Top Tweets for #pwLc
@MEAssociation I have now been told that this lot are on the psychobabble end of the spectrum, who don't want to believe there is an organic cause. What a dreadful shame for the poor #pwME and #pwLC #TeamClots.
On topic education spaces
Also recorded Peer Support Group Sunday Brunch Spaces
LongCOVID perspectives pod cast
Trivia on Spaces
Brain went dead lol please add on I know there is more
What side are you on?, What have you done to help?
Patients Helping Patients #pwLC
@seanstidston @atranscendedman @resiapretorius https://t.co/77xqQyQVxK and https://t.co/tYDRoTon6n help explain, though there are other agendas around certain folk telling people not to use aspirin in the pandemic, thereby likely causing 1000s of deaths. It will all come out eventually. Meanwhile we help sufferers #pwLC #pwME
Join our Pace to the Capitol! We can’t Race, but we can Pace.
Register today to help change policy, culture and research funding for ME and Long COVID. https://t.co/PVRCagTcbX
Our most ambitious #MIllionsMissing yet!
#pwME #PaceToTheCapitol #pwLC #MEawarenessHour
I often wonder how my life, the lives of my #LongCovid friends, the lives of #pwLC everywhere, and the health of the world writ large would be today if the people in our lives and beyond had simply believed us. If only they had believed us.
can someone PLEASE point me where I can order liquid LDA online (india or idk)? desperately need to source it asap, we don’t have the liquid form I need for miniscule titration in australia, GP’s been waiting months for me to locate lol thanks SM in advance #pwLC #pwME #longcovid
Forgot to mention this important paper about #pwlc and surgery. It is critical mast cell activation is appropriately addressed. This paper has been very helpful for my own recent surgeries in managing to avoid a flare of symptoms.
https://t.co/WJMd5b8M8m
@TakeWeightOffMD I was literally waiting to hear from them to travel to Cali for the trial and then nothing.
Silence.
Some who went to Cali ready for treatment never heard back.
They should be sued for a large sum to compensate the already reeling #pwLC for this unethical corruption.
@ManiacSpaniel I think with elite athletes…it is very hard to stop them. All the #pwlc I know who were made the critical error of not resting early and for a long duration.
ME/CFS is a diagnosis of exclusion.
We know the cause. It’s Covid. Covid cause immune dysfunction => opportunistic infections. This is all downstream.
This poor patient doesn’t have the correct diagnosis.
Conflation kills.
#longcovid #pwlc
"It's life-decimating, I feel like I've lost everything.
"it all started with back-to-back Covid and glandular fever infections. She had not been unwell with either
[Docs] were just really shocked that I still wasn't doing well and I'd had these viruses months ago."
#LongCovid
Please join us on November 15th at 4 pm ET for a special talk with Kim Moy of Caregiver Wisdom - "Being on the Same Team: Strengthening Relationships Through Chronic Illness." It is for BOTH the #caregiver & the #pwME/ #pwLC/ etc. . https://t.co/XlNxoIjtSX
#FamilyCaregiver
#pwLC #LongCovid
🤔Hey guys what do you think about my thoughts on this?
🤷Have you had experiences like mine or those shared?
There I go using too many emojis again. 😃
🤔Ever wonder why so many #LongCovid patients feel better for a few days on steroids, only to suffer a horrific, catastrophic rebound crash right after?
🛑Steroids slam the brakes on inflammation, which brings temporary relief. But LC isn't just "post-viral inflammation".
🔥It is active, chronic viral persistence deep in our tissues, marrow and traveling around and seeded through the vasculature by platelets.
Steroids suppress your cytotoxic T-cells and NK cells.
The exact immune guardrails keeping that viral reservoir contained in your gut, marrow, and blood vessels.
🤓Here’s what actually happens:
1️⃣ Steroids mask the inflammation while disarming your immune defenses.
2️⃣ The persistent viral reservoir expands unchecked in your tissues.
3️⃣ The steroid wears off, and your immune system wakes up to fight an even bigger viral load.
💣💥Boom: massive rebound flare.
Treating a chronic, active tissue-bound virus with blind immunosuppression isn't a cure, it's a trap.
It's really a double-edged sword in this case. Let's compare with another chronic viral infection.
Look at what happens when you give steroids to an untreated HIV patient:
1️⃣ It disarms the guardrails: Steroids disable T-cells and NK cells, the exact surveillance crew keeping chronic viral reservoirs and latent infections contained.
2️⃣ Pathogens take over: Suppressing immunity without an antiviral safety net unleashes explosive viral replication, opportunistic infections, and aggressive endothelial tumors (like Kaposi’s sarcoma).
3️⃣ The strict exception: Medicine only uses steroids in HIV during life-threatening organ flares (like severe PCP pneumonia or IRIS) and always paired with antivirals to hold the line on the pathogen.
The lesson from chronic virology is crystal clear: disarming the immune system while leaving an active virus unchecked isn't treatment, it's giving the pathogen free rein.
Nursing Opinion🧑⚕️🩺
This idea popped in my head when I was thinking about emergency meds for LC patients. So I thought hey I will work it through so we can all understand this concept.
So now we can easily see feeling better for a short course of steroids happens. We now understand why that happens. We also now understand it will make things worse and if they need to be used. They need to be given with other meds to support keeping the virus in check. And we need viral load tests and treatments available for doctors to understand and access.
“Imagine plugging in a dead cell phone over night. When you awake, you expect it to be at 100%. But when you wake, it’s only at 9% and you have to try and function on that 9 percent. You’re never fully charged.” https://t.co/zXNo1KHIvG #autoimmune #pwME #pwLC #chronicpain
“Physically #longcovid has ruined my life”
“I felt like I had the flu, but the symptoms never went away”
#coviddisables #sarscov2 #awareness #disabled #pwlc
These are the words of #pwLC. #LongCovid patients and caregivers telling their stories in their own voices. Testimony provided bravely, generously, and honestly. Share yours in text, audio, or video format at:
https://t.co/XWAzpNQZX1
🪡 P.S. #pwLC & allies: Follow, boost, share & support the posts you can find under these tags. Interact frequently so the algorithm hides MA less.
#MutualAidBoost #MutualAidRequest #LongCovidAid #HelpFolksLive2026 #AltUBIGoal
🐈⬛🎃🍬🍂🐈⬛🎃🍬🍂🐈⬛
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