Former professional ballet dancer. Bed-bound M.E. patient. Using Twitter 2 raise awareness 4 Myalgic Encephalomyelitis #art2cureME #pwme #millionsmissing

Amsterdamned
Joined June 2011
🧵 Some feel that #pwme (& #longCOVID) are faking their condition or that they're making it all up. That it's deconditioning, kinesiofobia & lets not forget the secondary gains! This is me still in my dancing years. I felt alive, invincible & on top of the world. I adored my job
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Anil van der Zee © retweeted
Resultaten WOB-procedure subsidietoekenning door ZonMw aan ReCOVer onderzoek (Cognitieve gedragstherapie via internet) bij patiënten met longCOVID (ReCOver). Lees verslag en bijlagen op onze website: ow.ly/8s0o30s7PXt #ME #mecvs #PwME #LongCovid #LangCovid #PASC
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Anil van der Zee © retweeted
We have our ME/CFS blood study lift-off today!! Our first blood samples have been collected. Thank you @mecfs_sa for your huge role in making this happen and @polybioRF. We are humbled by the patient support. We will do our best. No hypothesis, let the data do the talking!
@resiapretorius @MatiesResearch @polybioRF @microbeminded2 We are so proud to play a small part in the ME research project conducted by the amazing, passionate and empathetic Professor Resia Pretorius & her wonderful competent team, also @polybiorf. We wish them all the best!
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You obviously still kept the kittens right?
yay, new podcast! my alt. therapist found a toxoplasma infection, gave me drops to treat it & then I developed a rash for a week that, according to GP, matched toxoplasmosis but nothing found in blood also, my ME got worse after I brought home 2 adorable kittens from the shelter
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Anil van der Zee © retweeted
We don’t need to start from scratch when it comes to treating #longcovid. Let’s build upon the decades of existing research in #MECFS. This is a must watch!!! Dr. Peter Rowe presents Observations on long COVID through an ME/CFS lens invidious.fdn.fr/iv5zoQz6vd8 via @YouTube
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Anil van der Zee © retweeted
“Het bevreemdt Knoop dat er bij ME/CVS zo’n duidelijk onderscheid wordt gemaakt tussen psychisch en lichamelijk.” Dat onderscheid maken Knoop en co zelf steeds. Waar het werkelijk om draait is het onderscheid tussen wetenschap en pseudowetenschap.
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Anil van der Zee © retweeted
Today we mourn Dr. Ron Tompkins, a pioneer in ME research, a clinician, and a stalwart ally of #pwME. Tompkins and I sat down together for discussions several times. I was so interested in his conversations re: ME & sepsis. As a man and as a scientist, he will be sorely missed.
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Anil van der Zee © retweeted
Dear OMF Family: It is with great sadness that we inform you of the sudden passing of OMF's beloved Chief Medical Officer, Ronald G. Tompkins, MD, ScD. As we join together to mourn this devastating loss, we would like to reflect on his tremendous legacy: bit.ly/3nEonVM
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Anil van der Zee © retweeted
In 2016, David Systrom & colleagues showed that you can have exercise intolerance even without any heart or lung problems - which some people had doubted! 🧐They attributed this to a type of #dysautonomia where the autonomic nerves fail to constrict veins!forums.phoenixrising.me/thre…
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Anil van der Zee © retweeted
One of the most exciting scientific studies from 2021 came from David Systrom. 😮This study reviewed exercise tests from #MEcfs patients & suggested that the reason for their exercise intolerance is impaired constriction of veins, a type of #dysautonomia! forums.phoenixrising.me/thre…
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Anil van der Zee © retweeted
Dr. David F. Marks: “Victim-blaming, gaslighting and the ‘all-in-the-mind’ philosophy of lazy doctors will become the mainstay of Long-Covid patients’ everyday experience. Just like the #MECFS patients before them.” davidfmarks.com/2022/01/17/t…
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Anil van der Zee © retweeted
The overlap is even greater than we thought. Global literature review reveals 25 of 29 ME/CFS symptoms are shared by those with Long COVID. Read the full review or a 2-min summary here: bit.ly/3pV6mmj
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❤️😍😂
Replying to @AlanCarson15
No thanks, it's better that you're being publicly dishonest.
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Anil van der Zee © retweeted
Tweet of the week…
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Anil van der Zee © retweeted
A system which makes #MECFS patients feel like they aren't doing enough to get better, doesn't understand how desperately they miss their healthy lives. Every fcking day.
🧵 Some feel that #pwme (& #longCOVID) are faking their condition or that they're making it all up. That it's deconditioning, kinesiofobia & lets not forget the secondary gains! This is me still in my dancing years. I felt alive, invincible & on top of the world. I adored my job
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Anil van der Zee © retweeted
There might be a time that #longhaulers like me will become better and leave the #pwME behind. My dream is whoever gets better will become the voice of the group that taught us, that caught us with open arms, to avoid the same thing that happened to them. DON’T FORGET!
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Anil van der Zee © retweeted
🧵This is the 5th thread dedicated to the precious children that have died from COVID during this never-ending pandemic. By telling their stories we'll ensure that their memories live on #SoulsLostToCovid
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Anil van der Zee © retweeted
Please would you all be so kind as to take a moment and sign this petition calling for more research into the causes of #LongCovid and #MyalgicEncephalomyelitis both debilitating and vastly misunderstood diseases 😊😘
✅✍🏻 please SIGN to help UK G’ment pay attention to #microclots testing Petition: Fund research into any relationship between microclots and long Covid and ME petition.parliament.uk/petit…
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