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L Ward
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L Ward
@Lwardo4
How you treat people reveals who you are. Words are easy—actions show truth & character *4years*LC#POTS#Hashi DYSAUTONOMIA Mizzou🐅WxWatcher
Somewhere in Kansas Katılım Mart 2013
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@jasrichards2 @Naomi_D_Harvey I have felt similar with severe LC POTS, Dr. Richards
Also, we’ve learned recently LC POTS is not the same as regular POTS
There are no absolutes in science. Knowledge is provisional, offering the best current approximation of reality that can be updated with new evidence
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@Naomi_D_Harvey @Lwardo4 I get what you’re saying and understand the definition but there are autoimmune conditions like Rheumatoid Arthritis and Lupus in which Chronic Fatigue is a symptom and we experience what I would describe as a PEM like response to exertion. Is there a term that should be used
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This is incorrect
While a hallmark of ME,
PEM is not exclusive to ME
In medical circles, the conversation around PEM has expanded significantly —especially as we’ve seen it crop up in other chronic conditions, e.g. Lyme disease, Fibromyalgia, Gulf war illness, EDS, POTS and LC
Todd Davenport@sunsopeningband
People miss two important things when it comes to ME, which confuses the picture of Long Covid and other conditions: 1. PEM is best known and characterized as part of ME. It is incorrect to say PEM is inherently part of other diseases. 2. People can and do have multiple things.
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🫂💙
Stefan Arce@stefan_arce
I’m exhausted beyond words. No doctor wants to take my case. Specialists block me. Psychologists say it’s “too complex” and walk away. Institutions don’t help. My family is burned out. I’m in constant pain, crying day and night. I can’t even consistently receive my daily nutrition because of my symptoms. I’m not asking for miracles — just basic care, understanding, and some relief. Is there anyone in this world who understands severe conditions like this and is willing to help? I need: •A neurologist who won’t give up •Any institution that can support with medical supplies •Guidance my exhausted parents can follow •Any group, organization, or person willing to help safely Please. If you know anything or anyone, reach out. #advocacy #mecfs
ART
L Ward retweetledi
To the guy who held the door for me and then followed me a few steps before stopping on the sidewalk and calling out "I'm not trying to be weird, I just, uh, think I'm parked next to you. You go ahead!" and then waited for me to drive off.
Sir, may you only encounter green lights. May pizza never burn the roof of your mouth. May you awaken every day with a restored spirit. Absolute king behavior 🙌🏻
To every man wondering if it's weird to say something like this, please make it weirder and safer every time. We thank you.
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L Ward retweetledi
Spring is in the air!
Soon, many species of birds will be making their way back to the area. One species that's hard to miss among the muted browns of late-winter dead grass or the brilliant white of spring snow is the mountain bluebird (Sialia currucoides). In Yellowstone, the first mountain bluebird is usually spotted in mid-March. Anyone spotted one this year?
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@Squashedhedgi @LongCFoundation @_VFK_DAA Then I guess pwLC should call it something else entirely.
Because if we don’t have the “devastating form” of PEM like you say, then we certainly don’t have ME.
Thank you for clarifying
LC is not ME.
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@LongCFoundation @_VFK_DAA @Lwardo4 And PEM isn’t a symptom but a feature. And it is the defining feature of m.e , that pre covid occured nowhere else in the devastating form that pwME experience it.
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@sunsopeningband @j_b_kennedy I don’t think any of us are saying PEM is a hallmark of LC (?) Most are aware it is a hallmark of ME
As many of us with LC have experienced, PEM is common in LC, but seems to be a certain subtype
My subtype incudes autonomic dysfunction, as proven with a tilt table test
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@j_b_kennedy Glad things are getting better, friend.
No, PEM can be a part of Long Covid but it is not how it's defined. To say PEM is a "hallmark" (necessary for the diagnosis) of Long Covid, which I've seen on here, would be incorrect, is all I'm saying.
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I had long covid (it’s improved greatly over time thankfully)
One of my main symptoms early on was PEM
I don’t understand the point you’re making.
Are you saying PEM isn’t part of LC? Coz my lived experience says it is.
Todd Davenport@sunsopeningband
People miss two important things when it comes to ME, which confuses the picture of Long Covid and other conditions: 1. PEM is best known and characterized as part of ME. It is incorrect to say PEM is inherently part of other diseases. 2. People can and do have multiple things.
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@CovidCastaways @j_b_kennedy @Naomi_D_Harvey Giving them both the same label doesn't help if the causes are different
Just not sure we can make a statement that says if you have LC + POTS + PEM, you automatically have ME
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@CovidCastaways @j_b_kennedy @Naomi_D_Harvey I think this is one part of the issue. Meeting the description of a syndrome is not the same as having the cause of a disease.
Analogy: If two people have a cough, they both meet the "Coughing Syndrome" criteria. But one has asthma and the other has pneumonia...
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Experts 😂 What experts??
I had PEM as part of Long Covid. If you’re telling me that I didn’t then I’ll simply say you’re wrong. I know what I felt.
I’ll trust my lived experience over ‘experts’
Naomi Harvey “PhD Witch” #WearAMask@Naomi_D_Harvey
I’m trying not to get angry at the people who are arguing this with experts. It’s not their fault really, because the literature around this is a mess. But please, if you don’t fully understand a topic, just listen to the experts. PEM is unique to ME/CFS.
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@HalfThePerson @Naomi_D_Harvey @jewstein3000 This is what I was trying to convey
A symptom is a physiological response.
A "crash" is a biological event that MAY have multiple "entry points
Like
Entry Point A: Mitochondrial failure (Classic ME)
Entry Point B: Severe Orthostatic failure and Hypoperfusion (Severe POTS)
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@Naomi_D_Harvey @jewstein3000 @Lwardo4 The issue is partially there bc ME research has appropriated some of the phenomena caused by ME comorbidities:
- Unrefreshing sleep due to autonomic hypervigilance
- Brain fog due to brain hypoperfusion
- Exercise intolerance due to low preload
All OI dysautonomia/POTS
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@sunsopeningband Multisystem Crash.
I seem to have the classic metabolic "energy failure" (leaden limbs, flu-like feeling) happening alongside a clear neurological/autonomic crisis (slurred speech, head pressure, and "zaps")
Still trying to understand the complexity
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@sunsopeningband I understand this part
And perhaps I misuse the term PEM, genuine apologies to you.
TBH, I seem to have PEM+
During a crash, I am experiencing a multitude of symptoms:
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But the literature would disagree that I'm incorrect.
When we say "hallmark," we mean "necessary."
PEM is *necessary* for the diagnosis for ME/CFS.
PEM is not a hallmark of any other disease process, meaning it is a neither necessary nor sufficient condition for the diagnosis.
L Ward@Lwardo4
This is incorrect While a hallmark of ME, PEM is not exclusive to ME In medical circles, the conversation around PEM has expanded significantly —especially as we’ve seen it crop up in other chronic conditions, e.g. Lyme disease, Fibromyalgia, Gulf war illness, EDS, POTS and LC
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"Autoantibodies implicated as drivers of long COVID in new study"
"What is really striking," say both co-leads of the study, "is that three independent research groups have recently reported similar findings..."
medicalxpress.com/news/2026-03-a…
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@NimesAnnie @MrMatthewTodd @CovidSolidarit1 I made a broad statement
In theory ofc I agree with you & Cat (I’m not a science denier)
I just made a generalized comment of what I’m personally seeing in my circle
No concern of Covid at all, new health issues are not Cov related
It all relates back to the original tweet
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@Lwardo4 @MrMatthewTodd @CovidSolidarit1 I disagree that it never will. People can feel fine after 1, 2, 3... infections, and then suddenly become disabled after the next one. Or they have a sudden heart attack or stroke. (But I agree they'll go on as if covid didn't exist until it hits their health visibly.)
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Talking to a friend of mine today. He works in nightclubs.
He said nightlife is dead and has been since the pandemic.
I asked him if he thought it was because people are scared of catching Covid over and over because it damages your immune system.
He said no. Nothing to do with that.
He said I’m the only person he’s heard mentioned Covid in the last two years. And he’s someone who was hospitalised last year for a minor virus which damaged his body and almost killed him.
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@CovidSolidarit1 @MrMatthewTodd Cat,
I think, most of the time, things don’t register until they are actually experienced
I believe we all have a different lens we are viewing life
Whether it’s war, natural disaster or disability
Sometimes it takes the actual 💔 to know “it can happen to me”
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L Ward retweetledi
Nebraska is currently on fire - the biggest wildfire in its recorded history.
Not much media coverage.
This is a result of climate change.
New York Post@nypost
One dead as largest wildfire in Nebraska history blazes over 640K acres across state trib.al/31JuHTC
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