#Chronic fatigue syndrome awareness day

[belog-grada-crna-princeza]

S obzirom da se 12. maja obeležava Svetski dan svesti o Sindromu hroničnog umora stavljam u nastavku spisak mogućih simptoma.

Sindrom hroničnog umora ili mijalgični encefalomijelitis je neuroimunološko oboljenje koje se javlja najčešće kod mladih osoba i češći je kod žena.

Uzrok je najčešće neka virusna ili bakterijska infekcija, može se javiti i u sklopu lajmske bolesti, nakon porođaja, nakon povreda glave i vrata ili nakon težih trauma. Okidač je uglavnom stres. Lek zvanično ne postoji, ali je terapija usmerena na poboljšanje simptoma i kvaliteta života.

Smatra se da do 1/3 ljudi nakon preležanog C0V1DA ulazi u ovo stanje, tako da je ova bolest nakon pandemije postala veoma česta i globalno se sada sprovode ozbiljna istraživanja o uzrocima i mogućim terapijama. Uprkos svemu tome, mnogi lekari i dalje nisu upoznati sa dijagnozom i greškom simptome pripisuju psihičkim bolestima, čime se nanosi ozbiljna šteta obolelima i dolazi do pogoršanja. Depresija i anksioznost jesu česti komorbiditeti, ali se javljaju kao sekundarni odnosno u sklopu sindroma, a ne nezavisno od njega. Bolest je ozbiljna, u najtežim slučajevima vodi u invaliditet, a s obzirom da je multisistemska i da zahvata celo telo mogu se kao posledica javiti i druge životno ugrožavajuće komplikacije kao što su miokarditis, oboljenja jetre, pankreasa i slično. Može izazvati i druga autoimuna oboljenja poput multiple skleroze, dijabetesa, lupusa itd jer je imuni sistem u disbalansu.

Ako se prepoznajete u ovim simptomima i oni vam traju duže od 6 meseci, a po nekim novijim kriterijumima je dovoljno i da traju 3 meseca, kod dece i 1.5 mesec, važno je što pre reagovati jer su šanse za izlečenje bolje ukoliko se ranije krene sa lečenjem.

U Srbiji i regionu se jedini ovim dijagnozama bavi profesor doktor Branislav Milovanović koji državno radi na Institutu za kardiovaskularne bolesti Dedinje, a privatno radi u okviru ordinacije Neurokard na Novom Beogradu. Ja mogu da kažem da je mene bukvalno spasio i da ću mu biti večito zahvalna jer je ne samo vrhunski stručnjak i izuzetno posvećen lekar, već je pre svega čovek <3

[mandana-the-service-pup]

Sometimes when my low blood pressure or low heart rate is flaring up I get this overwhelming urge to go on a ridiculous adventure.

Like I’m barely able to walk and yet it sounds like the most wonderful thing in the world to cook a feast from scratch, drive an hour to the aquarium or volunteer at an animal shelter for a day. Of course I’m not able to do any of this but it’s tricked me in the past and I’ve ended up in some sticky situations. Now I’m able to recognize when it happens by writing it out or texting Hubbins about it bc it really does sound absurd given my current state. Now when I get the sudden urge to do something that is a lot more intensive than my regular activities I immediately “hit the breaks” and evaluate why I feel that way (and it’s never bc I’m actually feeling better). I think my brain is just desperate for a dopamine hit when it’s not getting enough blood flow.

[cosmereplay]

May 12th is Myalgic Encephalomyelitis Awareness Day. It's an illness I have lived with the majority of my life even though I didn't always have a name for my experience. It involves every single bodily system, especially the central nervous system. It causes debilitating fatigue. It can make it difficult to sit and stand, let alone walk. All medical tests come back normal, making it difficult to identify. There is no cure. It's often a post-viral illness, and many people with long COVID end up with an ME diagnosis.

It's not just a long list of symptoms, it forces you to change the way you live at a fundamental level. It makes you feel parched of life, then forces you to sip when all you want to do is drink deeply.

Want to learn more about M.E.? Check out the World ME Alliance.

If any of this sounds familiar to you or a loved one and you have any questions, please send me a DM! I'm happy to share my knowledge and experience.

[faiirygrahamdevanily]

🩵severe mecfs awareness day 08/08

🩵brilliant in depth study giving insight on the traumatizing experience of being long-term bedridden during childhood & adolescence

🩵in depth study about the experience of loss, grief, stigma, and trauma in severe mecfs sufferers

🩵Here's amazing video content & written information

🩵Severe mecfs is an indescribably cruel disease confining people to their bed with unbearable symptoms. They're suffering in silence and isolated from the world. Unable to tolerate light, sound, human presence or any other sensory stimulation for most or all their time.

🩵It's when living becomes incompatible with the very little existence you have left. It's a chronic hell every single second of your time for years & decades ongoing.

🩵It's pure solitary confinement except for the few rare minutes per day you can eventually communicate with your caretaker. Additionally you might be able to use your phone sporadically to be a part of the world, at least digitally.

🩵It's the psychlogical & physical horrors inflicted on patients who endured graded exercise therapy or any other mecfs typical medical malpractice/neglect.

🩵There is almost zero research, zero treatment & little to no support. Mecfs is among the greatest medical scandals of the 21st century affecting a prevalence of 1.3% of adults (statistic from 2021-2022). That means 1 out of 100 people endures mecfs, 25% of them fall into the homebound/bedridden category.

🩵You may never heard of mecfs BUT you most certainly know someone with mecfs, they just slowly faded out of society/everyday life getting homebound and/or bedbound before you could make out why.

🩵Here's a perfect description of the inhumane small amount of living possible especially in the very & extremely severe stages:

🩵My heart carries deep solidarity for severe mecfs sufferers and their precious caretakers.

🩵THANK YOU for reading! Reblogs to spread awareness are appreciated <3

[violet-phoenix-nebula]

[karistina]

I wrote this post in 2022, but it's still very relevant. In fact, I struggle each year to compose things on the days of the year dedicated to my various illnesses and disabilities, so I scheduled this post to go live today all the way back in December 2022.

Severe ME/CFS is a debilitating chronic illness, often with post-viral onset. Some of you reading this may be Long COVID patients who meet the diagnostic criteria for ME/CFS.

[creative-caramel-coffee]

Off Day Or Day Off

Summary: Reader has a bad day due to a chronic illness they struggle with (POTS). Luckily Lizzie and Scarlett look after her.

Tw: headache, mild pots, exhaustion / fatigue, pain medicine, mentions of passing out

Words: 2129

A/n sorry for such a long absence I got diagnosed with POTS so I have been in and out of the hospital for appointments for the past few weeks. So, this fic is kinda just me projecting. Also, POTS stands for Postural Orthostatic Tachycardia Syndrome (for those who don’t know). Let me know if you want a part 2.

You knew today was going to be hard when you opened your eyes to see your alarm had already been going off for a good half hour.

Whilst not something that was unusual for you, it did pose some insight into how the rest of the day may go. Taking a deep breath, you gathered the strength to sit up, still feeling exhausted to your bones and wanting nothing more than to lay back down and keep sleeping.

Reaching out to smack the alarm in order to finally get it to shut up, it took a few tries to finally hit the button.

You were tired despite having slept over the recommended eight hours. You were tired when you woke up and you had no doubt you would be tired when you went to sleep.

Swinging your legs over the edge of the bed you braced yourself to stand up. Once on your feet you stayed upright for a good half a second before sitting back down hard.

Yep, today was an off day.

Trying again you managed to stick the landing this time, but still had to pause to wait for the patches in your vision to clear up first before doing anything.

You were vaguely aware of a dull ache in your temples and a general feeling of malaise and fatigue across your whole body.

You leant against the wall of your bedroom while pulling on some fresh pant and swapping out your pyjama shirt for a clean and presentable top.

You fought to stay upright while hopping around to stick the socks over your cold feet.

Throwing your notebook and pencil case into your backpack before pulling your laptop off the charge you added it to your bag and slung it over your shoulder, not bothering to do up the zip just yet.

Scanning the room your eyes caught on the small medical pouch were you had left it the day before. Groaning you circled back to grab it and triple check it was stocked with extra electrolyte packets before tossing it into your already full bag.

Your footsteps were heavy on the stairs as you plodded down to the kitchen, the voices of your little sister and mother only seeming to aggravate your growing headache.

You gripped the railing as you descended the stairs just in case your fatigue flared anymore than it already had.

As you shuffled into the kitchen you distantly listened to your mum wish you a good morning. Feeling tired and slightly annoyed at the whole situation you mumbled something incoherent back to her.

Scarlett had been your mother for almost ten years now after the adoption had gone through. You had met on the set for one of her earlier marvel films and due to your less-than-ideal situation and close bond with the actress she had adopted you.

It hadn’t been until a few months into living with her that she begun to take notice of your fatigue and various other issues. She had been with you every step of the process to get diagnosed and despite your fears she had stayed by your side.

You had been managing your tachycardia for a long time now and the symptoms of POTS weren’t as intense as they once were. However, from time to time you still had flare up which caused you a lot of heart ache and suffering.

As you slid into your place at the kitchen table Scarlett set down a plate of bacon and toast for you whilst she continued listening to the constant chatter stemming from your younger sister.

Scarlett nodded along with Rose’s story as she observed you closely. She had noted something was off almost straight away and knew you were doing your best to keep up a front.

It was Scarlett’s day off and as such she was tasked with taking Rose to school as Colin had headed into work early for a meeting with the writers.

You weren’t too interested in the food your mother had given you. Despite loving bacon and usually chomping it down with gusto you felt gross and tired.

Scarlett took note of your slow pace and droopy eyes as she took roses dishes back to the sink and loaded them into the dishwasher.

Scarlett had been trying to help you get better at advocating for yourself by simply making you ask for her help. She hoped it would help you speak up for yourself more now that you had more recognised needs. However, she also knew when to step in and simply help if you didn’t ask first.

She frowned at the sight of your backpack slung over the back of the chair knowing full well she didn’t want you going to uni if you were unwell.

As you continued to poke at your food with a fork and a bored expression that barely masked the exhaustion Scarlett sent rose to get dressed.

“Alright munchkin, what’s going on?” Scarlett said sitting down next to you.

“‘M fine mum. Just tired, I didn’t sleep well.” You grumbled still mining away at the edge of the slightly burnt toast with your fork.

Scarlett frowned as she knew you had been asleep before ten after she had poked her head in at around nine fifty to see if you were up.

“In that case maybe you should stay home today and get some rest sweetheart.” Scarlett said softly.

“No. No, I’m ok.” You said shaking your head which wasn’t a great idea as the patches reappeared in your vision.

“Alright.” Scarlett said admitting defeat for now. “I have to take rose to school; do you need a lift to uni?” She asked and you nodded pushing away the full plate of food. “Ok then come get your shoes on.”

You nodded again and stood. Just as she had expected Scarlett watched as you swayed on your feet slightly, blinking rapidly to try and clear your vision as your hand blindly reached for the table to provide the support you needed dot stay upright.

“Alright. No.” Scarlett said. “Definitely not. You’re staying here sweet girl.”

“But i’m-“ you begun only to be cut off.

“If the next words out of your mouth are “I’m fine.” I’ll make you take the whole week off.” Scarlett said and your lips snapped shut. “Go make yourself comfortable on the couch, I’ll have lizzie come stay with you while I’m out. She has the day off too and before you start, I’m sure she would like to spend the time with you.” Scarlett said before you could protest hindering the younger actresses schedule with your change of plans.

Before you could protest Scarlett gave you a look that kept the words in your throat from leaving.

“You’re not a problem y/n. Lizzie loves to spend time with you, and it makes her feel better to be able to help you out. Plus, I don’t want to leave you here alone in case you need something or pass out.” She said sternly but kindly.

“But I haven’t passed out before.” You grumbled.

“There’s a first time for everything.” Scarlett said. “Now go get comfy while I call Lizzie.” She said pressing a kiss to your head and giving you a light shove in the direction of the living room.

As you settled into a small nest on the couch you begun scrolling through Disney plus before settling on something to watch. You heard Scarlett talking on the phone in the kitchen before she appeared and handed you a water bottle which no doubt was filled with electrolytes. She spoke to Lizzie for a bit longer before coming back once the call was done.

“Drink.” She instructed, nodding to the bottle in your lap. “Lizzie will be over soon. I have to take rose in and then we can have a movie day and see if Lizzie wants to join us.”

“Ok.” You mumbled feeling bad for ruining everyone’s plans.

“None of that. We love you and we would rather spend the day making you feel better than knowing you’re not ok and doing what we planned.” Scarlett said as she picked up roses backpack and grabbed her trainers from the doorway.

Rose came and hugged you goodbye before continuing her endless chatter about something or other as she and Scarlett disappeared out the doorway. Scarlett blowing you a kiss as she left.

Snuggling down into the blankets you felt your eyelids droop as the show played on in the background.

What couldn’t have been more than five minutes later the doorbell rang before the door opened. You knew Lizzie had a a key, but she always rung the doorbell before she let herself in just to let you know it was her.

You heard the door shut and the sound of her taking off her shoes before she came upstairs.

“Y/n?” She called out as she walked down the hallway.

“In here.” You said barely shouting.

A moment later Lizzie entered the room, her face looking a little sad at the sight of you all bundled up and sleepy, your arms wrapped around your water bottle as your eyes drifted shut.

“Hiii.” You mumbled quietly.

“Hi sweet girl. Oh, look at you, it’s not a good day, is it?” She asked as she took the seat beside you on the couch.

“No.” You huffed as you shuffled over into her side.

Lizzie’s hands went straight to your hair as she brushed her fingers through it. She guided your head to her lap and gently began braining locks of your hair. The feeling of her fingers on your scalp relaxed you as your eyes fluttered shut.

“Have some more to drink first baby, then you can have a nap, okay?” She said helping you sit up and sip some of the electrolyte drink before guiding you back to her lap as her hands took their place back in your hair.

It didn’t take long for you to fall asleep again.

The next time you woke up Lizzie’s hand was still gently massaging your head which was helping with the now whopping headache you had. You shifted slightly prompting Lizzie to look down from the show she had put on and see you were awake.

“Hi sweetheart, how are we feeling love?” She asked softly.

“Headache, tired and lousy.” You mumbled turning your face into her stomach making her chuckle softly at your cuteness.

“That’s no good.” She said frowning now she registered your words. “Want me to get your mum to bring some Panadol and a snack?” She asked and you nodded into her stomach.

Lizzie gently reached down and placed her hands over your ears to shield you from the noise as she began calling out to Scarlett who you hadn’t noticed return.

“Scar car you bring y/n/n some Panadol and a snack!” She called and you faintly heard your mum’s response before Lizzie was prompting you to drink some more of the electrolyte drink in your water bottle.

“Sorry I know this wasn’t what you two wanted to do on ur day off” you said to both actresses when Scarlett came in with some cupcakes, she and rose had baked the day before and a strip of Panadol.

“Honey…” Lizzie said looking sad. “I’ll always be here when you need me.” She said softly.

“Yeah, I can’t get rid of you.” Scarlett joked making all three of you laugh.

When you winced at the noise Scarlett went straight to mum mode as she popped out two of the tablets and put them in your hand before nodding to the water bottle.

“Alright, what are we watching?” Scarlett asked situating herself on your other side and pulling your legs into her lap, so you were laid across the two of them.

“Whatever y/n/n wants.” Lizzie said chucking the remote to you.

“I’m thinking marvel.” You grinned making both women groan in protest.

You put on age of ultron and barely twenty minutes in Lizzie’s gentle head scratches had lulled you back into the arms of sleep.

POTS was hard to live with but with all the people in your life supporting you it was bearable.

Part 2

@barbarasstar @charlie56

[myalgicencephalomyelitiscfstom]

Another important & incisive blog from ME/CFS Skeptic explaining how all the research studies have found no greater variations in activity patterns in people with ME/CFS versus controls

Summary thread here:

Note: the author is a patient. He is well aware of the existence of postexertional malaise and that pacing is important. ---

"Several studies used accelerometers – small, wearable devices that measure movement and activity – to examine the physical activity patterns of ME/CFS patients. None found evidence of a boom & bust cycle." ---

“The boom and bust theory risks blaming patients if they have an activity peak that causes a crash. There are many cases where this is unavoidable such as medical visits or to maintain social contact. Post-exertional malaise is part of living with ME/CFS, no matter how hard one paces.”

---

This is how one person elsewhere explained what this is about:

“It’s not what the term ‘boom’ suggests.

This language is routinely used to frame the behaviour of PwME in such a way as to make it seem like we’re out jogging (or similar) and if only we’d draw our horns in a bit we could then find a ‘baseline’ and gradually do just a little a bit more every day (as if anyone’s life is that predictable in the first place, by the way), until we’re magically functioning at near normal.”

It’s a complete fallacy.”

[7ndipity]

Their S/o has ME

Ot7 x Reader

Summary: How they would react/handle their S/o having ME(aka chronic fatigue syndrome)

Warnings: not proofread

A/N: Thanks to @a-gayish-unicorn for requesting this! This is based solely on my own knowledge, experience, and research, so I’m sorry if it doesn’t fit with everyone's experiences.

Masterlist

°•°•°•°•°•°•°•°•°•°•°•°•°•°•°•°•°•°•°•°•°•

Jin: As I’ve said before, he’s really great at taking your mind off your frustrations during bad flare-ups or crashes, claiming that it just gives y’all an excuse to have a movie or gaming date at home, which are honestly his favorite. He always makes sure you know he’s not dismissing your condition in the slightest tho, and that he doesn’t mind helping out extra during relapses when it’s harder for you to do things on your own.

Yoongi: He would try to find a balance with helping you out with things where he can, while not making it seem like he’s trying to coddle or baby you. He just hates seeing you struggle and wants to do what he can to make you feel better. Doesn’t mind having to repeat things sometimes or sending you reminders when you’re having trouble with memory and concentration. A+ nap buddy, would highly recommend.

Hobi: He’s such a sweetheart, he can’t help but worry about you sometimes, wanting to make sure you’re okay. Tries to make sure you pace yourself and take plenty of breaks so that you don’t overextend or exhaust yourself when you’re doing things on your better days, as he knows is your instinct sometimes, in order to try and compensate for your worse days. Anything he can do to help you, just say the word and he is on it.

Namjoon: Super patient and content to do things at your pace, understanding when you need time to rest or recover from little things. I feel like you make him a lot more aware of the effort that actually goes into even the simplest things, appreciating and celebrating your good days when you can do things more easily. Will unjokingly offer to carry you literally everywhere to help save your energy.

Jimin: He’s always super gentle with you on bad days, trying to help you with your daily tasks without making a big deal about it, bc cooking dinner together is more fun anyway, even if it’s just instant ramen. I could see him suggesting y’all try something like yoga or massage therapy together, since it’s supposed to help with some pain and stiffness without exhausting you like regular exercises. Your comfort is always his top priority.

Taehyung: He’s a great shoulder to cry on when you’re feeling really burned-out or depressed, listening to your feelings without judgment or trying to fix the situation for you. Loves leaving cute little notes for you to help you remember things. Makes days when you’re crashing or hurting a lot more enjoyable, setting up camp on your couch or bed and binging movies or dramas with you.

Jungkook: He worries about you a lot, but tries not to let on or baby you. Tries to help in subtle ways, like letting you lean on him when you start feeling tired, offering massages when you’re sore, making you tea, etc. He even invested in blackout curtains to help on days when your headaches or light sensitivity is really bad. He just wants to show you that you can rely on him for whatever you need.

Taglist: @sopebubbles-replies @btsw1fe @this-must-be-my-tardis @whitefoxgirl @bethanysnow @coffeedepressionsoup @main-bangtansmauyeondan @feminympho @a-gayish-unicorn @dfqcsqueen @mother2monsters @comingupwithacoolnameishard @captainorangegoose @k4ngelz

[massyworld]

Governments are failing us. Worldwide.

Most people have NO CLUE about the implications of getting covid multiple times. It doesn't matter if you got a mild infection. There's even the case of getting asymptomatic infections as your body silently suffers the accumulating consequences. Governments are not doing their part to mandate public health departments to spread information, AND so many more people are distrustworthy of sources of information that used to be well-trusted for YEARS! We need a total communication overhaul.

The fact is that covid causes organ damage and affects every part of your body. You're rolling the dice each time you catch it. And since there aren't accurate tests available publicly anymore (possibly region-dependent), you can't tell if you caught a regular cold, RSV, influenza, or covid. Covid having the highest transmission should be a clue as to what it usually is that you're catching, though. It's better to be safe than sorry, and to mask in public indoor settings and avoid super crowded places.

I don't think people know what long covid can entail, and that's frightening. IT'S frightening. If you get ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome), your body literally progressively loses the ability to bounce back from any exertion. Mitochondrial dysfunction. If you've heard the popular quote "Mitochondria is the powerhouse of the cell", well, what happens when the powerhouse shuts down? You gradually become out of breath from the simplest things. If not out of breath, just total bodily fatigue, as if you did so much more than you just did. I've seen a woman say that 1 single shower knocks her out for 3 days. By the way, this isn't unheard of for SARS viruses. SARS-COV-1 from 2002-2004 caused ME/CFS in people but not as many people heard about it. More and more are getting it every day right now, and their voices are crying out in online spheres.

We need more awareness for this disabling virus that world leaders are subjecting us to. Full stop.

[metalheadsforblacklivesmatter]

I DIDN'T KNOW BUT HAPPY NATIONAL MIGRAINE AWARENESS MONTH.

Things that I learned since having migraines.

They can change. You can go years without migraines, but then suddenly get them again.

Symptoms and triggers can change. You may think you don't got it that bad because you don't have the worst of the symptoms but then one day you suddenly got vertigo and vomiting.

Migraines impact the trigeminal nerve which is the same nerve impacted my TMJ pain, sinus headaches, trigeminal neuralgia, and cluster headaches. It's the biggest nerve in the face so it's pretty common to have multiple of these conditions at once.

Migraines can be triggered my barometric pressure shifts, flashing lights, sounds, and smells.

You can have migraines without aura or visual disturbances. These are harder to treat because most migraine medications require you to take them during the aura phase.

You can have what's called an "abdominal migraine" which is characterized my extreme stomach pain. This usually impacts adolescents.

You can have what's called a "silent migraine" which is characterized as migraines without the headache. In fact headache isn't even the most common migraine symptom based on a poll I've done.

Migraines can be highly tied into your allergies. Not just in the fact that sinus headaches and migraines trip the same nerve, but in the fact that your allergies can be a migraine trigger.

Migraines can make you more susceptible to alcohol especially when you're dealing with migraines triggers frequently.

Fluorescent lights are actually very bad for people with migraines because it's essentially flashing so fast you can't see it with the human eye (but trust me your migraines will know it's there).

It's actually very common for people with migraines to have heightened senses of smell, higher sensitivity to lights/sounds, etc. Some people have even noted that people with certain medical conditions have different smells.

Chronic migrains are obviously a disability but episodic migraines can be considered a dynamic disability (a disability where your needs fluctuate)

Migraine preventatives are different from migraine abortives. Doctors will usually only prescribe preventatives if you have chronic migraines or have a certain number of migraines a month.

15 migraine days a month is the number you're looking for to be considered chronic.

It's actually pretty common to be craving salt or carbs after a migraine. And listening to those cravings can actually reduce postdrome symptoms

Migraines come in 4 phases. Prodrome (irritability, fatigue, etc before the migraine), aura (visual disturbances), migraine, and postdrome (fatigue, dizziness, etc after the migraine).

The most common migraine meds are called triptans and shouldn't be taken with antidepressants because it can cause serotonin overdose syndrome.

Migraine aura isn't limited to visual disturbances. It can include phantom taste and smell (smelling or tasting things that aren't there)

People that have migraines are more likely to deal with heat intolerance

A lot of the "it's a migraine if you experience pain on this side of the head" is complete garbage. Migraines are characterized by a complex set of neurological symptoms of which doesn't always include headaches.

-fae

[yellow-dress-basil]

I see all these joke posts about Dysautonomia Awareness month, which I think is coming up, like “I’m very aware of Dysautonomia”

And I 100% get the joke and think its actually super funny - and this is in no way trying to dunk on anyone

I WAS UNAWARE OF DYSAUTONOMIA

And when someone finally told me it existed 2 days ago, I realized all the different medical issues I’ve been going to doctors for and getting tests for for YEARS (literally I’m 28 and this is since I was 16) may actually be all connected and it might not be just in my head or just that I’m lazy and don’t like to stand or move.

Like my gastroparesis, GERD, Cyclic vomiting syndrome, migraines, dizziness, chronic fatigue, hormone imbalances, etc etc etc might all be one, explainable phenomena??

Like every random illness and new symptom that has popped up since I was a child might be real and connected?

So jokes aside - awareness campaigns are important!!!

[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

[sir--crow]

I wanna write SO BADLY these days but I cant

I've been craving my old routine of working out, daydreaming, and writing out my silly thoughts

but I can't right now

I know I'll get back to it one day but right now I'm just feeling the frustration of my chronic illness and disability.

*angry crow*

if u wanna read more of an explanation I left it under the cut! I guess this is sort of my update/explanation for why I've been gone for awhile

I wanna keep this brief (I'm tired), but I also wanna spread some awareness on ME/CFS since it's what I'm dealing with.

I got COVID (yes it's still around and no the pandemic is not over) back in October, and after feeling horrible for weeks thereafter I was diagnosed with Long COVID... and then my doctor also diagnosed me with ME/CFS. It was a lot to take in at the moment, and ever since that appointment I've gotten worse.

ME/CFS is also known as Chronic Fatigue Syndrome. I like to also call it the Big Tired. but it's not just tiredness, it's straight up soul crushing fatigue, pain, brain fog, memory issues, dizziness, vertigo, weakness, and so much more. Post Exertional Malaise (PEM) is a main factor of ME/CFS that has crushed my being. to keep it brief, it basically makes u feel sick and get worse after any exertion of energy whatsoever. this includes physical, mental, and emotional. I once laughed too hard and felt sick hours later.

I find that these days I'm too tired to daydream now, which really makes me sad. the other day I turned on some music and started to daydream, and it got pretty intense (fight scene in my brain was going hard) and then I felt ill. I was out of breath and had to sit down because my heart started to race too fast. I can't fucking daydream like I used to and I'm so sad.

I know that I'm just having a bad flare up, but like I said before I'm just feeling frustrated and wanted to take this moment to vent/spread awareness on ME/CFS.

I'm still in the process of figuring everything out and I'm very lucky and privileged to have an amazing support system through my mom. I know that I'll daydream and write soon, since I'm stubborn, but yeah brain fog and fatigue suuuuck.

if u wanna learn more about ME/CFS I highly recommend researching it since it's a lot more common than you might think. also just a reminder to stay safe, wear a mask, and take care of yourself <33

[aitadjcrazytimes]

Hi, I saw your tags:

I was wondering. Um. Would you be comfortable sharing what other symptoms you have?

I've had memory problems for years but every time I look them up I just get stuff like alzheimers and car crashes and stuff, which doesnt apply. Idk

I was wondering if this might be me also. I'll talk to a doctor, of course, but. Just wondering what the general vibe is

Sure! Though, be aware, if you Can get evaluated for your symptoms you probably should, at least to make sure it isn't degenerative.

Via-a-vis the ABI (That's Acquired Brain Injury), part of the reason it took so long to diagnose is because

I already have a different diagnosis of cEDS (Classical Ehlers Danlos Syndrome) that explained several of my other symptoms

I have GAD and PTSD due to living in a very abusive and dangerous environment up until about 5 months ago, and

At least two of my family members are autistic, so it was just kind of vaguely assumed that any weirdness regarding my sensory processing and so on was because of that.

So! To summarize (and I put this below a cut because it gets Long).

Chiari Malformation is when you have a defect in the base of your skull that puts pressure on your cerebellum, causing part of it to go into your spinal column. Many people with this condition don't experience any symptoms, but that is not always the case, and even with no symptoms, it does place you at a much higher risk for a brain injury. With a Chiari Malformation, even a mild concussion can cause serious damage.

I have had several concussions, with one of them knocking me out for several minutes when I was very young. So. Here we are.

Regarding treatments for Chiari, most of what can be done is simply treating the symptoms. Unless there is concern about the condition getting worse (more memory loss, paralysis, etc.), patients will likely be referred elsewhere to discuss pain management, because from my understanding, the only effective treatment for Chiari is a decompression surgery, which will remove part of your skull to take pressure off the brain. It's not terribly risky as brain surgeries go, but the best brain surgery is, of course, no brain surgery.

Re my Physical symptoms:

I get headaches very frequently, and often very severely. They have been categorized as migraines in the past, because they come with severe light and sound sensitivity, and they tend to knock me out for hours. That said, they don't meet all the criteria for a migraine, including having no aura to speak of. They are often triggered by strain and jostling my head--by coughing, sneezing, vomiting, jumping, or anything that would cause motion sickness.

I have poor balance. I have found that walking with a cane helps, but physical therapy doesn't do all that much (because it's in my brain and not my muscles).

I also struggle with chronic fatigue. Getting out of bed is a real struggle most days, as is getting anything done outside of simply going to work and then coming home--although I recently went on an antidepressant, which has helped a bit.

Insomnia! I have trouble sleeping. It comes and goes, sometimes I get several days worth of restful sleep, but sometimes I get only a few hours worth of sleep over the course of a week.

Shooting and burning pain in back of skull, neck, spine, shoulders, and chest. Be careful with this one, because this can also be a result of a heart issue. That said, I've had my heart checked out, and that's all good, which is why they checked the brain in the first place.

As for my cognitive symptoms, it's a bit fuzzier, because like I said before, I have PTSD, I have the ABI, I have GAD, several of my family members are somewhere on the autism spectrum, and now my therapist is also having me evaluated for OSDD. So, your mileage may vary. But essentially:

Memory loss. Some of it is retrograde, and I have found that I'll forget significant events and people. Most of it is anterograde, or short term--so, forgetting what a conversation is about while I'm in the middle of a sentence, and either having to improvise and try to make a guess as to what I was talking about, or having to have my conversation partner walk back what we were talking about to explain what we were doing. I have to have a very detailed and elaborate task tracker at work in order to stay on top of things, or I would simply forget it all. I also have the experience of feeling like all of my memories are stories that were told to me. So, I rarely experience a memory as a thing that happened to me, complete with sights and sounds and feelings and sensations and so on, but more like a story that someone told to me once. So, a vague recollection of events and the order in which they happened. This makes it difficult to differentiate between my own memories and stories that other people have told me. It has happened a few times that I have told a story of something that happened to me, only to find out that it actually happened to the person I was talking to instead, and I just got confused.

I'm not sure what to call this one, but I get EXTREMELY easily distracted from processing audio, especially in an environment with more than one thing happening. If I am having a verbal conversation with someone in a restaurant, and someone comes and sits at the table next to us and starts talking, I become almost incapable of conversation. If I'm talking to someone and someone turns on the TV in the next room, I become almost incapable of conversation. If music is playing, I lose track of the conversation. I forget everything I was saying. I won't be able to understand what other people are saying. Spending time in loud, busy, or crowded environments is not that distressing by itself, but I will not be able to hold a conversation.

Aphasia and Verbal Processing. It is incredibly difficult for me to put words together in a way that is coherent. It is significantly easier through writing, because I can look things up and take my time with it. But in vocal conversation, I will frequently have verbal shutdowns where I cannot find a word, and all of my language processing shuts down while I try to comprehend what I was talking about. This often leads to...

Fuzziness/Blurriness. I typically call this "going fuzzy". Generally it involves a verbal shutdown to an extent, where my brain has reached capacity with processing information, and is deciding to simply wipe everything and start over. Think of it like restarting a really old computer. Sometimes it doesn't take too terribly long--a few moments. Sometimes it takes more than half an hour. It depends. This is often accompanied by...

The Buzzing™--It happens for me at the base of the skull, where the injury is. It feels like a tuning fork fused to the inside of my skull. It is completely maddening. My ears ring, and it sounds like a high pitched whining noise. I become very on edge, it's incredibly anxiety inducing, and very overwhelming. I don't know if this is a common symptom you will be able to find under brain injuries, but it's Extremely not fun! I have found that it can be lessened somewhat with massaging the area.

The Voices™: I have heard voices ever since I was a kid. (Schizophrenia has already been ruled out.) Sometimes, it Is an actual auditory hallucination. I recently had an experience where I was grocery shopping and kept flinching because it sounded like someone was shouting my name directly into my ear. Other times, I've heard people whispering or knocking on my walls. These typically occur during or following a stressful situation. HOWEVER, I also experience The Voices™ in my daily life outside of stressful situations. In these situations, it is never auditory, more just a thing that occurs in my own head. I have, in the past, had the experience of talking more or less constantly to one or several distinct people in my head. Nowadays, it feels more like experiencing multiple trains of thought or multiple sets of emotions which feel distinct from "mine". Or feeling like a background voice in my head while someone else does things for me.

Per my therapist, I have recently begun categorizing them as different people to see if that helps. And it does sometimes! And sometimes it does not. It is a process. But that's where I am with that.

There's more to it, but I don't really have the capacity to talk about it much more than I have at the moment.

If you want to see what my experience with this is like... I mean. I did write an entire fanfiction about a character with several of my symptoms recently. You likely won't have the context for what is going on re the character and the situation unless you are into Red vs. Blue, but just in case it helps to see a recounting of it, here:

The Fanfiction That Helped Me Realize I Had Brain Damage™. Have fun!

[chronically-persistent]

ME/CFS AWARENESS MONTH

Hello and happy May! As of today, it's officially ME/CFS Awareness Month, so I have compiled some resources to spread in the hopes of informing and bringing attention to this disease.

What is ME/CFS?

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a complex and debilitating systemic disease that varies in severity and presentation between patients. Some common symptoms are fatigue, sleep problems, widespread pain, difficulties in thinking and memory, and PEM. PEM (post-exertional malaise) is a hallmark of this illness, defined as a worsening of symptoms after mental, physical or emotional exertion that can last from days to even weeks.

Some other symptoms include: gastrointestinal problems, dizziness, difficulty concentrating, changes in mood, headaches, sore throat, skin rashes, musculoskeletal pain and heart palpitations. Science is still unsure how ME/CFS affects the body, but in many patients it appears after an infection with a virus.

There are no tests for ME/CFS as of May 2024, and the only method of diagnosis is a process of exclusion. As such, ME/CFS is critically underdiagnosed and many suffer without knowing. People with this disease are often recipients of medical gas lighting and negligence, with the average diagnosis taking around 1-5 years.

There is no cure, and there are limited treatments, most aiming to address individuals symptoms or comorbidities. Despite the misinformation still spread around, exercise is not a recommended treatment and can cause great harm to ME/CFS patients.

How Can You Help?

There are many organizations working toward awareness and quality of life for ME/CFS patients, and I'll list some of them below. This is not an exhaustive list, but be aware that there are many web sites that spread misinformation and harmful statements: any that talk about a cure or exercise therapy are generally ones to avoid.

If you can, please take a look at the information the listed sites provide and share their knowledge in whatever ways possible. I'll also include some resources for ME/CFS patients, and I encourage allies to look as well.

I hope you have a wonderful May, and to all fellow ME/CFS sufferers, know that you are not alone. We can do this.

(Also, please let me know if there are other sites you recommend, or if there are any personal experiences you would like to share. Treat this as an open invitation to share your stories if you are comfortable.)

Links;