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.
Sometimes exertion is misunderstood as exercise. Exertion is defined here as anything that stresses or strains the system. No trigger can be controlled all of the time. The goal of pacing is to MINIMIZE post-exertional malaise rather than eliminate it. #PEM#MECFS#LongCovid
#StopRestPace is a campaign created by #MEAction to help our community spread the word to those who were experiencing PEM after COVID-19 to rest and pace their activity.
Check out our videos and more at meaction.net/stoprestpace
Pacing is a self-management strategy for activity. Patients who pace well are active when able and rest when tired. Proper pacing involves building up awareness of the levels of daily activity that do not trigger relapse of symptoms through PEM. It is incredibly difficult.
- There are many barriers to pace properly.
- Activity management in severe patients can be very challenging since even activities like eating or brushing teeth may lead to a crash. Pacing advice may not always be useful in this population. #SevereME
#MEAction offers three Pacing & Management Guides - adult, pediatric, and clinician - on our site. Our pediatric guide was developed in conjunction with @LongCovidFam. Our clinician's guide was developed with @patientled. meaction.net/resource/pacin…
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-…
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.
Now, half of the Long COVID community meets the diagnostic criteria for ME/CFS. This more than quadrupled the number of people living with ME/CFS in the US.
#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 🔻
1. Watch/Share the Press Conference It will be livestreamed TOMORROW at 11am PT/2pm ET on our YouTube channel, Facebook, Twitter, and on our site. (should all tech work as planned!)
2. Activism From Home Toolkit and Pre-made Graphics : bit.ly/MMAFMWG
#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…
We have an Activism from Home Toolkit for everyone joining in the critical effort of making sure our #MillionsMissing stories & effort are shared far & wide. #pwME#pwLC bit.ly/MMAFH
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
#MEAction has sent several letters to RECOVER explaining our concerns about this trial, and why it's imperative that people with PEM are excluded: meaction.net/wp-content/upl…
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...
"...significant detectable metabolite differences between participants fated to develop severe ME/CFS following IM versus recovered controls. We identified glutathione metabolism, nucleotide metabolism, & the TCA cycle (among others) as potentially dysregulated pathways." #MECFS