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#post viral syndrome
impotsiblelife · 2 years
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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.
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m-e-and-more · 1 year
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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
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calystuf · 5 months
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— personalização ios ( soft pink theme ) ✩
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Fiz essa personalização em vídeo, clique aqui " ✩" para ter acesso e ver como fiz essa personalização inspirada na new era.
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auressea · 7 months
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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!
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doctormagnet · 1 year
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What To Do When You Have A POTS Flare Outside Of Your Home
[obligatory 'i am not a doctor i am just chronically ill and sharing things that i had to learn the hard way' disclaimer]
hello! my name is ivan + i have pots caused by post viral syndrome. despite 2 medications helping to control my pots i still get flares at the worst times (mostly at school or situations similar). this post is a list comprised of all the things that i have done that help reduce/stave off the flare
be prepared and have salt tablets/liquid iv/water/etc with you when you go places
kind of obvious and most people w pots i know already do this but its very useful to be prepared
2. try to locate salt if possible
luckily most of the places i go to frequently have salt available (because i never bring my salt pills with me. whoops). if possible, add salt to your water or just eat it raw. implied in this step is also locate and drink water if you dont have any/enough on you
3. try box breathing
box breathing is a technique where you breathe in for 4 seconds, hold for 4 seconds, exhale for 4 seconds, and hold for 4 seconds. the theory behind this is that it helps regulate the nervous system. your mileage may vary with this, but i have found it helpful
4. if temperature regulation is an issue, follow your plan for that
lately my pots has been giving me hotflashes out of nowhere. i dont have much advice besides. cold rag on your face and as little clothing as possible which is not applicable in most situations. splashing cold water on your face may help as well as removing any excess layers of clothing
5. lie down with your feet raised
if applicable, this tends to help the most. having your feet raised helps the blood stop pooling in your legs
6. watch a youtube video/listen to a podcast/etc
while lying down this is very useful for passing the time (ideal if you have headphones or are able to be in a room by yourself)!
7. have a plan for leaving if the flare gets worse/you cant effectively treat it where you are
i think this one is the most important. you need to have a plan for what to do if you need to go home from where you currently are. you should try to establish a plan for when you get home (ie: if you have a special routine for pots flares try to have all tools/meds/etc in one accessible place). i would also have an email template if you need to notify professors about missing class/making up homework/extensions/etc
please leave other tips you have in the comments and another reminder this is based off of my personal experience. it is not a definitive guide, just things that have helped ME deal with pots flares!
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cyboaronline · 8 months
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post i feel obligating to make: chronic lyme disease and post treatment lyme disease are not the same thing. one is Not Real and the other one is medically recognized as a real phenomena similar to long covid.
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headpainmigraine · 1 year
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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'
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me_and_more
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erinshhh · 1 year
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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
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cruentaquevivere · 1 year
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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
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longhaulerbear · 1 year
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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
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normal-newt · 1 year
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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,
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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
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auressea · 11 months
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doctormagnet · 1 year
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how to do a standing test
[disclaimer: i am a disabled person sharing my experience and NOT a medical professional]
what is a standing test? a standing test is a test where you lie down and then stand up, checking your blood pressure and heart rate at set intervals. i have been instructed to lie down for 3 minutes, stand + check at 3 minutes and 7 minutes.
what does a standing test tell you? objectively it tells you your heart rate and blood pressure while lying down and while standing. this information may be useful to you if youre having a bad symptom day or just see how much you can tolerate.
what do i need for a standing test? ideally you would have a pulseox and a blood pressure machine, but if you have just one you can still do it.
how do i do a standing test? as i mentioned before, you lie down for 3-5 minutes and check your vitals. then you stand for another 3-5 minutes and check your vitals again, and check them again another 5-7 minutes later. when standing it is very important you move as little as possible to get the most accurate results.
i hope this was helpful!
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