Dysfuntioneren richtlijnen + beroepsvereniging zoals NVK mbt #MEcvs en in daglicht.
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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...
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Ontdek het eerste deel van de stands tijdens de Long Covid Patiëntendag 2025! 🛍️
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www.linkedin.com/posts/petiti...
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.
We went to Germany. Got some tests, got some medication.
Only the rich can afford #longcovid.
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
Or the amount of children poisoned. How?
I’m also surprised at the amount of children suffocating. Is this also higher in the USA? Parents should be taught how to avoid and help a suffocating child .
It just crazy, I would almost call it criminal that these simple tests are not the first things that are being done. So much of people’s lives down the drain because of fairy tails from the past.
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???
you all ready to end the narrative about the psychological nature of #longcovid in children and being caused by lockdowns?
A lot of doctors are no long working or working full time since their COVID infection.
Went out to buy chicken. Came back with lots, but forgot to buy the chicken.
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/...
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.
The question is how did the BMJ editors not notice this themselves or the reviewers.
🔥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
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.
Never new that. What about IBS probably also a MCAS thing?
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
I gave my Dutch one away. So I ordered it in English.
#longcovid
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
I started adding 2000U of natto to his medication recently, but don’t know how much can be combined with clopidogrel. He is getting older now so I am less afraid to experiment, but I used to be afraid, even though our GP took over the prescriptions we got in Germany.
Http://dbkgroup.org/longcovid/.
Thank you. He and I started on clopidagrel since 2022 and it has made me able to work again . It has brought more room in his existence, but he stil got worse after a year . We are going to Germany to test on miclots ( again) . Maybe he needs something stronger.
Brilliant preprint on treatments for #MECFS and #LongCovid. GET is predictably a disaster. #TeamClots
www.medrxiv.org/content/10.1...
#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.
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...
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
We also see empirically in our long covid kids Facebook group that children stay ill beyond 2 years and that they become worse after reinfection. This might not be scientific data, but on an individual level it’s horrible to see your child become worse again and their world to become much smaller.
