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Hefzi

@hefziba.bsky.social
101 followers 351 following 57 posts

My child has #longcovid. That’s it, nothing else matters anymore.

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Babs Ruiz @ixabil.bsky.social · 08/06/2025
Dysfuntioneren richtlijnen + beroepsvereniging zoals NVK mbt #MEcvs en in daglicht. 🧵 Start met een reeks berichten via @zurhake.bsky.social nos.nl/artikel/2569... nos.nl/artikel/2569... 20.00 uur NOS Journaal 1e item npo.nl/start/serie/... Radiofragment: www.nporadio1.nl/fragmenten/n... 1/8
nos.nl
Therapie voor kinderen met uitputtingsziekte ME/CVS in twijfel getrokken
Kinderartsen willen een therapie tegen ME/CVS behouden terwijl deskundigen waarschuwen voor mogelijke risico's.
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Long Covid Nederland @longcovidnederland.bsky.social · 14/03/2025
Ontdek het eerste deel van de stands tijdens de Long Covid Patiëntendag 2025! 🛍️ ⬇️ www.linkedin.com/posts/petiti...
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Kate Violette @kateviolette.com · 28/12/2024
100%. It's funny you reach for a financial metaphor here because I also find that's one way I have a little more success explaining the flavor of disability that ME/CFS causes -- it's like our energy budget is below minimum wage, sometimes we don't even have enough money to cover the essentials.
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Hefzi @hefziba.bsky.social · 28/12/2024
We went to Germany. Got some tests, got some medication. Only the rich can afford #longcovid.
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Hefzi @hefziba.bsky.social · 27/12/2024
My child has been ill for 4 years. Expert clinics will open, but there isn’t enough capacity nor money for clinical studies to help the full cohort of children in Nl. nos.nl/l/2549727
nos.nl
Klinieken voor kinderen met long covid open, 'politiek mist kans om meer te doen'
Artsen en onderzoekers staan klaar voor kinderen met long covid, maar het ontbreekt aan politieke wil om hun voldoende middelen te geven.
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David Tuller @davetuller1.bsky.social · 19/12/2024
And they keep upping the ante in telling ME/CFS patients to go fuck themselves. Now Cochrane has retroactively downgraded the firm commitment to produce a new exercise review to a mere "pilot" project--a lie. I guess it's easier to justify dropping a "pilot" project that a full project???
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Danilo Buonsenso @buonsenso.bsky.social · 19/12/2024
you all ready to end the narrative about the psychological nature of #longcovid in children and being caused by lockdowns?
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Eric Feigl-Ding @drericding.bsky.social · 13/12/2024
A lot of doctors are no long working or working full time since their COVID infection.
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Hefzi @hefziba.bsky.social · 11/12/2024
Went out to buy chicken. Came back with lots, but forgot to buy the chicken.
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David Tuller @davetuller1.bsky.social · 09/12/2024
excellent response from @domsalisbury.bsky.social to unwarranted recommendations in new review from @bmj.com of treatments for Long Covid. www.bmj.com/content/387/...
bmj.com
Heterogeneity in long COVID and inadequate assessment of post-exertional malaise contribute to issues of indirectness in trials with high risk of bias
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Putrino Lab @putrinolab.bsky.social · 10/12/2024
This is a @davetuller1.bsky.social appreciation post. Every time there is a badly conducted #LongCOVID, #MECFS or IACC paper being published, he is there organizing a cogent response. I cannot tell you how essential he is to academics and clinicians battling misinformation in the field.
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Hefzi @hefziba.bsky.social · 09/12/2024
The question is how did the BMJ editors not notice this themselves or the reviewers.
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Long Covid Advocacy @longcovidadvoc.com · 09/12/2024
🔥Multi-signed letter to the @bmj.com about the systemic review recomm. CBT & exercise for #longcovid "In short, if the trial paper required a correction for not highlighting prominently enough an indisputable limitation of its findings, then the review requires the same." #medsky #gpsky #idsky
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Anonymous @youranoncentral.bsky.social · 09/12/2024
Hundreds are waiting outside of Sednaya prison for news about their loved ones. The rebels found multiple under ground levels and have been unable to break past the 2nd one. Rescue operations still underway, they are debating on asking the international community for help to save thousands trapped.
Families waiting
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Danielle Beckman @daniellebeckman.bsky.social · 08/12/2024
We need to bring the debate about the ME scandal here to Bluesky. Do you know what is Myalgic encephalomyelitis (ME)? A chronic illness commonly triggered by an infection, affecting millions for decades. The video below shows how it is still perceived by many. Enough.😡 #MECFS #LongCovid #MEscandal
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Hefzi @hefziba.bsky.social · 08/12/2024
I gave my Dutch one away. So I ordered it in English. #longcovid
Danilo Buonsenso’s book: My no-filter travel journal. The book covers his personal journey helping children with longcovid. He is a key opinion leader in pediatric longcovid and is an MD with a PhD.
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Hefzi @hefziba.bsky.social · 08/12/2024
My GP diagnosed me with #longcovid already in 2020. She said: I don’t know how to help you, but whatever you suggest I will consider. And she has since. I wish you all a GP like mine. #ME
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Douglas Kell @dbkell.bsky.social · 07/12/2024
dbkgroup.org/longcovid.
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Douglas Kell @dbkell.bsky.social · 03/12/2024
Brilliant preprint on treatments for #MECFS and #LongCovid. GET is predictably a disaster. #TeamClots www.medrxiv.org/content/10.1...
medrxiv.org
Patient-Reported Treatment Outcomes in ME/CFS and Long COVID
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID are persistent multi-system illnesses affecting many patients. With no known effective FDA-approved treatments for either con...
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Hefzi @hefziba.bsky.social · 07/12/2024
#longcovid is a dynamic disease. It’s so fucked up and difficult to explain, even my parents still don’t understand what my child is going through and asked me if I will take him with me to the sports school.
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David Tuller @davetuller1.bsky.social · 03/12/2024
The BMJ @bmj.com has published a review of Long Covid interventions that of course recommends CBT and a mental/physical health rehab program. But the studies underlying the recommendations are at "high risk of bias." This is really propaganda. virology.ws/2024/12/03/t...
virology.ws
Trial By Error: Yet Again BMJ Recommends CBT and Exercise for Long Covid | Virology Blog
By David Tuller, DrPH What is going on at The BMJ? In May, the journal corrected an obvious error in a paper about a prominent Long Covid mental and physica ...
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Hefzi @hefziba.bsky.social · 05/12/2024
Wetenschappers en artsen die bedgebonden zijn die moeten vechten tegen wetenschappers die betaald worden en een conflict of interest hebben. Dat is de wereld van #ME en #longcovid
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NOS @nieuws.nos.nl · 05/12/2024
Politieke steun voor extra onderzoek naar behandelingen long covid onzeker #Binnenland #Politiek
nos.nl
Politieke steun voor extra onderzoek naar behandelingen long covid onzeker
Patintenorganisatie vrezen dat er geen financiering komt voor extra onderzoek naar de behandeling van long covidsymptomen. Vandaag zal de Tweede Kamer stemmen over een amendement dat 21 miljoen euro moet reserveren voor aanvullend onderzoeksbudget en er lijkt geen meerderheid.ppDaardoor wordt het lastiger om op korte termijn op grotere schaal de ingrijpende ziektesymptomen aan te pakken bij bijna een half miljoen patinten met long covid, zo waarschuwen PostCovidNL en Long Covid Nederland.ppEr worden nu al tientallen miljoenen euros besteed aan onderzoeken naar de oorzaken van long covid, ook wel post covid genoemd, maar slechts een beperkt aantal studies zijn erop gericht om uit te zoeken welke bestaande medicijnen alvast de symptomen kunnen verzachten. Omdat er nog geen genezende behandeling bestaat, is effectieve symptoombestrijding voor nu het hoogste haalbare.ppOm dit te bereiken hebben academische ziekenhuizen in Rotterdam, Amsterdam en Utrecht vorige maand de deuren van hun gespecialiseerde longcovidklinieken geopend, juist om ervaring op te doen met het behandelen van symptomen. Het idee is dat de opgehaalde kennis wordt gedeeld met huisartsen zodat zij zelf ook patinten kunnen behandelen. Patinten kunnen dan op grotere schaal worden geholpen omdat de klinieken zelf ongeveer 5000 patinten kunnen zien.ph2Artsen terughoudend met experimentenh2pMaar om dit mogelijk te maken voor huisartsen is klinisch onderzoek naar die behandelingen van symptomen essentieel, zegt Diewke de Haen, directeur van PostCovidNL. Anders blijven dit soort behandelingen experimenteel en daarmee zijn huisartsen terughoudend. Zij wachten tot de behandelrichtlijnen worden aangepast en daar heb je die onderzoeken voor nodig.ppDe Haen benadrukt dat wetenschappelijke onderbouwing van behandelingen voor zorgverzekeraars een voorwaarde is om die te vergoeden. Dus je kunt in de expertisecentra nog zoveel ontdekken, zonder onderzoeken die de veiligheid en effectiviteit van behandelingen bevestigen, hebben de meeste patinten er weinig aan.ppGroenLinksPvdAKamerlid Julian Bushoff heeft daarom een amendement ingediend. Er is steun van veel oppositiepartijen maar zorgminister Fleur Agema heeft aangegeven tegen het amendement te zijn. Volgens de minister is er geen sprake van een tekort aan middelen en geld voor onderzoek.ppIntegendeel, de artsen van de longcovidklinieken werken nauw samen met het wetenschappelijke PostCovid Netwerk Nederland om op de laatste wetenschappelijke inzichten snel te leren over long covid, aldus Agema, die eerst de resultaten van deze onderzoeken wil afwachten voordat er extra geld wordt genvesteerd.ph2Jaren vertragingh2pVolgens De Haen betekent dit jaren vertraging voor patinten die in sommige gevallen al bijna vijf jaar wachten. We hebben een lijst met medicijnen die geen onderdeel zijn van onderzoek maar wellicht kunnen helpen om de kwaliteit van leven te verbeteren. Met 21 miljoen euro kunnen we twintig studies opzetten, waarvan tien voor kinderen.ppWat het vinden van dit geld bemoeilijkt is de vraag of de begroting van het kabinet door het parlement wordt geaccepteerd. Dat beperkt de financile speelruimte. Zo valt de geplande miljardenbezuiniging op onderwijs mogelijk deels weg, waardoor het kabinet ergens anders geld moet vinden. Daarnaast eisen ook de gemeenten miljarden euros van dit kabinet om bij te dragen aan hervormingen in de zorg.ppPolitieke wil om extra geld voor onderzoek vrij te maken wordt er dus niet groter op.ppWe hebben met andere coalitiepartijen de afweging gemaakt in de context van een heleboel waardevolle amendementen waar stuk voor stuk dekking voor nodig is, zegt NSCKamerlid Danille Jansen. Er valt overigens veel te zeggen over de financiering vanuit verschillende ministeries, maar uiteindelijk zullen we moeten kijken wat er mogelijk is met de middelen die wl beschikbaar zijn.ppBushoff hoopt dat partijen uit de coalitie toch nog zullen draaien. Op de enorme zorgbegroting is 21 miljoen euro relatief weinig geld terwijl de impact groot kan zijn. Zonder de klinische studies zullen slechts een paar duizend patinten geholpen kunnen worden in plaats van potentieel honderdduizenden. En er is dekking, dit is geld dat is overgebleven op de zorgbegroting.p
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Eric Topol @erictopol.bsky.social · 14/11/2024
Economic burden of Long Covid in the UK estimated to be >$20 billion per year from real cohort data bmjopen.bmj.com/content/14/1...
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Hefzi @hefziba.bsky.social · 05/12/2024
Yesterday we set up a Christmas tree, today he can’t get out of bed. We still count our blessings as some kinds can’t even set up a Christmas tree. #longcovidkids #ME #longcovid
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Hefzi @hefziba.bsky.social · 04/12/2024
The most wonderful thing is when my child is laughing and happy and just himself in the house. At the same time I hold my breath, because this alone could put him in a PEM crash. #longcovid #ME/CFS
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Babs Ruiz @ixabil.bsky.social · 04/12/2024
We're going into the 4rd year here. 14 years old now. Nothing left. Can't even decorate a Christmas tree without severe PEM next day. Finished the library under 12 at 11. Can't even read a book anymore. Can't walk 10 minutes a day. Can't have a conversation for 5 minutes Can't wash her own hair
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TRAstonDrs @castltrastondrs.medsky.network · 04/12/2024
#MedSky🧪 #IDSky #Immunosky #Publichealth @DanMissailidis new #LongCOVID pilot study found two genes whose mRNAs separated a small cohort of LC from recovered #postCOVID blood samples with 100% accuracy: www.frontiersin.org/journals/imm...
frontiersin.org
Frontiers | A blood-based mRNA signature distinguishes people with Long COVID from recovered individuals
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Hefzi @hefziba.bsky.social · 04/12/2024
My son can play a bit online despite his #longcovid Unknowing to my son, I watched the documentary #ibelin and asked him why gaming is important to him. He answered: It’s his portal to a normal life. He speaks with friends, and sometimes goes for a run in the game, because it makes him feel free…..
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Marc Veldhoen @marcveld.bsky.social · 03/12/2024
Transcriptional reprogramming primes CD8+ T cells toward exhaustion in Myalgic encephalomyelitis/chronic fatigue syndrome Are T cells are inherently different in ME? Yes, but this is likely a consequence, not the cause. www.pnas.org/doi/10.... 1/10
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Marc Veldhoen @marcveld.bsky.social · 30/11/2024
Viral persistence is a complex phenomenon observed in several viruses, particularly those from the herpes family. These viruses can enter a latent state, evading detection by the innate immune system through mechanisms that aren't fully understood.
Picture portraying viruses in the body.
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Hefzi @hefziba.bsky.social · 03/12/2024
I woke up panicking and now am waiting. My son went into a deep crash yesterday evening. Will he recover with sleep or will he have to stay in bed and the dark? #longcovid roulette is breaking my heart.
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Hefzi @hefziba.bsky.social · 03/12/2024
An article to send to anybody you want to explain how you feel with #longcovid.
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Hefzi @hefziba.bsky.social · 01/12/2024
It’s worth reading the subtrack in the end of the thread. As a PhD in organic chemistry a LC sufferer and having a child that suffers, I am truly interested in the mechanics of #longcovid, but without jumping to conclusions too quickly.
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Hefzi @hefziba.bsky.social · 01/12/2024
I have been out for two days. On Friday I have a presentation to the “Gezondheidsraad” the health council in the Netherlands to advocate for children and teens with #longcovid. I have moderate LC, but the day was long, but I wanted to ensure I did right to all who are suffering at such a young age.
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Prof Nisreen Alwan @nisreenalwan.bsky.social · 29/11/2024
Recommendations from our research. You can read n detail using the link above.
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Hefzi @hefziba.bsky.social · 30/11/2024
Yesterday we had a gathering of all PAIS patient organization. All of us are afraid that irreparable damage is being done to our or our loved ones bodies. One person said, what was your best moment the past week, as this should show that you are still able to get to that level.
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Hefzi @hefziba.bsky.social · 30/11/2024
My son is so good in pacing he tells me off when I do to much. #longcovid
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Hefzi @hefziba.bsky.social · 29/11/2024
today was a good day, how was yours? #longcovid #ME
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Patient-Led Research Collaborative @patientled.bsky.social · 26/11/2024
NYT columnist @zey.bsky.social has written about PLRC & how we've made some of the best #LongCovid research possible, despite being a small group of chronically ill people. She's very kindly chosen us as this year's nonprofit to donate to, and we're deeply honored! www.nytimes.com/2024/11/26/o...
nytimes.com
Opinion | Donate This Holiday Season: Long Covid Research Need Your Help
A group of long Covid patients is financing research and making progress.
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Marc Veldhoen @marcveld.bsky.social · 26/11/2024
Older people may have better immunity against bird flu virus Most people born before 1968 have antibodies against flu viruses similar to the H5N1 strain circulating today, which might lower their risk of severe illness. by @carissacwwong.bsky.social www.newscientist.com... 1/4
newscientist.com
Older people may have better immunity against bird flu virus
Most people born before 1968 have antibodies against flu viruses similar to the H5N1 strain circulating today, which might lower their risk of severe illness
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Todd Davenport @sunsopeningband.bsky.social · 26/11/2024
1.7% of a population with a large closed health system in the U.S. had ME/CFS-like illness as defined by IOM criteria. 14% of all cases had COVID-19 as a precipitating factor. ME/CFS is still the most common thing nobody's ever heard of. journals.plos.org/plosone/arti...
journals.plos.org
Impact of COVID-19 on myalgic encephalomyelitis/chronic fatigue syndrome-like illness prevalence: A cross-sectional survey
Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be triggered by infectious agents including severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). However, the impact...
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Danilo Buonsenso @buonsenso.bsky.social · 26/11/2024
does anyone know why this person that shared his positive recover from #longcovid with rapamycin has now deleted is blog post?
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Resia Pretorius @resiapretorius.bsky.social · 26/11/2024
2/2) “They are releasing draft recommendations every month, with a brief period for public feedback. We have significant concerns with their draft recommendations for November 2024, and we encourage as many people as possible to submit comment”
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Babs Ruiz @ixabil.bsky.social · 21/11/2024
Demystifying Long COVID Net Buonsenso gezien. Over #longcovidkids. #LongCOVID #DemystifyingLongCOVID Krachtige goede presentatie. Dank Danilo @buonsenso.bsky.social
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Danilo Buonsenso @buonsenso.bsky.social · 23/11/2024
despite what most colleagues think (most of them doing research without seeing patients) I am more and more convinced that #longcovid is the EASIEST (or one of the easier) CLINICAL diagnosis in medicine. easier than pneumonia
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Hefzi @hefziba.bsky.social · 25/11/2024
Today was a good day. My son went two hours to school and had pizza at his brothers place, who lives just beneath us. Did you have a happy moment today?
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Danilo Buonsenso @buonsenso.bsky.social · 25/11/2024
as I’m receiving more and more requests of help, I’m sharing a last one bearing several take home messages: 1-you can still develop severe #longcovid if infected in 2024 2-you can have it if you are healthy young person 3- even if you’re a med student 4- your life can be destroyed or stopped 1/
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Hefzi @hefziba.bsky.social · 25/11/2024
Difference between ill and healthy children. My ill child is supposed to be in his fifth year of school. He isn’t even halfway year 3 yet on a special school for Ill children. He attends one or two hours, when he can. I asked him if he wants 5 weeks off. No way he said: He loves school!
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