#post viral fatigue

[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

[acarrcreations]

You know you have chronic fatigue when you check your calendar for tomorrow and it just says "DO NOTHING"

#I guess I better then #post exertional malaise #post viral fatigue #chronic fatigue #chronic illness #acarrspeaks

[clatterbane]

Seriously though, I am pretty much at the point of fighting serious urges to start slapping people in medical facilities now.

That is still the main place I have been going, dealing with the post-viral fatigue that doesn't seem to want to quit. After catching something suspiciously Omicron-like at a medical visit.

So, of course it is only a tiny minority of people--including the ones working with sick people all day!--who are wearing masks at all. The past few times I have gone for medical treatments which required staff getting right up in my face? They have been quick to tell me that I don't need the mask. 💀

Maybe not, but YOU SURE AS HELL DO. Unless you are trying to spread All The Germs you're breathing in all freaking day around to other patients who are liable to end up in much worse shape than I am from that. And I already do not want more possibly-preventable rounds with this particular garbage. Nobody needs that.

It really is frustrating, and honestly another reason for me to want to just avoid medical settings now. It really does feel like a certain disregard for patients' wellbeing.

A few possible explations, btw:

#personal #venting #plague time #post viral fatigue #medical fuckery #welcome to sweden

[internalmemos]

I don't know what's worse, realising that fatigue now makes me uninterested in being a spreadsheet nerd using excel, or that I'm upset about losing that nerdy little delight

#fatigue tag #chronic fatigue #post viral fatigue #fibromyalgia #the current theories

[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

[outoftoucherlocksholmes]

(american roadside billboard voice) HEAVEN is REAL and it is IN FLORIDA

#jojo's bizarre adventure #stone ocean #enrico pucci #father pucci #jjba part 6 #jojo no kimyou na bouken #i've officially entered batch three i am so frightened <3 #it's so so so good though like i am loving it a lot. BUt i am so so so frightened of the ending <3 #''didn't you start watching stone ocean back in january'' #yes but sometimes laptops die and websites glitch and girls get post viral fatigue that leaves them unable to do anything but #watch succession once a week and get really good at splatoon #''okay but didn't you restart stone ocean in march'' THAT WAS BEFORE THE FATIGUE THOUGH i'm better now <3 #it was also the very end of march it was basically april and that means it was only a couple of weeks before The Fatigue began

[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

#me/cfs #me/cfs awareness month #me/cfs awareness #myalgic encephalomyelitis #chronic fatigue syndrome #millions missing #chronic illness #disability #invisible disability #neuroimmune disorder #fatigue #post exertional malaise #pem #post exertional malaise awareness #pem awareness #post viral illness #me awareness #cfs awareness #long covid #awareness month

[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:

#graded exercise therapy #post viral illness #myalgic encephalomyelitis #long covid #chronic fatigue syndrome

[tenspontaneite]

Ok so literally no pressure, but I do have a kofi and if anyone feels like showing appreciation for my writing or art or I guess my cat via its medium, now would be a good time because there's a thing I really want to buy and I don't have enough birthday money left over for it lmao

(the thing is an art oriented android tablet. So that I can still draw shit when post work exhaustion compels me to collapse in bed against my desire to,,, you know, draw things.)

Link to my Kofi 👌

#life of sponty #cannot emphasise enough that this is not a necessary expenses thing #this is an if you feel like tipping a very tired artist thing #like man i literally just have to collapse in the afternoon #probably at least partially post viral fatigue #never quite recovered from covid #i still get exhausted walking a 20min round trip to the pharmacy most days. wack #rehab do be slow #anyway i have enough birthday money for like two thirds of the thing #any amount of the last third that yall feel like contributing would be lovely #but if none of you are feeling it i will simply have to engage my patience gland and fucking wait a while #which i am theoretically capable of #the last third is about £100 btw #tablets are money. unfortunately

[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

[clatterbane]

Another bit of pattern matching gone wrong in my tired little hyperlexic brain, which actually worked fine the way I did parse it at first:

"Coffee oil quickly builds up on the inside and requires paper towels or rage to clean it."

Paper towels and rage sounds more my style, tbh. Sadly haven't quite worked out the telekinetic rage cleaning yet. But, I reckon RAGS would work too. 🥴

#had to giggle #personal #hyperlexia #silly #brain fog #seriously though #i has the dumb #post viral fatigue

[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

[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.

#disability pride month #invisible disability #tw covid mention #post viral illness #it happens actually #listen to your body #postural orthostatic tachycardia syndrome #pots #mast cell activation syndrome #mcas #dysautonomia #me/cfs #myalgic encephalomyelitis #chronic migraine #chronic illness #chronic fatigue #multiple sclerosis #ms #organ damage #viruses can permanently hurt your insides #please don't blame yourself #please believe yourself #please get help

[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

[jesusonafrickinboat]

As someone who has post-viral disabilities/conditions, it absolutely INFURIATES me that, despite a mass rise in post-viral disabilities/conditions (aka long-covid), IT’S STILL NOT BEING RESEARCHED.

I had a virus in May 2016 (end of 8th grade), the symptoms of which (plus more as time went on) never went away. I was diagnosed with celiac disease in 2017, followed by POTS, fibromyalgia, CFS/ME, chronic pain, and more - none of which have a cure. (There are also several conditions that I’ve researched and am almost certain I have as a result of that virus over half a decade ago, but I’m still waiting to get appointments with those specialists.) Since being diagnosed, I have done various treatments/medications, had many appointments with specialists & physical therapists, and have done basically all I can to get better.

Now it’s 2022. It’s been 6 years since the virus and 5 years since the first diagnosis. Can I do more than I could in 2017? Absolutely! I don’t want to say that it will never get better, because it does - just slowly (and at a different pace for everyone). But I’m still NOWHERE near where I was before 2016, certainly not even close to what I might have been able to do now if the virus hadn’t happened. I had to switch to homeschool (away from my friends, though better for my physical and mental health) for 10th-12th grade. Last summer, I rode a bike for the first time since 2016, and I was still in pain afterwards. I’m finally at a place where I can start doing the things I used to be able to do or have missed out on (ex: making my own lunch, learning to drive, going to college), but it’s a very delicate balance. I’m at a place where some of these things are finally in sight (I won’t say in reach yet), and it’s frustrating to desperately want to do them and know I’m so close to being able to, but I still have to be really careful.

Because of my constellation of conditions, it has been incredibly difficult to improve my health. For example: one of the best ways to treat POTS is by exercising, but exercising also unfortunately triggers CFS/ME flare ups (due to post-exertional malaise), which in turn triggers chronic pain, etc. The worst part is that it’s nearly impossible to tell when you’ve overdone it in the moment, which means that after doing more rigorous exercise, I have to make sure I don’t schedule anything for the next 2-3 days in case of a flare up. I know I’m not the only one with complicated, contradictory, incredibly difficult co-morbidities, which is one reason why it takes so long to even start healing post-virus.

I’m upset that there are SO MANY people with long-covid that are receiving the same treatment myself and others have received in terms of our post-viral illnesses. I was hopeful that, even though the last thing I wanted was more people having to go through what I’ve been going through for 6 years, this rise in post-viral cases would have pushed more research into why it happens and how to cure (or at least better treat) the most common disabilities/conditions that it results in. 

Instead, like other post-viral illnesses, we’ve continued to see small, underfunded groups research the resulting individual conditions (CFS/ME, POTS, etc) without the funding to come together to research the co-morbidities as a whole, while the majority of the population (including medical professionals, news sources, the general population, etc) at best completely ignore and at worst utterly deny the existence of long-covid.

And I’m so tired.

#covid #covid 19 #long covid #post-viral illness #disability #actually disabled #cfs/me #pots #celiac disease #fibromyalgia #chronic fatigue syndrome #chronic fatigue #myalgic encephalomyelitis #celiac #coeliac #coeliac disease #postural orthostatic tachycardia syndrome #I want to say I'm surprised but disabled people have been ignored basically forever #my sister also has celiac & cfs/me because of long flu #vent post #long post #I've been saying it for 2 years at this point. the reason covid will never go away is not because it's some super virus it's because people #don't take it seriously and don't take precautions. there have been people who have never taken it seriously but now there's people #who acknowledge covid exists & used to take precautions but have become so ''tired'' of it that they just don't care anymore #AND THAT'S WHY IT WON'T GO AWAY #because we couldn't all just hunker down for like 1-2 months at the beginning of all of this and people won't wear masks ever/anymore #guess what? I'm tired of covid too! I'm tired of living in fear of catching it and setting myself back YEARS or my sister or grandmom #yes I'm tired of wearing masks. but am I going to stop wearing masks or taking precautions? NO #because if I do then I put myself and my family at risk #the numbers are going back up again and for the most part besides the disabled community and their loved ones NO ONE IS PAYING ATTENTION

[myalgicencephalomyelitiscfstom]

Matthew Dalby @MatthewJDalby : How it feels sometimes. https://twitter.com/matthewjdalby/status/1581323340496523264

#long covid #myalgic encephalomyelitis #chronic fatigue syndrome #me cfs #post viral illness