mswalker

Watching with horror as we guard FDA approved meds with an iron fist while patients decline and die of persistent infection.

[mswalker @mswalker]

What do you make of the doctors in this thread who aren’t even seeming to acknowledge that something new (LC) has arisen?

It’s not that ME/CFS like conditions are “new” but this surge in numbers certainly is.

This is what is disconcerting, I’ve seen numerous other threads over on Reddit where Dr’s are complaining about “all the tired patients” with their “tick toc /Instagram illnesses” (POTS, MCAS, fatigue, etc). It’s so dismissive & unprofessional 😤

These conditions aren’t remotely funny. I’ve never been to the doctor so much in my life. Who has time to be sick? I have no reason to waste anyone’s time (especially my own).

I’m very happy that you’re aware of what you’re seeing. You are in the minority, unfortunately.

[mswalker @mswalker]

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.

[mswalker @mswalker]

I suggest you read the thread yourself. It precisely matches my experience of suddenly having my perfectly healthy existence traded for a medical nightmare.

NONE of the Dr’s that I’ve seen seem to know…. anything. I ask them, do they see a lot of Long Covid patients?

“Nope, not seeing any… anywhere…”

I ask, “But how can that be? The research I’m reading says that Long Covid is striking a significant % of people, with enormous economic consequences across the globe. Fatigue is one of the most common symptoms.”

Them: 🤷‍♀️🤷‍♀️🤷‍♀️

It’s honestly shocking. It feels scandalous.

[mswalker @mswalker]

@alexandrite113 @AndrewG76201347 What happens to your BP when you sit or stand? Is that dropping?

[mswalker @mswalker]

“Super expensive” feels so arbitrary.

When government agencies do calculations to determine how policies impact human lives (environmental impacts, deaths, etc) - the figure they use is around $10-$15 million dollars for a human life.

Is IVIG less than that?

Our lives are priceless, and there are hundreds of millions of lives to save. We need to figure out the roadmap to recovery & mass-produce all of the components (because the “cure” will likely be individualized combinations of treatments).

[mswalker @mswalker]

@peacenicsta @Yrrepmot I get that. I live in a liberal bubble & I’ll admit that I’m insulated from a lot of the craziness.

So my experience is different from yours. I see hordes of obvious bots out here spreading lies & I can easily just ignore them.

Their lies harm both of us - that’s for certain.

[mswalker @mswalker]

You say “most people who claim vax injury…”

Have you ANY IDEA that the VAST VAST VAST majority of the comments posted making this claim, are most definitely NOT “people?!”

Every thread you ever see that gets brigaded by multiple such comments - these are generated by bot farms. Same with a certain % of the extreme political garbage.

Most people who I’ve interacted with who’ve been injured by this vaccine are a lot like me. We just want answers. Where is our research & best path to recovery? We just have to follow all of the Long Covid research & assume that the conclusions apply to us as well.

[mswalker @mswalker]

In reality, they haven’t made a good faith effort to study the numbers of people who are vaccine injured, so i vehemently reject anyone who claims that it’s so rare.

Do we go out of our way to call Long Covid “rare?” Of course not.

Just look at all of the virus-induced long haulers who also can no longer tolerate further boosters. It’s a significant %…!

The covid spike protein is harmful. Some of us got harmed (not acutely - chronic illness, like LC) from the vaccine & our numbers are NOT insignificant.

[mswalker @mswalker]

@Emcee322 @NYMag Do you know who gets both menopause and the overwhelming share of Long Covid?

WOMEN. Especially those in middle age.

Everything about her story is textbook LC. It is life altering and the world is insanely oblivious.

[mswalker @mswalker]

This is something that I think about a lot lately. I’m significantly recovered & so just have dysautonomia remaining (early in my illness, I believe my symptoms more resembled chronic fatigue).

I started a treatment recently (for me, fludrocortisone) and was shocked at how quickly & thoroughly it extinguished my symptoms from my recent dysautonomia flare up.

It has me wondering what % of people with CFS have a major dysautonomia component too. With CFS, you feel so death like that it’s hard to distinguish where all of the misery is coming from.

Now, I am of the opinion that inadequate oxygen perfusion must have some contribution (I still think the primary driver is virus/antigen). Wouldn’t that make sense? If your brain is regularly getting signals that you’re starved for oxygen (bc it’s pooling elsewhere & not being effectively delivered), that must have a cascade of downstream effects, don’t you think?

I’ve not been on midodrine & surely understand that you can’t just “try things” carelessly in your state. I just wanted to mention this thought bc nicotine is, of course, also a drug, and this one, having similar effects might be one that is more effective or tolerable for you (?)… who knows…

[mswalker @mswalker]

@frostykaden @sunsopeningband I think you can just easily tell that some of these content creators are AI. I mean, look at the format of this post. Isn’t this blatant AI? I’m open to being corrected, but this seems obvious to me?

I’ve interacted with this dude & his own written words are nothing like this.

[Harry Spoelstra @HarrySpoelstra]

Comprehensive Immunophenotyping of Monocytes and Dendritic Cells Suggests Distinct Pathophysiology in Chronic Fatigue Syndrome and Long COVID

🚨Interesting new decisive data confirming divergence:
ME/CFS and Long COVID are NOT the same disease!

➡️This international study used multiparameter flow cytometry on peripheral blood mononuclear cells to compare immune profiles in ME/CFS (n=103), Long COVID (n=63), and healthy controls (n=41). It targeted monocytes (M1/M2-like), dendritic cells (DCs), and T-cell subsets to uncover disease-specific signatures,

➡️Long COVID Profile:
- Marked by increased M2-like monocyte polarization, elevated CD80 (costimulatory marker) across monocyte subsets, DC expansion, and paradoxically reduced activation markers (e.g., CD69+CD38),
- Indicates persistent immune activation combined with exhaustion features,

➡️ME/CFS Profile:
- Characterized by reduced costimulatory molecule expression (e.g., lower CD80 on DCs/monocytes), impaired CCR7 expression (disrupting immune cell trafficking), and less coordinated activation patterns, consistent with immune suppression,

➡️Additional Analyses:
- Correlation networks showed more extensive, integrated immune interactions in Long COVID vs. fragmented patterns in ME/CFS,
- Principal component analysis (PCA) and PLS-DA revealed distinct immunophenotypic clusters, enabling moderate discrimination between the two conditions (AUC ~0.76 in moderate cases),

➡️Implications:
- Age-adjusted statistics confirmed differences,
- Findings point to divergent post-infectious immunopathologies rather than a shared syndrome,

➡️Conclusion:
- ME/CFS and Long COVID are not the same disease,
- They drive opposite immune failures, one of chronic hyper-activation tipping into exhaustion, the other of outright suppression and trafficking collapse,
- Treating them as interchangeable is scientifically indefensible and clinically harmful,
- Distinct biomarkers now exist:
→Separate pathophysiology demands separate diagnostics and therapies!
#MECFS #LongCOVID #AvoidSars2 #AvoidReinfections
https://t.co/pMKdJKcxoA

[mswalker @mswalker]

@KellyScaletta Or maybe we’re enticing / enlisting them to act as (ICE) “bouncers” at mid-term polling locations 😳

[mswalker @mswalker]

“Who is it?” There are multiple… & they are prolific.

I am torn, I read a few of them, but I trust their assertions & conclusions about as much as AI (partial belief, partial skepticism).

I think there is a place for some AI summaries, just to keep pace with the sheer volume of published info, but I wish I knew if these accounts were also at least skimming the articles to reconfirm content they’re generating/sharing.

[mswalker @mswalker]

@1goodtern @TakeWeightOffMD He’s a Rage Farmer.

He profits from our response. I’ve blocked him.

[mswalker @mswalker]

Dear @Surgeon_General - America has failed at Job #1: TRAIN DOCTORS.

Please take a look at what this doctor has to say about their patients with chronic conditions!

…Psychiatric? These are the idiots we have to deal with!!! Do you understand how much money/time/health is being waisted seeing such uninformed dolts?

#TrainTheFuckingDoctorsAlready!!!

[Juul @tiredjuul]

https://t.co/f13osnevRL

Yikes

(If you respond your response will get deleted as only medical professionals are allowed there)

[mswalker @mswalker]

I get the concern around being exploited for your data, but I still think **IF** this data is “solid” it would be useful for some who have more prominent dysautonomia. I definitely read some dissatisfied customers from the earlier Lumia device, so IDK if this will have more accurate data?

In my case, I think I’ve got my dysautonomia mostly under control again just recently. Im scheduled to try PT in June. If I had this device, it could help me understand cerebral perfusion in different states: at rest, recumbent exercise, walking, etc. I think that info could really help!

Could it help sicker patients? If it worked (big if) maybe it could.

Too bad this won’t ship till Dec (or so).

[mswalker @mswalker]

@NeleHelena And, here’s the other:

[PharmacyUpdateOnline @PharmacyUpdateO]

Daridorexant - transforming insomnia management https://t.co/6r0E9VkpMG

[mswalker @mswalker]

I see someone else commented about daridorexant. I agree with you that there is “something else going on” with some of our sleep issues!

I hadn’t tried other sleep drugs, but was interested in this class of orexin antagonists.

If you’re interested in learning more, these two audio clips were informative for me:

[Psychopharmacology Institute @PsychopharmInst]

Use of Daridorexant for the Management of Chronic Insomnia

In this Quick Take, Dr. Carlos Schenck discusses daridorexant as a treatment option for patients with chronic insomnia, especially those with an incomplete response to current therapies.

https://t.co/tEO9PWKERV

#SleepMedicine #InsomniaTreatment #Daridorexant #DORAs

[mswalker @mswalker]

@NBoydGibbins @wtogami Inflammation reduction has to play a significant role.