💜Phoebe

I like stories about successful medical appointements.

[💜Phoebe @fgtheodora]

So : my best friend (former best friend, really, but does it matter?) is currently in hospital with respiratory failure due to "flu" (we all know what that means),which brings the percentage of people I'm still in touch with who have severe damage from Covid to 100%. For the...

[holocene @holo_cene]

a lot of people are like ‘oh i support your mask-required show it’s such a good idea!! but yeah i wouldn’t mask everyday tho’

ok so you support me yet everyday you participate in the very spread of the virus that makes me unable to play any show if i don’t organize them myself?

[Kelly @broadwaybabyto]

Non disabled people think being sick is like a vacation.

They get to take a few days off work while KNOWING things will get better.

They can’t fathom a reality where there’s no “better”

Where you’re sick every single day.

So they blame us.

Shun us.

Tell us to “try harder”.

[💜Phoebe @fgtheodora]

@subversivepsych Even though I'm way too sick to ever try, I'm so interested in this at the moment.

[Carnivora  @CarnivoraCC]

Best advice against the heat?

Radically battling climate change.

[kirbs 🦋 @kirstymecfslife]

Curious how many people have sudden moments of intense muscle weakness.
Maybe It’s harder to say with very severe ME. For those that are still able to walk a bit , stand , sit upright do you have moments where youre Ok-ish (still shit) and then within seconds feel unexpectedly 100x worse with many symptoms and then feel muscle weakness so intense you have to lie flat and then feel you can’t move your limbs anymore. The last part is described often but I’m curious how quick this shift happens? Is it usually gradually for most or does it happen when you don’t expect it suddenly ,does it feel like an “attack”? Im sorry it that’s wrong word but idk how else to describe it.

[Carole Bruce @CaroleBruce17]

‘Parked on benefits’ because in the case of #ME and #LongCovid governments have repeatedly refused to finance biophysical research into post-viral illness and chosen to follow a BPS model which has never worked. It’s economically and humanely ignorant. We long to be able to work

[Whitney Dafoe @DafoeWhitney]

The trip to the dentist wasn’t too bad!  Thank you all for your support 💙🙏

I’ve been pretty exhausted and out of it, but I don’t think crashing or worsening.  But that may be because of something interesting that happened at the visit (see below)

This short video is a fun, comical, and sad chronicle of the trip.  I got 2 root canals, and have to go back for 2 more visits (!!) to take care of the rest of my roughly 30 cavities.  All from not being able to brush when I was extremely severe for 7 years.  (I saw a dentist shortly before becoming bedridden and had no cavities)

Something interesting happened that I need to investigate and report back on.  When the dentist injected the numbing agent, it had a strong soothing and calming affect on my entire nervous system, sort of enhancing the effect of the Ativan and making the trip much easier on me.  Why?  Was it:

1.  The numbing of a nerve signaling pain and thus no more pain signaling?
2.  The numbing of nerves in general?
3.  The specific numbing agent used and the affect it had?  

What would happen if I got a stellite ganglion block with that same numbing agent?  (assuming it’s not the same)

I’m going to call the dentist as soon as I recover a bit and find out what he used and report back! 

Love,
Whitney 💙

=================
=================

#mecfs #spoonie #chronicillness #pwME #LongCovid

[Charles W | Protect the Heart of the Arts ♿️💕😷 @waltz_tales]

@CovidSolidarit1 Honestly, I wonder why more people don’t follow up “died mysteriously” with: let’s investigate.

Even crows will do a death investigation when one of their members dies suddenly.

[Nina Wildflower @Ninawildflower]

I work full-time, in person.

Thank you to everyone who works remotely. COVID has not gone away, and by working remotely you make it safer for those of us who have to work in-person.

[Brian Fog @useless_priest]

I wonder if there's any other stuff caused by other viruses that we should think about preventing.

[Kelly @broadwaybabyto]

More US soldiers died from the flu during WWI than from combat.

Viruses kill and they’re especially dangerous in militarized zones where people live in close quarters.

Ending vaccine mandates will cause preventable death and disability.

[Masked Rogue 😷 🇵🇸 @unMaskedRogue]

How come I never see any of these MAID supporters advocating for better living conditions for the people that they insist should have access to MAID? 🤔

[Olive Siffleur @OliveSiffleur]

People get real angry when you want the resources to carry on with a life they personally believe "isn't worth living" instead of accepting their framework that offering you death is charity.

[💜Phoebe @fgtheodora]

@arianek This is vital information.

[ArianeK 💜 #Care4Complex (she/her) @arianek]

Just your regular reminder that shingles is TERRIBLE. If you are going to go on immune suppressants, INSIST on being vaccinated first even if you’re younger. I was denied the vaccine and am having a terrible recurrence (originally triggered by Rituximab). 😭 #Care4Complex

[Manuel Ruiz @manruipa]

⚠️💊 Long COVID and ME/CFS: a layered strategy, not a single treatment for everyone

One of the mistakes when talking about Long COVID and ME/CFS is looking for “the treatment”, as if all patients had exactly the same mechanism.

They do not.

But that does not mean there is no common logic.

The model I propose is to think of these diseases as post-infectious processes maintained by layers:

A persistent pathogen or a sustained antigenic source.
Chronic immune hyperactivation.
Immune exhaustion and poorer control of latent pathogens.
Secondary reactivations that add more antigenic load.
Systemic consequences: inflammation, mast cells/histamine, oxidative stress, barrier dysfunction, autoimmunity, dysautonomia, neuroinflammation, endocrine alterations or vascular involvement.
Baseline treatments and then treatments directed according to the dominant mechanism.

The key is not to place all layers at the same level.

Not everything is a primary cause.

Some things are consequences.

And some consequences, once they appear, can become amplifiers that maintain the vicious cycle.

Long COVID and ME/CFS: same model, different degree of classification

For me, Long COVID and ME/CFS are not opposite processes.

They may follow the same post-infectious model.

The main difference is that Long COVID is better classified by its initial pathogen: SARS-CoV-2.

By contrast, ME/CFS is a more heterogeneous label where post-infectious patients initiated or maintained by different pathogens may be grouped together: EBV, HHV-6, CMV, enteroviruses, parvovirus B19, Borrelia, Toxoplasma or other persistent, latent or intracellular pathogens.

In other words:

Long COVID would be a post-infectious disease defined by SARS-CoV-2.

ME/CFS could include several similar post-infectious subtypes, but initiated by different pathogens.

The underlying logic would be the same:

persistent pathogen or antigenic reservoir
→ continuous immune stimulation
→ chronic immune hyperactivation
→ sustained inflammation
→ T/NK cell exhaustion
→ poorer control of latent pathogens
→ new reactivations
→ more antigenic load
→ more inflammation.

Therefore, the problem would not be that Long COVID and ME/CFS have nothing to do with each other.

The problem is that ME/CFS probably mixes post-infectious patients of different origins under the same clinical label.

▪️Long COVID: SARS-CoV-2 as the initial persistent source

In Long COVID, the initial axis would be the persistence of SARS-CoV-2 in tissue or cellular reservoirs, with sustained or intermittent production of viral antigens.

There does not necessarily have to be detectable viremia in blood.

But if the immune system keeps seeing viral antigens months or years later, those antigens are not well explained as simple passive “remnants” from the initial infection.

The body degrades proteins and RNA through proteases, nucleases, autophagy, the proteasome, cellular turnover and immune clearance.

For this reason, prolonged presence of viral antigen points to a sustained source:

tissue reservoirs;
infected cells;
low-level persistent infection;
abortive or incomplete infection;
intermittent production of viral material;
local reactivation;
or cellular persistence in tissues where the immune system does not properly eliminate the stimulus.

In other words:

if there is persistent antigen for months or years, we need to think of some type of reservoir or biological source that renews it.

That stimulus keeps the immune system chronically activated.

And that chronic activation can lead to persistent inflammation, immune exhaustion and poorer control of other latent pathogens.

[Olive Siffleur @OliveSiffleur]

Uncritical MAID proponents have infinite wells of sympathy for disabled people who are eager to die—and exactly zero fucks to give for disabled people who want properly funded long-term care and not to be pressured to die instead.

[Melissa Challenor M.UrbDes @urbanmel]

It’s my 55th next Thursday

If you feel like treating yourself, go and grab an AirFanta device for your airborne safety 👇🏻👇🏻

If you feel like treating me, here’s a WISHlist of things that will make me so happy I might squeal 😁

https://t.co/5VXtgGpaxw

😷💨

[5hahem @shaTIRED]

COVID, it’s a cardiovascular disease, I thought this was common knowledge. Recovering from the initial symptoms don’t erase the irreparable damage to our hearts

[Coco @cocomarvgrows]

I lay awake last night marvelling over how society has forced us toward the margins for using respies and clean air to keep our families and communities from getting sick. It’s hard to believe.