#post viral illness

[myalgicencephalomyelitiscfstom]

Their profile says they have long Covid

[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

[jesusonafrickinboat]

May is ME/CFS Awareness Month!

ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Chronic Fatigue (CF), a symptom of many chronic illnesses, is not the same as Chronic Fatigue Syndrome (CFS). There is a push for ME/CFS to be exclusively known as Myalgic Encephalomyelitis (ME) in the future

ME/CFS is a complex, fluctuating, chronic medical condition affecting multiple body systems and symptoms can change unpredictably

Post-exertional malaise (PEM) is the hallmark of ME/CFS

More on symptoms: Symptoms of ME/CFS

ME/CFS affects an estimated 836,000 to 2.5 million Americans, the majority of those diagnosed being AFAB

An estimated 90% of people with ME/CFS are undiagnosed

About 25% of people with ME/CFS are bedbound or housebound for long periods

Most of those diagnosed never regain their pre-disease level of functioning

The root cause of ME/CFS is unknown

Possible triggers include: viral infections (such as mono, the flu, or COVID-19), bacterial infections, physical or psychological stress, and immune system changes. There may also be a genetic component

There is no cure or approved treatment for ME/CFS

However, some symptoms can be treated. For example, PEM is treated by pacing. More on treatments: Treatment of ME/CFS

ME/CFS costs the US economy about $17 to $24 billion annually in medical bills and lost incomes

The ME Association and the CDC have more in-depth articles on ME/CFS for more information

[pandemic-info]

I know unsolicited medical advice is never welcome, but I feel an absolute compulsion to mention #LongCovid & post exertional malaise to everyone I see posting about how they “just don’t feel like themselves/are weirdly irritable/can’t focus/can’t sleep/energy levels tanked.”

The first place most people jump to is “I’m probably depressed & I should push myself to exercise & get out more,” which would be fine if you’re actually depressed but disastrous if you have post exertional malaise.

I’m so desperate to spare even *one* person the agony of spiraling into #MECFS that I’m fine w/ being the unsolicited advice asshole.

Also, I’d bet my soul that #LongCovid is orders of magnitude more common than most people think because of the many people I know who almost certainly have it, only a handful have been willing to make even a tenuous connection between their post infection health issues & Covid.

[newhologram]

People are like, "Wow, you're so strong to live life disabled by chronic illness, I could never do what you do" and then won't wear a mask.

[wobblefloss]

STUFF I DIDN'T KNOW WHEN I WAS STILL ABLED...

Post-viral illnesses are a thing.

.

I mean, we all know about long covid now. When the covid virus does too much damage to organs, nerves, veins, arteries, and the immune system? Then it's 'hello, longterm disability.'

But think about before covid. People would say, "It's just a virus. It's not an infection. You don't need antibiotics or to go to the doctor. Just drink orange juice. Take some over the counter medicine. Sleep it off. It'll pass."

Which can be true! Yet, even in the before times, folks were catching and being disabled by 'just' viruses.

Long HIV = AIDS

Long polio = paralytic polio, post-polio syndrome

Long Chicken Pox = Shingles

Long HPV, hepatitis, & others = cancers

And 'Long' versions of lyme disease, mono, hepatitis, herpes, flu, epstein barr, and other viruses--they're all known to doctors.

They can lead to multiple sclerosis (MS), myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, POTS, mast cell disorders, heightened allergies and food sensitivities, chronic migraine, organ damage...the list goes on.

It's not 'just a virus,' and it never has been. You must rest and recuperate and listen to your body.

No, longterm problems don't happen to everyone or every time. And no, nothing is helped by panicking.

But if you still have symptoms after you're 'cured,' you're not making things up. Your mind isn't tricking you. This isn't your fault. Post viral illnesses and syndromes are real. Go talk to your doctor.

.

Seems like something we should all know.

.

.

.

Disability happens to people without our control or consent. Every single disabled person has strong feelings about their own situation and I would not presume to talk about anyone’s thoughts but my own. But none of us chose to do life on hardmode, so if the world could listen this month, there’s a lot to say.

[thesecretlifeofmecfs]

me_and_more

[cruentaquevivere]

So nauseous. Can someone turn my body off and then back on again to clean out whatever errors are causing this?

[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

[killerqueenofficial]

Can't stand people who are still claiming post-viral chronic illnesses are fake like don't you feel like a clown???? Claiming our lived experiences are a falsehood or a scapegoat??? Until it happens to YOU you will never understand, and I truly hope you never have to "understand" it tbh! It's a living hell! So maybe just listen to the experts aka the people who have to live with it every! single! fucking! day!

[clatterbane]

This afternoon's little planned adventure: my first solo shopping trip to the nearest supermarket! Which feels weird as hell to say when we've been in this place since January.

Tbf, I have rolled over to that shopping center on my own for other purposes, but every time I've ventured in for groceries so far it's been with Mr. C along doubling as pack mule. 😅

Not entirely thrilled about this state of affairs, but post-viral BS. More able to actually swallow a decent variety of foods, less able to actually get out in search of some! 🙄 And that isn't quite as easy a roll as to even the ICA roughly the same distance from Temporary Apartment; it has a lot more uphill (pretty much totally manmade, going over a road overpass), and some sections of tricker sidewalk without decent curb cuts.

At least they very purposely do make the burbs* pretty hikeable/walkable/wheelchair accessible here, is all I can say. And curbs/uneven pavement are actually doable for me as an otherwise fairly physically able manual chair user. It's just a PITA, and eats extra energy. It ends up being way more downhill on the way home loaded down too, which is much better than it could be. But yeah, this is enough older development around here that it shows some trying to get around.

(On the plus side? I did see some other guy out the other day with an electric handcycle attachment. And power assist devices are indeed supposed to be covered by the healthcare system here--unlike on Plague Island, like, at all. So, I am more hopeful about maybe wheedling one out of them now that I am properly covered, and things have settled down some on other fronts. Besides an aftermarket leg! Really hoping it's not "either/or" with wheelchair or prosthetic services, unlike our freaking NHS trust before. 🤬 Because everybody needs both available sometimes, properly set up to wreck their body as little as possible.)

Anyway, I am feeling pretty stir crazy on a sunny day, and also really need a few items like milk with him gone. Plus, naturally, I really want to poke around that big extremely international store some for the first time in ages, now that I can actually eat most of the stuff and the sight/smell of food isn't seriously fucking me up anymore.

My major challenge: not grabbing more shit than I can at least semi-reasonably cart home in my backpack, plus the couple of overflow bags hung on the back of the chair!

Bonus side mission: Swing by and scout out exactly where around that same shopping center one dentist's office is. 😰 Because yeah, I really do need to see one soon--and not just for that cleaning I had been trying to psych myself up for, now that we don't also have a bunch of medical charges to contend with. (Thankfully no pain so far, but I discovered a cavity which really ought to get dealt with before it reaches that point! Especially with local anesthetics not working on me. Probably more hiding in my mouth after the years of out of control blood sugar, tbh. Feel like I'm getting off lucky "just" noticing the one before anything hurts.)

Pretty sure I have a good idea where to find the place, but better to make sure before I start heading over there for an appointment! Which is nerve wracking enough when you do know exactly how to get there.

Even more reason to reward myself with some ice cream while I'm there. 😁 After the unaccustomed exercise, my blood sugar will probably need it anyway. Even though there are a couple of places I know of to get fresh scooped stuff over there, I'm actually tempted to try that funky soft serve vending machine. It looked interesting, plus no need to interact with anyone in Hard Swedish Mode when I may already be low on spoons.

_________

* We are apparently not technically in the suburbs here. The city center has shifted some over time, leaving this part of the actual city farther from it. But, everybody refers to it as such--and it does feel pretty damned suburban in layout, Swedish "Million Program" styley.

[myalgicencephalomyelitiscfstom]

From: Martin Arber

A blast from the past! This cartoon by the Arber’s first appeared in journal InterAction, the journal of Action for ME, in 1992 many years before the Pace Trial was published in the Lancet.

Subsequently this research was shown to be both invalid and dangerous but Horton, Editor of the Lancet, refuses to retract it. Recently it was offered to CoVed sufferers who were failing to recover. Unbelievable!

From:

[pandemichub]

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome has been known about since the 20th century (possible earlier though under different names or descriptions, documentation and research).

This headline and story is merely confirmation scientists, medical professionals and larger society is beginning to accept and acknowledge it. Or shifting towards acceptance and acknowledgement. The sharp and growing wave of covid long haulers world wide likely may be a major contributing factor.

It has been stated by some ME sufferers that CFS (chronic fatigue syndrome) has damaging history and has been used to invalidate and medically gaslight. The acronym used by members in the community varies, it is important to mention and recognize this that said.

"Like many other neurological diseases, up to 80% of cases of ME/CFS are initiated by infection. Several preliminary studies are now showing that nearly half of people with Long COVID have ME/CFS." - ME Action Network

MECFS and mortality

[zpublicc]

Narrative Inquiry

Hi all,

I am a doctoral student at Rutgers, Newark, NJ, in the school of public affairs and administration (SPAA). I am conducting a research project regarding the perspective of service use by people with long COVID.

This research will consist of interviews or electronic diary keeping. By doing this I hope to conduct a narrative inquiry and share the lived experience of those who have long COVID.

These research methods are being used to understand individual experiences with (1) seeking services (motivation), (2) what the barriers to service are, and (3) how the adequacy of those services is judged.

Individuals must be over the age of eighteen, English speaking, and self-identify as being a person with long COVID. Interviews will be conducted over ZOOM, or by phone. Interviews will take place until mid-April. The interviews should last from 30-60 minutes. Interviews will be used for a narrative inquiry.

Those who would rather complete electronic diary entries will be given prompts to complete within a week, at which point responses should be sent via email.

If you have any questions, please feel free to DM me. I will respond as quickly as I can.

What is a narrative inquiry?: https://deakin.libguides.com/qualitative-study-designs/narrative-inquiry#:~:text=Definition,ordered%20into%20a%20chronological%20narrative.

[iwillneverforgiveicanneverforget]

1. the pandemic transformed me into a bitter person.

Transcript (in French) below the cut

s'il y a y a des erreurs de grammaire, eh bien. en tout cas, la pandémie m'a transformé en personne amer. depuis quelques mois ma mère tousse fréquemment. des toux trempés, c'est carrément dégoûtant. il y avait quelques ans chaque fois ma mère toussait je lui avait demandé si elle avait besoin de l'eau, si elle allait bien. chaque et chacun fois, dans le passé. maintenant je m'en fous. je suis que énervé. parce que cette maladie qui la dérange était vraiment évitable. je sais qu'elle me crois pas vraiment quand je dis que je suis malade mais évidemment elle meurs d'avoir la connaissance à première main. si toussant jusqu'à les poumons sont à l'envers est la vie sans restrictions qu'elle veut autant alors profitez-en.

[cloversposts]

I miss wearing makeup

Are there any safe brands that won’t inhibit my immune system and don’t have fragrance? I’m having a hard time finding anything in searches.