Thank you! We reserved a big room so everyone can spread out as much as possible but did gather for a quick pic (masked!). You might spot some community members you recognize!
@brianvastag
@r_prior
@WildNycgirl
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Dr. Anthony Fauci says that
#PostCOVID19
syndrome “is highly suggestive of”
#MyalgicEncephalomyelitis
when responding to a question by Terri Wilder who is the
#MEAction
New York leader, journalist for TheBodyPro website, & long-time ME & HIV activist.
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I have never been so busy responding to journalists who are writing about ME! Almost daily, there are new articles in major outlets talking about
#LongCovid
and
#MECFS
.
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Content warning: discussion of suicide
.
.
Time Magazine wrote about the rise of suicidal ideation in the Long COVID community. The reporter pointed to the high suicide rates in the ME/CFS community, as well.
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Today
#MEAction
protesters in
#MillionsMissing
t-shirts interrupted Dr. Francis Collins’ remarks to House Appropriations LHHS Subcommittee to demand
#NIH
take urgent, comprehensive action to stem the crisis of ME/CFS that has been growing unchecked for more than 3 decades.
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We have dedicated a cot at today's
#MillionsMissing
in honor of all we have lost because we truly carry them in our hearts in every action we take.
We used words from a song called "Baby Breathe" by Kara Jane Spencer, who passed away early this year.
@KaraJaneSings
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#MillionsMissing
2023 will be held at the Washington Monument on the National Mall in Washington, DC on May 12th that will feature an art installation and press conference supported and amplified with activism from home actions.
#pwME
#LongCovid
#MECFS
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Protesters are demanding that Biden declare Long COVID & ME/CFS a national emergency. The pandemic is far from over.
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#MillionsMissing
Protest is tomorrow- in front of the White House & online! We are experiencing a global public health crisis of chronic disease & the government is still deprioritizing us. We need a bold, urgent governmental response.
#LongCovid
#MECFS
#StillSickStillFighting
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Please read our full statement here:
We welcome you to share what Beth meant to you below. We request that questions are not asked. Thank you for the loving spirit we know you will approach this space with and please take care of your health right now.
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Please share the article & sign the petition for Millie who has very severe ME and is worsening in hospital in the UK.
Article by
@iEllieFry
:
Petition:
#BringMillieHome
#DontLetMEdie
#SevereME
#pwME
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Thank you to all who showed up in person or online for the protest today! Thank you for those who knew they could not participate safely & chose rest. Thinking of all who are too sick & unable to even know protests were taking place. Please rest & then join in again when you can.
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Breaking news!
#MEAction
has just been awarded a 3-year grant by the Long COVID Program of the Minnesota Department of Health to address the impacts of Long COVID, ME/CFS, & related conditions, across the state & to serve disproportionately impacted communities. More to come!
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Many with
#longCOVID
are experiencing extreme fatigue & distressing symptoms. Studies are showing that 10-12% will meet ME diagnostic criteria. That's why
#MEAction
has launched the
#StopRestPace
campaign. Join us at
#pwME
#LongHaulers
#MyalgicE
#COVID19
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Update: Jen has been found and is safe. Thank you for spreading the word, and acting so quickly. We are so relieved with this news and now we ask for privacy for Jen and Omar. Thank you for your love and for your swift response.
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#MEAction
is thrilled to announce this news. We are on a break...but we just had to share. The ME Senate Resolution passed! Congress formally acknowledge the ME crisis and the need for more action! Read more:
#MyalgicE
#activism
#MillionsMissing
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#MillionsMissing
2022 is Sept 19th at the White House* or from your home! We demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, & other infection-associated, complex- chronic diseases.
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Today, Dr. Bertagnolli
@NIHDirector
stated: "... I want to say about Long COVID and ME/CFS: we are so grateful for our partnership with the people that are affected by this. They have taught us over the last two years what we needed to do, now we just need to deliver for them."
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It is critically important for people with ME not to push past their symptoms and overexert themselves until they crash. Pushing through their symptoms can cause permanent damage. We know the harm that has been done to the ME community. Let us use our voices to protect others.
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#MillionsMissing
2019 has begun! A powerful week of storytelling online has set us up to take our message into cities worldwide. We will show the world what
#MyalgicEncephalomyelitis
(ME) really is & what it does to our lives-what it could do to your life.
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We are forced to question the scientific integrity of
@thesundaytimes
for publishing a Comment piece that essentially frames
#longCovid
as "a kind of mass hysteria" where patients have a "subconscious desire to be sick."
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The
@NIH
#RECOVER
program must publicly address the safety & efficacy of their clinical trial of exercise therapy to treat
#LongCOVID
. Exercise causes a worsening of symptoms & function in those with
#PEM
, which is experienced by a majority of
#pwLC
.
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We all love Jen and are banding together to show her the dedication she has always given to us. We are doing our best to respect Jen’s privacy while also making sure she is safe. Multiple close friends of Jen have reason to be concerned. Let’s send Jen all our best thoughts.
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We are ecstatic to share that at long last, Karina Hansen is now free from state guardianship!
Please follow the link for more information!
#Justice4KarinaHansen
#MEAction
#pwME
#Unrest
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This
#MillionsMissing
, we are fighting for a warp speed response to
#LongCovid
&
#MECFS
, for a massive clinical response, for patients to lead in determining how to prioritize research, and for societal & economic support. We are FIGHTING FOR OUR LIVES.
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We’ve got some very exciting news this week!
Clinicians working at the Long COVID clinic at Mayo Clinic’s campus in Rochester, Minnesota met with
#MEAction
to discuss treatment, research & improved community engagement for people with ME!
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#pwME
deserve accurate & clear
#MECFS
education from
#CDC
, not recycling of discredited recommendations for CBT & GET. The invited speaker at CDC’s Stakeholder Engagement & Communication (SEC) Call presented this slide on ME/CFS management. Failing the
#MillionsMissing
yet again!
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Announcing
#MEAction
's new, practical guide to pacing that you can use & share with your clinical provider. From PEM & how it differs from fatigue to hands-on guidance for pacing in everyday life, we added everything we wish we'd known.
#pwME
#LongCovid
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Ed Yong nails
#LongCovid
reporting once again.
Yong wrote an incredibly important article about how our country's handful of
#MECFS
specialists are nearing retirement even as millions more develop the disease following COVID-19.
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Amazing news!
@CMonaghanSNP
has secured a Westminster Hall debate Thurs 21st June, 1:30-4:30 pm, on the treatment and research of ME
@MEActNetUK
@meactionscot
A major step forward in Parliament's engagement with the ME health crisis
#mecfs
#pwme
#MyalgicE
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NHS hospitals must do better!
#SevereME
patient, 23 year old Carla, is deteriorating rapidly in hospital. Doctors have cancelled vital referrals, ignored experts’ instructions & caused MORE pain.
See
@TheChronicColab
for live protest info.
#SaveCarlasLife
#ExposeMEnow
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#MillionsMissing
is Monday! For those taking action from home, our Activism From Home Toolkit is filled w/ actions to take depending on your energy levels using the spoon theory. You can choose to do 1 action or you can do them all! See all actions below!
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We completely agree with
@zalaly
- medical professionals needs to educate themselves about ME/CFS and Long Covid and they need to listen to the patient.
Watch the full Washington Post Live panel here:
#LongCovid
#MECFS
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ME/CFS is a highly debilitating neurological disease affecting systems throughout the body. 25% of people with ME are housebound or bedbound, and only ~13% are able to work full-time. People with severe ME are often forced to exist in their beds in isolation for years.
#SevereME
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#MillionsMissing
The time to protest is now!
Save the date for SEPTEMBER 20, 2022 where we will meet for one in-person event in Washington DC to protest for the care, treatment, & support people with ME, Long COVID, & other complex- chronic illnesses deserve!
#pwME
#LongCovid
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We are thrilled to share with you that Jaime Seltzer,
@meacnet
’s Scientific Director, has been selected for
#TIME100HEALTH
,
@TIME
’s list of 100 individuals who most influenced global health this year! This is a huge honor based on years of work fighting for equity for
#pwME
.
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The family of Beth Mazur will be holding a memorial service for Beth on January 13, 2024 in San Francisco with remote attendance options.
Beth touched many lives, and everyone who wants to attend is welcome. Details will be posted once finalized.
#BethMazur
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People with ME have long talked about getting a virus and never recovering.
"I have sympathy for people with chronic fatigue syndrome now, and I believe this disease fast-tracks you into experiencing these symptoms," said a doctor in infectious disease.
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Help
#MEAction
reach people experiencing post-exertional malaise (PEM) with our new
#StopRestPace
video. We have also created new social media resources to help you share this video far & wide and we have added more resources to the page. Find it all at
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We are EXCITED to share the amazing speakers for
#MillionsMissing
on May 12th!
Keynote speakers:
-
@RebeccaCokley
Program Officer, U.S. Disability Rights at
@FordFoundation
-
@edyong209
Science writer
@TheAtlantic
-
@owasow
Professor/ Activist
RSVP:
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Protesters are planning acts of CIVIL DISOBEDIENCE in the tradition of AIDS and disability rights activists to demand recognition, rights and urgent ACTION.
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Exciting news! We have a new pacing guide to add to our arsenal! In partnership with
@patientled
Research Collaborative,
#MEAction
has published our new Clinician’s Pacing Guide! This updated version has cited resources for clinicians.
#pwME
#LongCovid
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The pandemic has exposed to the wider public what our communities have known for decades - that government, healthcare, and society at large have systematically deprioritized or erased people with disabling, complex, chronic diseases.
#MillionsMissing
#MyalgicEncephalomyelitis
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"The
#MillionsMissing
campaign is all the more remarkable when you consider that the people most central to raising the condition into...prominence struggle with symptoms that can make even the most mundane of tasks challenging or impossible."
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Today is
#LongCovidAwarenessDay
. We join in solidarity with all who are participating in awareness, advocacy, & activist efforts today and year-round. We honor those who are sacrificing to share their story. Please take care of yourselves today.
#StopRestPace
as needed.
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Psychology Today wrote about the
#MillionsMissing
demonstration of 300 cots representing those missing from
#MECFS
&
#LongCovid
.
“Every one of those numbers has a name, and every name is at the core of a story of profound loss,” said Jaime Seltzer.
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We can’t believe it has already been a week since we were in the sun at the Washington Monument, surrounded by 300 beds with pillows that told the stories of this powerful community; where our amazing speakers shared their moving stories at the press conference.
#MillionsMissing
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#MEAction
is excited to announce that
@MEencyclopedia
(
#MEpedia
) has gotten a complete overhaul courtesy of a generous grant! We've updated our software, staging, graphics, and design-- which got an accessibility audit, too! Visit the new MEpedia here!
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4 major theories being investigated for
#LongCovid
:
- Maybe the virus never left
- Once on, the immune system fails to turn off
- The immune system starts attacking itself
- Other problem viruses wake up
Sound familiar?
#MECFS
researchers are quoted.
?
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.
@MayoClinic
website has removed harmful recommendations of GET & CBT for
#MyalgicE
, a win for
#pwME
and their families. Guidance is still problematic, but change could help many seeking
#MECFS
care
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#MEAction
is hosting a press conference on March 25th to educate the media about how myalgic encephalomyelitis fits into the
#LongCovid
picture. Post-viral diseases are not new, a body of research exists, & the need to invest in researching ME/CFS is critical & urgent.
#pwME
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One last look at the
#MillionsMissing
art installation with our executive director
@LaurieMichelleJ
before our press conference begins at 2 pm ET on Twitter, Facebook, and YouTube.
She shares some of the many moving pillowcases. We are photographing them all!
#pwME
#pwLC
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A few more highlights from what
#MEAction
's Jaime Seltzer shared to today at NIH
#RECOVERTLC
.
"The severe presentation is very important to study."
"We need inclusion of more diverse populations & we need to make an explicit effort in that direction, not just hope it happens."
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"‘we believe in a life before death’...I think that would be a good motto for ME.”
#millionsmissing
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Maeve Boothby O'Neill's inquest began today. It is heartbreaking and infuriating what Maeve and her family dealt with and what people with
#MyalgicEncephalomyelitis
and
#SevereME
are dealing with in the UK.
Sending all our love to Maeve's family during this time & always.
"She didn't want to die. She had hopes and dreams and wanted to live."
Channel 4 News spoke to Sarah Boothby and Sean O'Neill, the parents to Maeve, who died in 2021 at the age of 27 after suffering with ME since her early teens.
Maeve's inquest began today in Exeter.
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752
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Photos from our protestors! We know how much of a sacrifice this is! Please help them get their message out! We have home actions for you!
#MillionsMissing
#LongCovid
#MECFS
#NationalEmergency
#CovidIsNotOver
#StillSickStillFighting
#pwME
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Advocacy win! The Census Bureau just announced that they will not change the disability questions in the 2025 American Community Survey (ACS).
Thanks to Bonnielin Swenor, PhD, MPH; Jean P. Hall, PhD: Scott D. Landes, PhD for passing along this good news.
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PEM* has entered the chat...aka your life.
It's me. Hi. I'm the problem. It's ME.
*Post-exertional malaise
AKA Post-exertional symptom exacerbation
Cardinal symptom of myalgic encephalomyelitis M.E.
Be gentle with yourself &
#StopRestPace
if you are dealing with PEM.
#pwME
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Packing up our signs & ready to protest at 12 pm ET at the White House! Watch live here on Twitter!
@potus
, intervene for the millions affected by these disabling diseases.
#MillionsMissing
#CovidIsNotOver
#LongCovid
#MECFS
Email Biden here.
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