Watching with horror as we guard FDA approved meds with an iron fist while patients decline and die of persistent infection.
Joined September 2008
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These viruses, man… they sure do persist 😢
Baby gets measles at 5 months, she “recovers,” and yet the virus lingers in silence until age 10, when it re-emerges & quickly destroys her brain.
abc.net.au/news/2026-06-07/m…
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Doctors on Reddit routinely express their surprise & dismay as their patients continue to complain incessantly about “fatigue.”
“Why is everyone so tired??”
Top comment:
“Nothing you can do about it… life is shit & then you die…”
=> get a sleep study… it’s phones… THC… diet & exercise….
…tests look fine! hey- fatigue never killed anyone! 🙄😵💫🤬
So far, there has been ONE voice of reason.
The doctors are not ok… they’re not being educated & they are 100% confused by what they are witnessing.
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Worth noting @rickygervais also thinks it’s funny to joke about MECFS 😡😡😡
Funny how I don’t remember any jokes about 9/11 first responders, @jonstewart. Just years of consistent, heartfelt education and advocacy. And yet you’ve chosen to punch down on a group of vulnerable people with miserable quality of lives who really need your help. Sad and gross.
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Another Long Hauler with neuro symptoms sharing improvement on Baricitinib.
I’ve noticed others on Reddit (also with prominent neuro symptoms) reporting significant improvement.
Will be exciting to see how the trials go. Hopefully they’ve been able to capture this specific patient group who seem to benefit.
May 6
Baricitinib is giving my life back it is the best I have been in 4 years of severe neuro shit. ❤️😪
I would be in constant brain pain and cognitive impairment and physical reduction.
Had to stop university at 21 yo.
I guarantee you guys I was severely disabled and in pain.
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This Redditor shared, “I am 70% improved. I was bedbound from mid Aug-mid October. 4 yrs and worsening.”
reddit.com/r/covidlonghauler…
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This Redditor reports, “Help to get rid of 95% of my dementia level brain fog after about a week.”
reddit.com/r/covidlonghauler…
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Thanks yet again to Dr. Iwasaki for her courageous adherence to objectivity and inquiry.
Worth noting that we have NO IDEA how prevalent these vaccine injuries are because we refuse to capture this data in patient charts or elsewhere.
Furthermore- the fact that vaccine spike can trigger an illness cascade that is strikingly similar to that which is triggered by the virus itself is an IMPORTANT PIECE OF DATA.
Moreso - some Long Haulers, whose illness clearly began with the VIRUS, find that they can no longer tolerate additional vaccines.
These are all valuable clues!!! Let’s keep following the science like @VirusesImmunity ❤️
I wrote this piece to promote thoughtful, respectful, and rational engagement with controversial science topics. I hope it fosters constructive dialogue in the scientific community—thank you for reading and sharing 🙏🏼 @NatRevImmunol
nature.com/articles/s41577-0…
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THIS! THIS! THIS!
We are ALREADY PAYING for healthcare that we cannot even access. Let’s use our money to fund care directly, pay doctors, keep rural hospitals open.
Fuck these insurance robber barons.
Walz: ‘Next Democratic president better figure out a way to get universal health care’
thehill.com/homenews/campaig…
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I love the fire and fury that drives Marc Elia.
Truly.
These feelings would, no doubt, be shared by the vast majority of humanity, if only they realized what was happening.
Apr 22
🔥🔥🔥
Marc Elia, Chairman, @Invivyd:
“There are very few companies [run by] patients themselves. [I] have some very real remaining cardiac involvement from a Covid infection in November of ’21. I was an athlete. [Now, even just] playing with my kids [there] is real compromise involved in my cardiovascular system. So I think it lowers my tolerance for hearing that everything we’re doing is good enough. I think it increases the urgency and the tone and tenor of our communications. … Occasionally, it makes me say very direct things, including to our regulator. ...
"I am sick and tired of a world in which it is expected and understood that I will be sick periodically for the rest of my life and that’s going to shorten my lifespan. I think it has very clearly already done that. … Millions of Americans have been pretty badly dinged up by this and other viruses. And we tolerate it. [But I might] die 7, 8, 25 years earlier than I might otherwise. …
"I actually think being vulnerable myself and being angry on behalf of other vulnerable people adds a little twist to our work and I hope and trust that when people come to hear from Invivyd, [they] can know that we don’t try to put the patient first, we are the patient we are putting first! [We want to] keep vulnerable people well. Because that is indeed who I am and who many of us at the company are.”
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Apr 21
WATCH LIVE: @Invivyd's Marc Elia sits down with @POLITICO's Katie Wojcik to discuss the evolving pace of health care innovation – especially relating to preparedness and access.
Tune in now ⬇️ #POLITICOHealth x.com/i/broadcasts/1NxaraeOP…
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I’m rooting for @DuaneStorey big time.
Every time I see another LC or MECFS patient make the final, irreversible choice, I wonder if they’ve tried everything possible.
It’s heartbreaking to know that a lot of patients at the very end of their rope are battling for even basic meds (LDN, mast cell stabilizers, etc, etc), let alone experimental ones.
Meds should be easier to access than assisted death. We’ve got to change the thinking on this. “Let them take meds!”
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mswalker retweeted
Apr 17
BREAKING: Just 20 minutes before Trump's announcement that the Strait of Hormuz was open, massive trades hit the market.
Investors sold a combined 7,990 lots of Brent crude futures, a $760 million bet that oil would go down.
These orders were much larger than anything else at the time.
The traders made huge gains.
Unusual.
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I’m not able to comment on this , but curious to ask @PutrinoLab if there’s any plans to incorporate SLEEP data in coming studies (either in before/after data collection, or maybe an entire arm including the addition of sleep interventions)?
Dysregulated sleep, certainly seems pervasive amongst the chronically ill. I can’t help but wonder how a DORA (orexin agonist) might impact outcomes in these same patients?
Apr 16
We believe a major driver of cognitive dysfunction in LC, similar to Alzheimer’s is energetic crisis and neuroinflammation. pTau-181 is, IMO, a marker of metabolic distress, amyloid aggregation is the ‘trash’ not being taken out. We believe it to be reversible. 🙏🏻
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mswalker retweeted
We don’t allow mining in Yellowstone.
We don’t allow mining in Glacier.
We don’t allow mining in Yosemite.
We don’t allow mining in Zion.
We don't allow mining in Acadia.
We don't allow mining in Grand Teton.
We shouldn’t allow mining in the Boundary Waters.
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mswalker retweeted
ME/CFS is perhaps the only condition where ‘mild’ is defined as a loss of 50% of functioning.
It’s hard to think of another condition where such a loss of capacity would be seen as ‘mild’.
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mswalker retweeted
Apr 5
if you're The Onion writers do you just give up at this point
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Delighted to see the FLUVOXAMINE in Long Covid study results (disappointed to see all of the biased / unwarranted criticism of these important findings).
I started taking Fluvoxamine in month 6 of my illness (12.5mg - FAR less than the 100mg 2x/day used in the study) and it had a VERY SIGNIFICANT impact on my symptoms (fatigue & dysautonomia, zero depression/anxiety or otherwise).
The impact was felt very suddenly mid-day on day 9 of my treatment.
I eventually increased to 50mg/day (but not sure that I felt any improvement after 25mg).
Side Note: Around month 11, my symptoms began increase again, and 1 month later, I got Pemgarda mAbs. I slowly titrated off Fluvoxamine 4 weeks later b/c I felt I no longer needed it.
From my interactions with others on Reddit who tried Fluvoxamine, I feel fairly certain that it's yet another treatment (not a cure) that works for some, but not others.
Of SSRIs, Fluvoxamine is the most potent sigma agonist. To read more about possible mechanism, see the section, "Fluvoxamine as a potent sigma-1 receptor agonist" from the following 2023 publication:
pmc.ncbi.nlm.nih.gov/article…
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