Tamara | ME/CFS Mama

#myalgicencephalomyelitis #mecfs #MyalgicE #postexertionalmalaise #PEM #PostExertionalSymptomExacerbation #pese #PostExertionalNeuroimmuneExhaustion #PENE #ChronicFatigue #PersistantFatigue #Burnout #PostViralIllness #PostViralSyndrome

We need greater awareness and for our primary care teams to screen for PEM so people can recognise these red flags BEFORE they’ve already lost half their capacity.

I had a slow, gradual slide into illness, and looking back, I’d experienced post-exertional malaise (PEM) for years before I sought medical help. But like so many others, life kept moving… there were always more pressing issues, bills to pay, and responsibilities to juggle.

But what if we could intervene earlier? If more people knew to immediately reduce activity at the first signs of unexplained, persistent fatigue… especially when rest doesn’t fix it… we might be able to prevent or at least slow the progression.

a graphic image with a variegated gradient base of purple that has glowing areas of pink, blue and a deeper purple. The words ‘Your body whispers before it screams… Reducing activity at the first sign of unexplained, persistent fatigue could help slow or prevent illness progression.’ Are in light pink.

So often, people don’t realise they’re on the path to ME/CFS until it’s too late. By the time people get diagnosed they usually have at least a 50% reduction in activity levels, which means by the time someone gains the knowledge to manage their illness, they’ve already lost so much of their life.

Alt text: Screen shot of a tweet from @tiz_xingjian on 5/31/2024. Screen shot from a video of a young Asian American woman wearing a red and black shirt, playing guitar. The text of the tweet reads: wrote a lil theme song for #JohnVsJonVsME! Absurdly proud of myself for rhyming “research is precious” with “Dr. Ron Davis.” @lastweektonight & @thedailyshow who’s going to get in on the #GreatestMEdicalScandal?

Write a love song or poem to @lastweektonight1.bsky.social
@thedailyshow.com like this one from our first round of #JohnVsJonVsME! 5/

@devdell.bsky.social
@radosh.bsky.social
@ryanmiddleton.bsky.social
@malex-aforethought.bsky.social
@nicoleconlan.bsky.social
@gilbertjasono.bsky.social
@raminhedayati.bsky.social

@johnathanappel.bsky.social
@danielobrien.bsky.social
@taylorkayphillips.bsky.social
@timcarvell.bsky.social
@anferno.bsky.social
@mariancw.bsky.social
@owenparsons.bsky.social
@mpasset.bsky.social
@mayatribbitt.bsky.social
@lgriffin.bsky.social

Justice for M.E. is long overdue!
Can we catch the attention of @thedailyshow.com and @lastweektonight1.bsky.social and finally expose the greatest medical scandal?
Tag your fellow Guardians and let us know who your favourite Sailor is🌙

#JohnVsJonVsME #TheGreatestMedicalScandal #mecfs

ALT Text: Video of Lady and the Tramp eating the same piece of spaghetti until they kiss. At the too of the image there is white text with a black outline that says ‘#JohnVsJonVsME Valentine’s edition’ The Tramp is labelled ‘The M.E Community’ and Lady is labelled ‘The Jo(h)n’s’ Under this it it says ‘the anticipation is growing. When will the Jo(h)n’s cover the #GreatestMEdicalScandal

Join us in calling on @lastweektonight1.bsky.social
@thedailyshow.com @weeklyshowpodcast.bsky.social to win our 💕 by covering #GreatestMEdicalScandal about the history of gaslighting & denial of ME/CFS by creating, liking, or resharing MEmes like this one by @mecfsmama.bsky.social 3/

Which Jo(h)n will be Kenough??
#JohnVsJonVsME #GreatestMEdicalScandal

*browse of

Here’s the TOOLKIT for the @johnvsjonvsme.bsky.social LoveFest. Have a browse out the MEme’s if you need a pick me up or some inspiration!

a MEme of personified cartoon flowers with the faces of Jon Stewart and John Oliver on them holding balloons that say “All you need is love” “& funding for biomedical research & care” on them. Above them “Invite your friends & Valentines to join!” Below “February 14th starting at: 7pm Sydney/9 am Berlin/3 am EST/12 am PST (join when you’re awake!)” and then “#Greatest MEdical Scandal #John Vs Jon Vs ME Valentine’s Edition Love Fest”

#JohnVsJonVsME is back! #ValentinesDay edition! Which late-night great John Oliver @lastweektonight.com or Jon Stewart @weeklyshowpodcast.bsky.social will be first to win our hearts & cover the #GreatestMEdicalScandal! #pwME (MEme c/o @diatoma.bsky.social )

Here’s how you can join the LoveFest🧵

a cartoon of a deer swimming in a body of water Alt: a cartoon of a baby deer finding it’s footing.

I have no idea what I’m doing here. Please be kind while I’m finding my feet. 💙🤲

I so relate to this. 🫠