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Anil van der Zee © Profile picture
@AnilvanderZee
May 16 • 3 tweets • 2 min read Twitter logo Read on Twitter
1) Yay, the new EAPM conference is coming with Per Fink (you know the psychiatrists that was involved in locking up a #severeME patient against her will in Denmark for 3 years where she, by police force, was removed from her home) & Michael Sharpe author

eapm-conference.org/images/site/EA… Image
2) of the PACE-trial get to talk about "CFS".

Prof Hans Knoop gets to talk about his #longCOVID CBT trial & of course Prof. Judith Rosmalen as vice pres. is in the orgasation committee

eapm-conference.org/index.php/comi…

It's called dialogues between professionals. Of course it is because Image
3) the patient community does not agree with their harmful treatments and views.

It's crazy to think that in the NL we see exactly these kind of researchers like Knoop en Rosmalen receive funding after all the harm that has been caused by this/their type of "research". @ZonMw

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More from @AnilvanderZee

Anil van der Zee © Profile picture
May 8
1) The new Dutch CBT trial for #longCOVID. From my initial scan. @amsterdamumc
academic.oup.com/cid/advance-ar…

All subjective outcome measures. The actometer that was used at the beginning of the trial to assess patients activity that could've provided objective evidence of
2) improvements was not used? Neither right after the trial or at 6 months. Sounds very familiar where with studies in "CFS" and QFS the disappointing objective outcomes measure never seem to match the "positive" subjective outcome measures. So what do those physical function
3) questionnaires really mean? 

Patients might simply report improvements because they received more attention than those with regular care that didn't. We all know the care that people with #LongCovid isn't that great in the Netherlands. 

The majority of the patients were
Read 6 tweets
Anil van der Zee © Profile picture
May 6
1) Conference abstract: "All 62 patients demonstrated preload failure (pRAP < 6.5mmHg). Of this group, 54 patients (87.1%) fulfilled NAM criteria for ME/CFS, with 32 testing positive (59.3%) for small fiber neuropathy (SFN) using either morphological and/or functional testing.
2) Significant correlations were found between pVOg and both AH (r=-0.439. P<0.05) and AETCO, (r=0.474, P<0.05) during TTT. The same tilt table variables were found to be significantly correlated with pQc (r=-0.365, P<0.05 and r=0.351, P<0.05) from the iCPET.

It should be noted
3) that 8 of the #MECFS SFN patients (25%) fulfilled diagnostic criteria for postural orthostatic tachycardia syndrome (POTS) based on the tilt table test.

Decreased oxygen uptake and cardiac output at peak exercise during iCPET correlated with a greater change in heart rate and
Read 4 tweets
Anil van der Zee © Profile picture
Mar 9
Ik vond dit opzich echt een goed artikel door Rinske van de Goor. Ze slaat op vele vlakken de spijker op z'n kop, maar ik was jammer genoeg ook teleurgesteld.

bit.ly/3ZUDFpX

Ik zie vaker artikelen door artsen en wetenschappers voorbijkomen waar over de terechte
wanhoop rondom #longCOVID geschreven wordt, maar ik zie maar weinig artsen die het aandurven om over de geschiedenis van dit soort post-infectieuze aandoeningen te schrijven.

Over het gebrek aan biomedisch onderzoek en subsidie.
Het hoofdzakelijk focussen op gedragsmatige interventies die niet alleen ineffectief waren/zijn, maar vanwege de post-exertional malaise (#PEM) en de focus op het opbouwen van activiteiten bij ME in potentie ook schadelijk kunnen zijn.
Read 11 tweets
Anil van der Zee © Profile picture
Mar 8
"@BhupeshPrusty Prusty thinks #MECFS originates in early childhood, when most people are infected by human betaherpesvirus 6B (HHV-6B), which causes a mild illness lasting a few days. “Afterwards, the virus stays in our body for the rest of our lives,” 🧵

archive.vn/2023.03.04-224…
says Prusty. Later in life, the virus can become reactivated – and it is this that Prusty and some others believe causes ME/CFS.

In a 2021 study, Cliff and her colleagues took monthly saliva samples from 30 people with #MECFS and 14 people who didn’t have the condition. Those 🧵
with #MECFS had higher levels of HHV-6B and another herpes virus, HHV-7, than those without. In people whose symptoms fluctuated over time, more severe symptoms were associated with higher levels of HHV-6B and HHV-7, than those without. In people whose symptoms fluctuated 🧵
Read 8 tweets
Anil van der Zee © Profile picture
Nov 24, 2022
1) Ik kan er gewoon echt niet bij. Hoeveel schade dit soort wetenschappers/artsen zoals Nijhof en Van de Putte bij kinderen met ME hebben aangericht met hun CGT/GET werk is ongelooflijk. Dan een penning en er wordt geapplaudiseerd? Mensen in de medische wereld hebben echt geen
2) idee! De wereld volledig op z'n kop!!

Lees graag deze analyse over FITNET van deze artsen/onderzoekers.

mdpi.com/2076-328X/7/3/…

Een kort samenvatting door de @MEcvsVereniging. Een soort Nederlandse PACE-trial…

m.facebook.com/ME.cvs.Verenig… 

#pwme
3) De NICE richtlijnen beoordeelde van de 236 CGT/GET-uitkomsten: 205 van de uitkomsten "zeer lage kwaliteit". De overige 31 "lage kwaliteit". Geen van de uitkomsten werd hoger dan laag beoordeeld. De papers van Nijhof maakten ook deel uit van hun review.

thesciencebit.net/2020/11/21/no-…
Read 9 tweets
Anil van der Zee © Profile picture
Oct 5, 2022
1) Ik ben nu 15 jaar ziek en ik ben #BOOS, maar niet omdat ik ziek ben. Hoezeer ik er ook van baal en dat ik niets liever zou willen dan beter worden. Zie ik ziek worden en zijn ook deel uitmaken van het leven.

Waar ik wel boos over ben is dat toen ik 15 jaar geleden

#ziekBOOS Image
2) na een CMV infectie aangaf dat ik zieker werd van fysiek over mijn grenzen te gaan ik als professioneel balletdanser, die natuurlijk goed aanvoelde hoe z'n lichaam normaal op inspanning reageerde, niet geloofd werd.

Dat ik ondanks dat aangespoord werd om therapieën

#ziekBOOS
3) Dat ik ondanks dat aangespoord werd om therapieën te volgen die mij juist m'n grenzen liet overschrijden waardoor ik toen een stuk zieker ben geworden. Tot op de dag van vandaag vraag ik me af of dit van invloed is geweest hoe ziek ik nu ben.

Ik ben boos hoe er

#ziekBOOS
Read 21 tweets

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