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Anil van der Zee ©

May 11, 2024

1) Having #severeME and being homebound often feels like a prison. You're locked up in your home and your body, away from society, your loved ones, from the life you desperately yearn to live.

Most years, I see maybe one or two people, and many years I

2) didn't see anyone at all. I often get the question how do I get by and how do I get help, even though I don't really see or communicate with anyone?

My health has somewhat stabilized since moving to a new and quiet place, and I can therefore do a bit more (hence the filming),

3) but other than these changes, I'm still very much imprisoned by ME.

So, like last year, I decided to document my life locked up in my home by ME to give a unique insight into my life with ME and how I spend the last year(s).

I hope you'll enjoy watching it. There are

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Anil van der Zee ©

@AnilvanderZee

Dec 13, 2023

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.

What bothered me the most was the section where

bpspsychub.onlinelibrary.wiley.com/doi/10.1111/bj…

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.

Theybit.ly/3Noqb1X

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

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Anil van der Zee ©

@AnilvanderZee

Oct 29, 2023

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

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Anil van der Zee ©

@AnilvanderZee

Oct 1, 2023

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.

mayoclinicproceedings.org/article/S0025-…

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Anil van der Zee ©

@AnilvanderZee

Sep 22, 2023

https://twitter.com/davidtuller1/status/1704965536168468599

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

https://twitter.com/davidtuller1/status/1704965536168468599

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,

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@AnilvanderZee

Sep 17, 2023

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."

“We’re

washingtonpost.com/health/2023/09…

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.

“We never see it that delayed,” Hwang says."

"Extensive lab work

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