#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.

[i-like-rocks22]

Often I see people asking how to get diagnosed with ME so i thought I would pop some ideas below! (Disclaimer: not a medical professional, just an ME-er with about 7 years experience of the disease).

For me, diagnosis was a process of elimination. I ended up going through an allergy specialist because my insurance (UK) had no idea what specialist to refer me to.

If I was doing it now, I would seek out

Reumatology (to test for other autoimmune conditions),

neurology (to check on things like migraines and brain fog),

cardiology (for fatigue and anything like headrushes or fainting), and

endocrinology (to check hormones for any imbalances or other conditions).

ME comes along with a lot of other comorbidities. For example, I have diagnoses of ME, POTS, Vasovagal Syncope, MCAS, asthma, and an ovarian cyst. Lots of these have treatment which can help my body and take some of the strain off of it.

ME 'treatments' are few and far between but if you n know what to ask for, there is help available. I am currently on Low Dose Naltrexone (LDN) and pregnenolone. There are also a few beneficial supplements that can be taken, I've added some screenshotted info below. This was reviewed by the doctor prescribing me LDN and pregnenolone and they approved!

I'm happy to answer questions (energy permitting) so DM me, yo.

It's ME awareness day and next week is ME awareness week, so here's a post about ME that you may find interesting or helpful!

I have ME it's one of my diagnoses, and I struggle with it on the daily! I wish more people understood how my body works and feels but sometimes the best I can do is a post like this

Edit: I wrote women but I mean AFAB people!!!!!! So sorry about that guys it's a silly mistake on my part!

Anyway enjoy!

ID in Alt

[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.

[covid-safer-hotties]

Also preserved in our archive

By Nicole Karlis

A disease that's prevalent in women highlights the female sex bias in medicine

In modern-day culture, it’s common to complain about being tired. But for some people, being extremely tired is just one symptom of a disease that’s increased in awareness since the COVID-19 pandemic that can severely impact everyday activities: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Though the condition has existed for a long time, it can often manifest after a COVID infection, especially as an aspect of long COVID, in which symptoms linger for months or even years.

As research has shown, many long COVID patients either have symptoms similar to chronic fatigue syndrome or have been diagnosed with the disease. But just as long COVID remains a complex mystery, so does it’s so-called sister disease, chronic fatigue syndrome. Similarly, it’s a disease that researchers feel hasn’t been taken seriously in the scientific community. Not because it’s new, but because part of its female bias, coupled with its association with extremely debilitating fatigue, which is only one aspect of the condition. Even the term CFS can be misleading.

“The name chronic fatigue syndrome does not reflect people's symptoms as chronic fatigue is not the main feature of this disease, and for anyone to think that it is would diminish people's experiences,” Chris Ponting, a professor at the University of Edinburgh to co-lead of the DecodeME study, which is the largest ME/CFS study in the world, told Salon. “It’s also female dominant, there are five times more people within ME who are female than are male, also more people are more likely to have ME if they're older.”

That means, Ponting elaborated, that the typical ME/CFS patient is an older woman. According to the Centers for Disease Control and Prevention (CDC), having ME/CFS makes both physical and mental exertion difficult. Symptoms can include extreme fatigue, but also trouble thinking, severe tiredness and an inability to do activities, like shower or cook themselves a meal. There is no cure or treatment, and no official diagnosis process.

“Policymakers in this world are more often going to be younger males who have very little risk for this disease, and are perhaps completely unaware of the devastation that it has wrought across our population and still does through its sort of sister disease, long COVID,” Ponting said. “And without that understanding, without perhaps that personal knowledge, it flies under the radar despite affecting one in 200 people.”

One of the most peculiar aspects of chronic fatigue syndrome is its underlying biological mechanisms. In the world of health, people are frequently told that physical exercise is good. It’s an idea that has pervaded all of society around the world and for good reason. Scientific research has found that regular physical exercise reduces the risk of many types of cancer, heart disease, stroke and diabetes. But for ME/CFS patients, exercise is not usually recommended as a remedy — and can actually be harmful.

“We've been told from birth, if you're feeling out of sorts, go out outside and exercise, and we're told even in our last decades that exercise is good for us,” Ponting said. “But it is absolutely not true for this disease. It is actually reducing people's health, quality of life, and reduces their ability to move.”

As to why that’s the case, Ponting said the answer remains to be discovered, as the biological mechanisms of the disease are not entirely known. What is known, Ponting said, is that a majority of people come down with the disease after an infection. This could indicate that it’s the result of a problem with the immune system. There also appears to be a genetic component to the disease. In the DecodeME study, researchers are focused on studying the DNA of people with ME/CFS because they suspect some differences could reflect the biological causes of the disease.

Dr. Charles Shepherd, a medical advisor to the ME Association in the United Kingdom, was diagnosed with ME/CFS after he contracted chickenpox from a patient.

“I had a pretty nasty dose of chicken pox. All the sort of symptoms of chicken pox went away, but I just continued to feel unwell — not just a bit unwell, but quite unwell,” he told Salon. As a doctor, it was puzzling to him. He had debilitating fatigue that was exacerbated by physical and mental activity. Resting, he said, also didn’t help. He also had post-exertional malaise, which is a worsening of symptoms after minimal activity, which is a hallmark symptom of ME/CFS.

“It took me two years to get a diagnosis because I didn't know what was going wrong,” he said. “I wasn't taught about this illness when I was at medical school, and so again, very common still today, and I did all the all the wrong things from the point of view of management.”

Shepherd has been living with the disease for nearly 40 years. Yet he describes himself as one of the “lucky” ones who has found ways to manage his symptoms.

“The output of the prognosis is not good,” Shepherd said. “Probably only around about five to 10 percent of people make a full and sustained total recovery.”

Ponting said the fact that it occurs after an illness could mean that “the battery of the cell the mitochondrion has gone wrong in some way,” Ponting said. “But the shocking thing for me is that we don't know, and that's why we're doing the research.”

Shepherd has been able to find relief through “pacing,” which is energy and activity management. Currently, treatment usually also includes cognitive behavioral therapy to manage peoples’ symptoms. Graded exercise therapy, Ponting said, used to be recommended as part of the UK’s guidance, but isn’t anymore. The therapy included increasing a person’s level of activity, but it proved to be too harmful to people.

Through Ponting’s study, potential breakthroughs could be on the horizon.

“We'll show or shine a light down onto what exactly should be studied next,” Ponting said. “But what we're not going to do, unfortunately, is discover a drug that will help people manage their disease over the next few years.”

[caitrol]

TIPS AND TRICKS FOR hEDS AND POTS

(Hypermobile Ehlers Danlos Syndrome and Postural orthostatic tachycardia syndrome)

First some background, I am a college student living in a dorm. Had my symptoms since 16 and was officially diagnosed at 20. This is what works for me and my symptoms. I’m still learning more and more about POTS as it was kinda shoved under the rug for me.

- for low blood pressure have salty snacks. I personally hate flavored water and unflavored electrolyte water still tastes weird. I have a little snack corner with snacks and salt in case my blood pressure drops

- be a part of the disability program at your school!!! Even if you don’t need a specific accommodations join it. It helps the school and your teachers be aware. Since I’m part of my schools programs, if needed I get get a ride to my classes.

- TENS unit!!! This thing is my lifesaver when I have a dislocation. You can get some on amazon but depending on insurance, you can get one covered as well.

- eat more protein. Diet won’t cure anything but I find having more protein has really helped with my energy levels. I don’t eat much meat myself but chicken is always a good one. I also get Kodiak protein muffins (the double chocolate ones are good, rest are meh), fair life milk (more protein compared to most other brands), and fiber granola bars. I’ve found that fiber bars tend to have protein and vice versa.

- supplements!!! Most patients with EDS will have some vitamin deficiency. For me it’s B12 and D3 (which I find is most common) Talk to your doctor of course but supplements can help keep your body normalize better. 

- mobility aids!!! Always talk to a doctor or physical therapist to ensure you are using them correctly but my cane really helps on certain days. Don’t go through insurance because you can easily get a nice cane for cheap online, insurance will only cover so much use it for bigger items like a wheelchair.

- fans. I’m always overheating, I keep my room cold and have a fan going most times. I just cover myself in blankets if I’m cold. Just easier for me personally.

- compression socks! I personally don’t like most compression items as they bother me but my ankles are really unstable. I got two compression sleeves at Walmart and they help me feel more stable walking. Sole inserts as well.

- If you have a high arch get some good hiking/running shoes, I love my Hokas. Sadly they can be expensive but there’s many cheaper options available! (I’m unsure what is best for those with flat feet)

-chronic fatigue, make a schedule that can account for naps if needed. I ended up taking sleep aids and it has really helped. But even just being able to have the luxury to take a nap if needed has really been helpful

THINGS I WISH I DID FOR COLLEGE

- ask about the dorms!!! I was under the assumption everything would have an elevator and my apartment on campus does not.

- if you use a shower seat, always ask which dorm has accessible showers.

- as stated earlier sign up with the disability services right away. It only helps with finding dorm housing.

- get a single room if you can! My medical equipment and pills takes up space and it’s much easier to keep it locked and secured when alone vs with a roommate.

Feel free to share more!! There’s always room to learn and discover new things

[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!!!

[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