I'm slowly realising that I probably have some mild #LongCovid
Since having covid (now had it twice since 2022): iron deficiencies, breathing problems, constant asthma, and now a sudden allergy to some foods apparently.
My partner and I have been careful throughout the pandemic but clearly not careful enough at times (twice each) since "opening up".
And though it could be far far worse, I feel pretty violated right now TBH.
"In this article, we review the evidence surrounding the post-acute sequelae of COVID-19 and the potential benefits of the use of heparin, with a special focus on the treatment of postural orthostatic tachycardia syndrome”
@tomkindlon@longcovid if they tried HIIT and didn't notice any symptom exacerbation, they're working with a sample of patients without actual PEM. There is no way.
"Before formally introducing this legislation in the Senate, the HELP Committee wants to hear from the Long COVID community to get their views on how this proposal can be improved and strengthened…
committee is particularly interested in hearing from Long COVID patients and their families, scientific researchers, and medical professionals"
I got COVID-19 back in mid-February for the first time. I'm feeling a lot better, but I have strange lingering symptoms. It's April 7th. Tired and loss of focus by 2pm, and ever since I got infected, I've been smelling weird odors and having similar aftertastes. Not consistent at all. Has anyone else experienced these symptoms? #COVID#COVID19#LongCOVID@longcovid
@longcovid
That post reminded me of other symptoms. As originally mentioned, I get tired and lose focus, by 2pm. Sometimes I'm useless after 2. I get winded or out of breath easier than before.
I get so drained that I must go sleep sometimes. I get a weird phantom fever where it feels like I have a fever, but when I check, I don't. I smell strange odors. I get strange aftertastes or just weird random tastes, similar to the odors. There are about five alternating odors and tastes. #LongCOVID
@longcovid As I've been adjusting to office hours and in person meetings, my colleagues invariably ask how I'm feeling after COVID. I usually just share that I am feeling better, but get very tired by 2pm. They laugh and usually share something about how that is normal and they get tired in the afternoon as well. I have to comment then that I've not felt this way prior to COVID, and that there are other lingering symptoms. The subject is usually dropped at that point. #LongCovid#COVID
@pixplz I cannot go to any medical facility without a mask...my chronic illnesses wouldn't make it through one case of Covid, let alone more. Anyone with young kids has to mask in my home, as well. It's just how I'm trying to stay alive during the last third (probably) of my life.
The vaccines against SARS-CoV-2 are among the very best ever developed.
Because the virus mutates and hybridizes so insanely fast, our bodies choose to NOT maintain immunity. Our bodies know that the current circulating variants will fade away in a year. And so our immune system forgets on purpose.
For vaccines to be majorly effective then requires twice (transmission) or thrice (severe disease) annual vaccination with constantly updated vaccines.
And this intentional forgetting of the immunity is compounded by the virus mutating and hybridizing to forms that the previous vaccine simply isn't effective against.
Far too many experts, understand this idea and yet do NOT understand that our immune systems intentionally forget immunity for most RNA viruses.
Instead they hold onto the wrong ideas that vaccines are effective for life, and hold the wrong idea that ONLY the changing variants are it.
When I gave an unmasked 'friend' a lift in my car, I wore a mask and had the filter on high between the seats (my dog was also in the car and needed good air).
I wouldn't go to the dentist relying on just this small filter.
"On March 15, 2024, Patient-Led Research Collaborative commemorates International Long COVID Awareness Day. On this day, we honor those with and affected by Long COVID globally. We collectively mourn those who lost their lives to Long COVID and COVID-19. Together, we raise awareness, foster community connectedness, and fight for our lives."
@ahimsa_pdx ...I've managed to work around some of it, but the brain fog has essentially blocked me from being a productive writer any more. I have my moments, but it's extremely difficult. It is nice to see, however, a foundation for support for those of us who suffer from these ongoing problems.
Developing effective strategies to optimize physical activity and cardiorespiratory fitness in the long Covid population- The need for caution and objective assessment
"In this review, the authors present an update to the literature relating to PESE in #LongCovid and make the case for evidence-based guidelines that support the design and implementation of safe rehabilitation approaches for people with Long Covid."
Be warned, it took a lot longer for me to complete than they advised, I guess because I had a lot to say in the free-text fields, but I imagine we all would. You can stop and start at any time as long as you finish in 2 weeks, though.
Towards the end I found some of the questions enraging, but that's the norm when they talk about mental health.
@longcovid If you're anything like me you'll probably find it fairly triggering in places, but that's par for the course. At the end of the day they can't act on our evidence if we don't tell them, so if you are able to do so, it's valuable, and I generally respect the work Patient-Led Research are doing in this area.
@longcovid Worth noting: they don't just allow or suggest you take breaks. The questions are interspersed with a reminder that it's OK to take a break if you need to and how to get back to the survey (just save the link in your browser). Many questions are also optional if you don't want to write an essay in a free-text field. I just really wanted to do that because my experience as a patient has been so, so bad.
I’m having a really rough time right now. I’ve spent four years doing everything in my power to not catch this fucking thing. Now my husband is being forced to travel for his job and have dinner with bosses.
It feels like all of that work and sacrifice means nothing. That I gave up spending time with loved ones for no reason. I missed birthdays and holidays so he could get a promotion, I guess.
@tomkindlon@pots@longcovid super interesting to read this. I have post viral syndrome from EBV that mimics long covid in many ways and have had tons of GI issues that I didn't have before Mono. Working on changes with my diet along with supplements has improved my ME/CFS. I hope learning about this study can give relief to people that need it.
@tomkindlon@longcovid I'm glad to see this. I've seen so many posts from people saying this was the only thing that helped with their fatigue. I hope the study gives good results!!
Ook als je geen LongCovid hebt ... Help je mee LC patiënten een plek voor behandeling en bundeling van specialismen te geven? Geld is niet eens het probleem.
#MEAwarenessHour
More #PEM awaits me over the next who knows how long. It never gets easier.
It’s never predictable anymore. The #RollingPEM I’ve developed as a result of so much overexertion during the last few years has made it into pain that I’m used to but never stop fearing.
We get it wrong because, as with any Olympic sport, success requires a coaching staff. Experts who can look at what you're doing every day and review what you did / how it affected your performance and provide guidance.
A doctor saying "You should pace yourself. Here's a pamphlet." is like a PE teacher saying "You should compete in the Olympics. Here are some YouTube videos."
@ahimsa_pdx@robotistry@longcovid today: felt a proper 7 on 10 scale on energy, so ofcourse after ergotherapy and lunch I thought it was high time to do some light gardening. 10 minutes of removing dead leafs and 5 minutes of pruning later my body starts protesting... Too much you fool 🙈😖 #pacing
But yeah, when PEM is delayed it gets so tricky. I way overdid things on Monday and I'm still recovering, but in the moment I felt fine, if a bit unsteady. I remember thinking, "oh, maybe I can tidy up the house more often than I thought." Nope! 😂
... En mocht er weer een economisch argument komen .... Mijn oproep:
qua marktwerking in de zorg voel ik mij als zorgconsument aardig langs zijlijn staan 😖 Aanbod (paramedisch) matcht niet met vraag (biomedisch). Start met combi van behandeling (slecht vooral ook de administratieve barrières) en onderzoek en sla handen ineen wetenschappers, artsen, verzekeraars, beleidsmakers, politici!
2/2 #LongCovid#PostCovid @longcovid
Sunday my wife, long Covid since 35 months, had for the fourth time some painful symptoms: acute atrocious pain in the left chest both on the front and under the arm, that spreads up to the ear and down to the hip, eyefield restriction, the left arm becomes impossible to move, she shakes and the left arm and the left hand inflates.
@longcovid
Some symptoms (inflated arm, reduced or absence of sensation in the arm, pain in the arm, some movement of the arm being impossible) last up to several months.
No clinical signs of a stroke, nothing abnormalon MRI. This happens when she is exhausted and in severe sleep deprivation for too long.
I wonder if anyone else had experienced or heard of these symptoms.
Heel belangrijk artikel ter ondersteuning bij bepaling arbeidsongeschiktheid in Nederlands UWV systeem. Weerlegging door medici met tig bronnen dat het simpel gezegd 'tussen de oren zit'. Specifiek geschreven op #LongCovid
@birdutterance@longcovid en als het dan nog een verwijt was... Dit leest als volledige overtuiging dat LC zo is: zelf gecreëerd brein mankement dat je met praten kan oplossen.
@Frieke72@longcovid Een verwijt is ook fout, de bewering dat de patiënt de eigen ziekte oproept is op zichzelf al ziek. Iemand die dat beweert verdiept zich niet in wat het is en lijkt alles te benaderen vanuit het uitgangspunt ‘ziektewinst’.
