#post viral syndrome

[impotsiblelife]

Don't feel bad if you haven't recovered from a condition your doctor says is "very treatable." Doctors and society in general often underestimate how debilitating pain, physical illnesses, and mental health problems can be. Don't listen to anyone who insinuates that you don't want to get better or aren't committed to your treatment because your symptoms haven't improved much. Take as long as you need to heal.

#long covid #chronic illness #spoonie #disability #pots #ibs #brain fog #mental health #treatment #post viral syndrome

[m-e-and-more]

Not all #LongCovid is #myalgicEncephalomyelitis.

While its super important to raise awareness of the simularities of the #millionsMissing with #MECFS and #millionsMore with #LongC it is also essential to recognize that only a subset of #covid #longhaulers meet the criteria for a diagnosis of ME.

ME aka #ChronicFatigueSydnrome is not the same as #chronicFatigue. The defining symptom of ME / #CFS is #PostExertionalMalaise or an exhasurabtion of metabolic, neurological and immune dysfunction symptoms 24-48 hours after exertion.

When you are talking about long covid patients who experience #PEM you should talk about MECFS because that is what these patients have.

When you are talking about long covid patients be clear that only the subset with PEM have MECFS.

It is important for patients with long covid to receive the correct diagnoses, because while there are no FDA approved treatments for ME, many commorbidities do have effective medication options. Management of ME must also be tailored based on a patients commorbidities.

Patients with MECFS and post viral fatigue syndrome must not be prescribed GET or CBT. This includes all long covid patients with PEM.

Long covid patients who experience PEM should be advised to #StopRestPace and informed about the importance of pacing agressively not just to prevent symptoms from fatigue but to prevent PEM in the following days. This is regardless of whether they have PVFS (less than 6 months post covid) or MECFS (more than 6 months)

Because long covid is a broad category that encompasses patients MECFS #MCAS #fibromyalgia #POTS #dysautonomia #autoimmune and #autoinflammatory diseases in many combinations the prognosis for long covid patients is much more variable than that of ME patients and recovery is more likely in early stages of ME, long covid patients who recover should not generalize their experience onto MECFS patients more broadly and should continue to support MECFS research.

MECFS patients have decades of experience with pacing, medical gaslighting, chronic illness, housebound and bedbound life and more. We hope that #covidLonghaulers will #LearnFromME and ally with us to end #postViralIlness

#mecfs #long covid #long haul #millions missing #millions more #post viral illness #post viral syndrome #post viral fatigue #chronic fatigue #chronic fatigue syndrome #myalgic encephalomyelitis #education #health #evidence based medicine #covid #chronic illness #chronically ill #pots #mcas #dysautonomia #fibromyalgia

[calystuf]

— personalização ios ( soft pink theme ) ✩

Fiz essa personalização em vídeo, clique aqui " ✩" para ter acesso e ver como fiz essa personalização inspirada na new era.

#ideias #personalización #personalização #personalization #kpop lockscreen #moodboard #like or reblog #reblog ask #icons kpop #hello kitty #ask viral #ask blog #ask #hello kitty png #my melody #min yoonji #kpop edits #idéias user #userstream #post viral syndrome #youtela #youtube #post viral #youtumblr #gg lockscreens #icons #kpop boys #gg wallpapers #wallpaper collage #wallpapers kpop

[myalgicencephalomyelitiscfstom]

#LongCovid #post covid #post viral syndrome #MEcfs #PwME

[auressea]

I know a number of people who are NOW chronically ill. Many of them have not been given any support or resources to adapt.

additionally-Newly disabled people can take a really long time to come to terms with reduced function and barriers.. there's a long process of overcoming our internalised ableism.. to accept our new landscape.

Please. PLEASE-- allow yourself to REST. PACING is IMPORTANT!

#ME/CFS #chronic fatigue #chronic disability #living with chronic conditions #rest #long covid #post viral syndrome #inclusion #access #human rights #disability rights #pacing is important

[headpainmigraine]

Gonna get a tshirt that says 'I had post-viral syndrome before it became-marginally-more-known-as-long-covid-and-had-a-little-more-attention-paid-to-it-by-medical-science-but-not-much-more-because-no-one-cares-about-chronic-conditions-even-after-a-pandemic-increases-the-number-of-cases'

#cw covid #long covid #post viral syndrome #dysautonomia #me cfs #chronic conditions #chronic illness #spoonies

[thesecretlifeofmecfs]

me_and_more

#mecfs #cfsme #chronic fatigue syndrome #myalgic encephalomyelitis #long covid #pvfs #post viral fatigue syndrome #post viral syndrome #post viral illness #raising awareness #disability advocacy #patient advocate

[erinshhh]

Reminder

“Vaccination against SARS-CoV-2 lowers the risk of long COVID after infection by only about 15%, according to a study of more than 13 million people.” https://www.nature.com/articles/d41586-022-01453-0

#lettering #hand lettering #long covid #covid safety #no COVID for Christmas #respiratory illness #mecfs #post viral illness #post viral syndrome #chronic illness #spoonie #disability #disability community #mask up #mask up to save lives #wear a mask #n95 mask

[cruentaquevivere]

Palpitations and Meditation

My heart pounds like a drummer,

the beat rapid fire in my chest

with the impact force of a vehicular

crash, but I passed all the cardiac tests,

so there’s nothing for medicine to do

but suggest I try to wait it out

and hope it goes away soon.

Despite fervent hoping, I’m starting to doubt

that this experience will ever fully end,

and what can I tell myself to counter the fear

of never truly getting better when post viral syndromes

have been known and ignored for years?

Long COVID might have gotten lots of press

that was withheld from other conditions

but the world’s moved on from all things COVID,

returning to life without masks or inhibitions.

Large crowds are once again the norm

and there’s barely a mask in sight.

I don’t judge others personal decisions,

but I still struggle with how all right

everyone seems to be these days

in this so-called post-pandemic time,

while I’m still filled with anxiety

and I’m definitely not fine.

I am just as pandemic fatigued as everybody that I know

but when even walking makes it hard to breathe, that fatigue doesn’t show.

I don’t know what the answer here is

but I wish at least I felt visible

instead of my illness being forgotten

or worse, accused of being fictional.

Thankfully these days the medicinal community

finally acknowledges syndromes long scorned

but that acknowledgement does not

assist in society being informed

and it’s not doctors I spend most days with

so mostly I just feel disregarded and ignored.

I know we can’t always focus on suffering

but a little acknowledgement is all I’m asking for.

I’m trying my best to still have a life

but sometimes I want to call it quits,

curl up under the blankets for a year

but I’m too afraid of what I’ll miss.

How are we still in this place where invisible

means an illness doesn’t matter

after years of opportunity for a paradigm shift

and so much activism chatter?

Despite resolute demands for change

and unyielding marching in the streets,

much of society reverted right back

to the safety of make believe peace,

but the quiet is not without risk

and more transformations are needed

than just those affecting me

and we’ve all been cheated

if we allow this momentum to fade.

We’re all sick and tired in different ways

yet we can’t quit now, so then

will we fight for better days?

11 November 2022

#I got VERY sidetracked #and this veered WAY off course #poets on tumblr #poetry #my poem #nanowrimo #nano 2022 #long covid #long hauler #long covid symptoms #post covid #post viral syndrome #post viral illness #heart palpitations #anxiety #chronic fatigue #fatigue #stress #activisim

[longhaulerbear]

Influenza (with or without pneumonia) was the most commonly associated viral endpoint, significant in five of the six NDDs studied. Viral encephalitis, intestinal infections, and varicella-zoster virus were also significant and replicated for more than one NDD.

The results described above are supported by recent findings in the literature, which suggest an association between herpes simplex virus (HSV) encephalitis and AD,8,9 AD and hepatitis,10,11 genital warts and dementia,12 EBV and dementia,13 and MS and HSV.14

#post viral syndrome #post viral illness #influenza #long covid #neurodegenerative diseases #science journal #me/cfs

[normal-newt]

Sometimes I go through a phase

Called post-exertion malaise.

My spoons have expired

I’m so freaking tired,

That I now need to rest for three days,

#shitty poetry #just venting in the form if limericks #like an annoying bard from a kids movie #me/cfs #post viral syndrome #post exertional malaise

[myalgicencephalomyelitiscfstom]

New review article by 2 eminent US physician scientists [Anthony Komaroff & Ian Lipkin]:

ME/CFS & #LongCOVID share similar symptoms & biological abnormalities: road map to the literature

Free fulltext: https://www.frontiersin.org/articles/10.3389/fmed.2023.1187163/full

#myalgic encephalomyelitis #chronic fatigue syndrome #long covid #covid long hauler #post viral syndrome

[auressea]

#post viral syndrome #Long Covid #ME/CFS #just spoonie things #research #medical research #living with chronic conditions #chronic pain #chronically chi'll

[pandemic-info]

Unrest (on Netflix): a documentary about ME/CFS (myalgic encephalitis / chronic fatigue syndrome)

This important film will be removed from Netflix (USA) on November 6th.

However, if a lot of people (even partially) and rate it up, they might keep it — it's happened before (allegedly).

#long covid #me/cfs #pasc #post viral sequelae #post viral syndrome #post viral illness #documentary #unrest

[headpainmigraine]

I know this is a dick move, and I'm aware of that, but a large part of me cannot help but feel bitter about the posts going round about how awful long Covid is when some of us have been living with post-viral syndrome/ME/fibro/similar for so long and no one seems to have given a crap.

Just the fact that no one is calling this post-viral disorder/syndrome/what have you rubs me up the wrong way.

Like, we have BEEN here.

Just for someone to acknowledge that would help.

#chronic illness #spoonies #chronic pain #chronically ill #disability #covid #long covid #ME #chronic fatigue #fibromyalgia #fibro #just having a bit of a sulk #post viral syndrome

[hellyeahsickaf]

"My body hates me" "Ugh I hate my lousy ass body always holding me back" "I'd hang out but my stupid body's too fucked up to let me" I know it feels like your body's working against you but it isn't- it's doing its best to protect you and keep you alive

If your chronic illness is post-viral and/or autoimmune your body's doing everything it can to fight a constant battle against what it believes to be a threat. Sometimes it develops because an infectious disease has interfered with the functions your body carries out. And some illnesses develop symptomatically as a survival response because your cortisol production indicates that constant fight or flight isn't working so it forces a freeze response. If you're in pain, fatigued, have brain fog, etc, you can't exert yourself and are forced to conserve your energy. That way you don't overdo things and possibly compromise your survival. It feels like a lousy survival response, it really sucks, but it's still an indicator that your body's doing its best

You can hate your symptoms and vent about how much they suck, I know they truly suck balls and some days I just wanna scream and break things while I'm in bed struggling to keep my eyes open. Just don't forget that your body doesn't "hate" you and you should treat it kindly. Many symptoms like pain are there to tell your brain something's threatening it- even if your nerves are misinterpreting sensations like strong temperatures and sending pain signals to your brain. Billions of little cells and microorganisms are working 24/7 to keep you going. Those little guys carry out so many functions and none of them are for the sole purpose of making your life harder. It always comes back to your body trying to survive

#chronic pain #chronic illness #cfs #fibromyalgia #disability #chronic fаtiguе ѕуndrоmе #actually disabled #spoonie #me/cfs #cfs/me #long covid #post viral #autoimmine disease #chronic fatigue syndrome #chronic disability #chronic fatigue #actually chronically ill