Thinking of 2.5 years ago, when I laced up my runners for interval training right after mild covid. Raising my HR to the max. I did that 3 days a week without problems until I suddenly collapsed and I've been bedridden ever since. I wish I'd known where I was running myself into.
Is it possible that covid lies dormant and reactivates under certain circumstances? I tested positive 3 novembers in a row since long covid, with barely leaving the house and never not masking.
Question, do you know anybody who is still covid conscious? More than 1 or 2? Even my most invested friends aren't anymore. And I don't blame them. It's hard to keep up. To me it seems like a lost battle.
A guy went to a hospital to donate healthy blood for a LC study.
'I participe because my wife has long covid', he explained at the counter.
'Well, I hope she's is quarantining and not here with you!' they replied.
Just a little example of where we are in terms of knowledge.
We talk about orthostatic intolerance like oh yeah another shitty ME symptom, but really it's quite an absurd, life altering symptom. Should be high on everyone's 'Things I never want to get' list.
Most of us say or have said (me included): 'Crashing hard today but had a lot of fun yesterday so worth it!'
Is it though? Is continuously triggering PEM by doing a 'worth it' thing really worth the long term/permanent decline? Considering what we know.
People want you to be positive so THEY can deal with YOUR illness. Most have no idea about ME pathology and how slim the chances are of a miraculeus recovery. And even if they knew they'd still expect you to vain a positive attitude. I find this quite unpleasant.
I've been sliding in and out of very severe LC/ME for 3 years now and starting to lose hope. Is there still reason to believe a cure is coming? And if so, what are those reasons? Could use a nice and firm straw to hold onto.
It would not have been such a massive effort or problem to inform people about resting after acute infection to prevent long term damage, right? small gesture, huge difference. Why wasn't it done?
#LongCovid
imagine having been bedbound with
#MECFS
for many years. No help, just gaslighting and neglect. But somehow you are still here. Then one day a pandemic hits and suddenly there are millions of people struggling with the exact same thing as you have been.
1/2
long covid is a great name and served a purpose. But it also keeps the condition vague. What conditions did you develop post covid? MCAS? Dysautonomia? HEDS? ME? We need to be examined for these conditions and treat them. 'You have long covid' is idle.
Why do I feel 100 times worse after a nap than before? Like what happend in my body while I was unconscious for 30 minutes? I would really like to know this freaks me out.
#LongCovid
Nobody will understand how ME can be so horrific and all consuming because they don't realise they have an autonomic nervous system, and thus have no idea what happens when that starts to malfunction. If only we could somehow show.
Okay - doctors can't help us.
But why do they genuinely seem to dislike us?
It's not our fault we are smarter on the subject of
#longcovid
,
#mecfs
etc.
I'm audio reading 'How to Survive a Plague' and was overjoyed when dr.Fauci entered the scene: finally someone in power to push for research funding..
Then I learned that he has also taken every opportunity to bury ME for the last 35yrs. Psycholosing it heavily. mixed emotions.
I once overheard a senior ME-er tell a newbie ME-er: 'you will lose pretty much all of your friends.' And I was like erm... of course not, bit grim there 🤨But here we are.
If I were an
#MECFS
patient from decades, I'd have a hard time with this. I hope that everyone will soon understand that
#LongCovid
is a chronic condition that results from infection and that this is absolutely nothing new!
People should realise that it is a MAJOR privilege if you're able to say things like: 'I stoped making long covid my identity'. Or: 'I felt better when I started to listened to my body'.
Fot severe cases of ME non of this is even optional.
When you have pem in your brain and you can't process anything incoming and you feel nauseated in your head and seasick at everything that moves.
What is happening in the body? Do we know? I'm out of touch with the research lately because of ☝️
I suffer from severe brain-PEM & can barely see people, let alone talk to them. The loneliness that unavoidably results from this isn't sustainable & will make us sicker. It's utterly cruel to just let us rot, not only without treatment but without ANY care.
#LongCovid
#MECFS
And though you're basically suffering from the same condition & the same neglect, still you aren't mentioned at all. While these new people complain (rightly) about lack of care and attention since the pandemic, you haven't had any for decades, & still don't! Unfair is the word.
They speak up as much as their illness allows and, because of their numbers, and because they were in a global mass-event, they get more media and political attention in a few years than you have had in the past few decades.
Failing at pacing and consequently making stupid decisions (I'm talking real dumb like 'let's mow the lawn how bad can it be?') is doing a horrid number on my self worth at the moment. Why can't I just rest?
Spoke to the the LC foundation. They disapprove me taking heparine bc its not a proven cure. And I better focus on accepting my illness. Told her I'm beyond a cure, but that I'll take any risk at a chance to reduce suffering. That concept was totally new to her
#severelongcovid
Reality Check: literally every time I post abt
#LongCovid
on Instagram, I lose 2-5 followers. And I can picture those ppl seeing my story, thinking: yeah yeah we know Anne, its so boring and negative; UNFOLLOW. Just a micro example of how the world sees and treats us, isn't it?
Ongelooflijk dat niemand buiten patiënten echt lijkt te beseffen hoe ernstig long covid voor velen is. Daardoor ga je zelf ook geloven dat dit absurdistische leven normaal is, dat het wel meevalt, slikken niet zeuren. Hoe zal het voelen als de echte erkenning eindelijk komt?
does anyone also have extreme brain pem as their dominant symptom in crash mode? And did you by any chance figure out a way to take the edge off? All I can think of now is eye-mask, noicecanceling headphones and lorazepam. Not a solution.
Vre-se-lijk. Maar heb me voor t hogere doel in een stoel gehesen om
@EenVandaag
te vertellen over mijn leven met zware
#longcovid
. Crew's next stop: Rotterdam voor gesprek met
@drMHellemons
over het heuglijke nieuws van (mede) haar onderzoeksinitiatief. vanav. NPO1, 18.15 📺
I've heard speculations, but for me it actually happens: I PEM-crash really hard from severe change in weather. Is this real for anyone else? Not accidental but every time?
#mecfs
#LongCovid
I wish people knew and understood that
#LongCovid
in most cases doesn't 'get better'. It's that lack of insight that makes some people give up on us. It's CHRONIC. And the longer it takes the more help we need, not less!
PEM, the centre of PAIS-suffering, should spark major curiosity, interest and funding. The term PEM-illnesses should we widely recognised and alarming to health professionals and the general public alike.
Just to be clear. This is not about ME vs LC, not in pathology and not in perception or in experience. This is about the history of illnesses that follows infection or remaining infection or whatever it is. We all need research and treatment.
When the
#longcovid
patients asked if they should consider the possibility of having
#MECFS
the ergo therapist said: I shouldn't say this but ME patients are often quite whiney, you are just not like that. Best not affiliate.
this happened not long ago.
Maintaining friendships with a LC-brain is becoming increasingly hard. Avoiding questions, afraid the answer will be too elaborate; canceling visits because PEM; having nothing to say or no energy to speak. It's just one of the many ways evil
#LongCovid
takes and takes.
I seem to have arrived at a new
#MECFS
level where oral speech and conversation have become the most exhausting of all exertions. It also seems that my personality is fading along with my ability to talk. Tell me a joke so I can laugh bc this shit aint funny.
#LongCovid
Gisteravond in
@oogopmorgen
vertelde ik half slapend over hoe ik en vele anderen wegrotten door long covid, over de nalatigheid van de overheid, over psychologiseren van LC en ME en wat ik van het long coviddebat van as woensdag verwacht. min 38.25.
Ziek en gedupeerd door het UWV
Het UWV is onzorgvuldig en nalatig geweest en oordeelde onjuist en gemakshalve dat ik nog wel 20 uur per week kan werken.
1/
Vandaag 40?! Ik blijf echter 38 tot er een effectieve behandeling komt. Ook leverde ik het manuscript van m'n boek in. Ik vind het zooo spannend. Je kan via deze link alvast een exemplaar reserveren mocht t je bekoren.
En zo weet niemand meer waarom ie opeens niet meer functioneert. En weet ook niemand hoeveel mensen long covid hebben. En is er dus geen urgentie dit te onderzoeken. Dit is wat je noemt een sluwe doofpot.
#pwME
&
#longcovid
, how do you cope with being locked onto the bed and not able to exercise? How do you manage to not gain a ton of weight when eating is the only distraction and comfort at times?
Pacing is not easy. It's like riding a highway in 1st gear. You can touch the peddles but you're not allowed. Everyone around you is speeding you past, they're all like: coming? no? okay see ya!
Ik denk aan al die mensen met LC (en al veel langer ME) met PEM die werden WIA-afgekeurd door gebrek aan kennis en geloof en in de bijstand terecht kwamen. Ik vind het zo ontzettend verschrikkelijk.
Hulde aan de onderzoekers. En aan alle patienten die al zo lang strijden. Een beetje gerechtigheid. Waar ik met collega's vanuit
#FNV
nadrukkelijk naar kijk: waarop zijn dan de
#wia
-keuringen gebaseerd geweest 😳? Met alle ingrijpende gevolgen voor inkomen van dien? 1/3
Is it not utterly ludicrous that those diagnosed with
#longcovid
are told (if lucky) not to exert themselves, but are never told what PEM or
#ME
is? When understanding this might be the difference between mild and severe?
Pas na 4 jaar kregen we een paar miljoen voor LC-poli's & dankzij inzet belangengroepen zijn die er nu.
Maar het natuurlijk een blamage dat kinderen nog niet terecht kunnen en als klapper op de fucking vuurpijl: dat er niet al decennialang PAIS poli's zijn voor ME, Q-koorts, etc!
Any papers or articles (not opinion) about the tendency/human nature to abandon ill friends? Looking for an explanation by ie a psychologist.
#longcovid
#chronicillness
The reason you're still sick is not bc
#longcovid
is new & research 'just takes a long time'. Nope, it's bc of "lacks": lack of funding, of urgency, lack of willingness to remove the mountain of bureaucracy standing between us and our health & to try and trial new treatment.
Ik heb dat niet zo gezegd geloof ik, maar de essentie is helder: een leven met zware long covid-ME is geen leven en dat zou genoeg reden moeten zijn om ME gvd eindelijk een keer serieus te gaan nemen.
@Marieclaire_NL
So what do we know about ME or long covid and neurodivergence or brain trauma? I know it's a sensitive topic but I can't help wonder why so many of us are neurodiverse. Any facts or thoughts?
sick as a dog.
- makes no sense, I'm relatively very careful and no wave rn.
- greatful for community members sending and bringing me the right drugs. 💚
- feeling really icky with this asshole inside of me again.
- spending remaining energy on not infecting my cat. not easy.
Oproep aan het toekomstige kabinet 🧵
1,3 miljoen Nederlanders hebben aan de coronapandemie langdurige gezondheidsklachten overgehouden. En ook al lijkt de pandemie voorbij, het coronavirus is niet weg: er komen dagelijks nieuwe long-covidpatiënten bij.
De
@VMkliniek
zegt zich te specialiseren in ME, waarvan PEM hét symptoom is. Dan vind ik deze regeling eigenlijk niet ethisch en een enorme red flag.
'Bij afzeggingen binnen 72 uur zijn wij genoodzaakt om 75% van de behandelkosten bij u persoonlijk in rekening te brengen.'
Iedereen in de
@kassa_bnnvara
aflevering over long covid zojuist was GENIAAL. Respect en dank voor het krachtige optreden van
@V_MatthiesBoon
en Melissa 🫂
Fall slide: after a baseline increase all summer with help from Mestinon, I have slid back into no light or sound or speech or movement. Only a brain full of battery acid. It started the day after the first cold night two weeks ago. No sign of improvement. This isn't just PEM.
Once the novelty of severe long covid wears off and the shock subsides, everything -space, time, memories, days, issues, thoughts- just melt into one big murky slush. Nothing stands out, everything is everything and nothing. What a nightmarish place to be.
Is attacking sick people online and making fun of them part of the culture wars and why? because it's covid related? It truly is one of the most inhuman and soulless things I've ever witnessed.
Show me a picture of the not ill you. It might be hard to look at, but this is just our bodily prison right? Underneath we are someone else, someone to remember!
I choose this photo because I was at a party, healthy and happy and having fun. I miss it so.
Vanaf vandaag kun je 'De achterblijvers' vinden in je boekhandel of op je e-reader. Het luisterboek volgt op 18 oktober 🎉. Ik wil op deze voor mij bijzondere dag wat over het boek vertellen en mijn dank uitspreken.
🧵
Ben net middenin een crash geïnterviewd voor EénVandaag over WIA. Wat een cognitieve uitdaging. Zie mij deze halfbakke presentatie leveren in de uitzending van zaterdag. Speciale extra special over LC en WIA.
Beroepsvereniging verzekeringsartsen weigerden in 2018 advies van de Gezondheidsraad over te nemen dat ME een ernstige ziekte is en als zodanig te behandelen. Gevolg is dat dit ⤵️ nog steeds gebeurt. brr.
Working on something and am including a list of things healthy people can do to support someone with and understand
#LongCovid
or
#mecfs
. What comes to mind?
📺 In Kassa gaan we vanavond in op de behandelmogelijkheden voor kinderen met long COVID. In Nederland zijn er naar schatting enkele duizenden kinderen die hieraan lijden. Er moet meer voor deze patiënten gebeuren, maar wat? Kijk om 19.15 naar Kassa op NPO2
#KassaTV
#NPO2
#COVID
Ziek en gedupeerd door het UWV
Het UWV is onzorgvuldig en nalatig geweest en oordeelde onjuist en gemakshalve dat ik nog wel 20 uur per week kan werken.
1/
Het gaat er niet om hoe licht van aard long covid bij de meeste mensen is, maar hoe onleefbaar de aandoening voor 90.000 mensen met de zware variant is. Hij schermt nu gewoon met de milde vorm. Zo laag.
My GP used the word deconditioning after I described how I got worse after a 2nd infection and I cut him off: no, it's
#longcovid
! and now i am gaslighting myself into thinking my temper has caused my symptoms 🌀
Deel 3 van deze nachtmerrie: UWV heeft zaak bekeken en beoordeeld dat (bedgebonden) patiënt het belastbaarheidsonderzoek moet ondergaan. Waar eerst sprake was van weglaten fysieke onderzoeken zijn deze alsnog verplicht gesteld.
1/4
Verpleegkundige met
#LongCovid
en ernstige PEM wordt door werkgever gedwongen om voor belastbaarheidsonderzoek op locatie meerdere afspraken van paar uur te ondergaan. Bij aanhoudende weigering wordt nu gedreigd haar loon in te houden. Wat zijn reëel haar opties?
The psychosomatic stigma of
#MECFS
in popular culture: In the first episode of the hospital dramaseries 'House' from 2004, doctor House treats a patient who claims to suffer from
#CFS
with mints from the vending machine.
Calling for help for a good friend with severe LC. She is being forced by her employer to undergo the fitness test at a physio as well as psychological essesment and bloodwork. She has severe PEM and can't do any of this. What is the best way to make her employer understand?
I think we should at least reconsider this as a go to phrase or excuse for doing a worth it thing. As dr. Ronald W. Davis said: triggering pem reactivates the illness.
Ik vond het zelf heel erg moeilijk om dit terug te lezen: is deze nachtmerrie echt mijn verhaal? In het volledige stuk ga nog in op ME, het uitblijven van daadkrachtig optreden overheid, eenzaamheid en de ondraaglijkheid van zware ME/LC.
1/2
don't know how long it will last but since I started
#TheNicotineTest
these are my Garmin stats when sitting up. Previously the stress level would have been 50+ and HR 70+. Also less to no brain PEM. I do expect it to collapse soon, as everything I've tried eventually has.