Een bijna hilarisch alternatieve feiten stukje in @kwakzalverij over "#CVS" en @NICEComms. Hier kan het Artsen Covid Collectief nog een puntje aan zuigen.
Misschien is het goed om ook deze stukken te lezen om deze "feiten" toch wat te weerleggen.
1) In a Dutch study by Anouk Vroegindeweij et al. they studied a tailored self management strategy in children with #QFS, “#MECFS”, #longCOVID or rheumatic condition which they claim was somewhat effective.
2) they are praising CBT as “some of the most effective treatments to alleviate symptoms”. The authors seem to be completely oblivious to the fact that science has slowly been moving away from this form of CBT with a graded activity component.
3) refer to their own trial FITNET by Nijhof et al. and claim a 64% recovery rate but fail to mention that an analysis by Vink et al. showed that in studies with natural recovery there are quite a few studies that score similar or much higher than FITNET. The highest was 94%. One
1) "Thomas Bast, the epileptologist, has experienced in his closest circle that pacing can stabilize patients. His daughter, who was born with an immune deficiency, became ill at the age of 14 and developed severe disease. Today she is 18, in a wheelchair zeitung.faz.net/fas/leben/2023…
2) and unable to sit through a full day of school. She plans to complete her high school diploma at a specialized boarding school within the next four years.
In January 2020, the teenager contracted an infection. In the following months she developed an intolerance to exertion,
3) even for noise and light, had a constantly elevated temperature of up to 38.8 degrees, and suffered from diarrhea. In the summer of 2020 she received the diagnosis of #MECFS in Munich. In spring 2021 she could only lie in a darkened room; three minutes of communication was the
1) Wat ontzettend teleurstellend, deze hele #ALK - nu zelfs #HALK - en somatische systeemstoornis beweging. Er staan best ook wat nuttige dingen in dit document, maar het op 1 hoop gooien van symptomen & het reduceren van symptomen van ziektes tot alleen aanhoudende lichamelijke
2) klachten door middel van extreem overinclusieve heterogene termen onder het mom van ziekte overstijgende factoren en transdiagnostiek is niemand bij gebaat.
#SOLK was al een niet zeggende heterogene draak. ALK & HALK doen er nog een grote schep bovenop.
Ik zie dat men "#CVS"
3) hieronder schaart. Lees dan gewoon deze paper; daar heb je veel meer aan dan deze "handreiking" over hardnekkig #ALK. Dit soort informatie ga je ook niet in de #SOLK standaarden vinden, en dan sla je als behandelaar onbedoeld alsnog de plank flink mis.
1) Professor @VirusesImmunity about Long-Covid being a functional disorder:
"What we're saying is that #LongCovid at least,
what we're able to already obtain data from patients is that we can explain 94% with accuracy, 94% accuracy long COVID just by looking at the
2) immunological factors alone. So to me that
says that this disease is driven by, you know, something, or immune response to the infection or something else that's triggered by the infection, and we don't need to invoke other hypotheses to explain it.
And that's why, you know,
3) if the functional whatever, you know,
hypothesis is true, I'd be happy to see the evidence of whether, you know, there are parameters can explain with accuracy #LongCOVID and whether that it's going to lead to some kind of a therapy. But that's not what we're seeing, I think,
1) "Her dogged efforts led to a new scientific discovery at the National Institutes of Health and a promising new line of research that may end up helping many other people with chronically fatiguing illnesses, possibly including #longcovid."
2) very excited about trying” drugs to treat the problem identified in Twinam, said Paul Hwang, an @NIH researcher who led the work."
"Hwang brought Twinam to Bethesda in 2017. During a battery of tests, a curious result popped up. Twinam’s calf muscle took a long time to
3) replenish an energy-carrying molecule after a short exercise session. In other patients with Li-Fraumeni syndrome, this molecule regenerates in an average of 35 seconds. In Twinam, it took 80 seconds.
1) When I die many of my healthy friends and colleagues will write how I was plagued and hampered by my disease. Some might even see this as a failed career, but you never stop being who you are. Even when you're ill you remain the same person and artist.
Plus they might have no
2) clue what we patients have accomplished from our beds. We have succeeded in so many things. Especially considering our disability it deserves all the praise it can get and so much more. Although I was lucky to still dance for a good chunk of my career I had to stop
3) prematurely. I might not have reached goals I wanted to in regards to my work, but I still very much feel I succeeded in life as a whole. I hope people will get to see and remember me by that as well. I'm very much proud to be me, even with the ME.