1) OMG we did it‼️‼️

In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before, not just in the Netherlands

2) but possibly worldwide!

They speak candidly about their experiences with illness, what they were taught (or not taught) in medical school, and how that shaped their own treatment decisions—sometimes even leading to harm.

They reflect on how becoming patients themselves

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),

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

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,

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"

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,

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

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

1) "Now, researchers have identified a protein that’s present at unusually high levels in the muscles of people with #MECFS and that disrupts cells’ ability to generate energy. The findings, reported today in the Proceedings of the National Academy of

science.org/content/articl… 2) Sciences, could point to new therapeutics for this condition and for illnesses that share similar characteristics, such as #LongCovid."

"It’s not clear what causes high WASF3 levels in the first place. Hwang suggests a role for endoplasmic reticulum (ER) stress—a dysfunction

1) The results made it clear that exercise was indeed causing #MECFS patients’ guts to leak – spilling gut bacteria and food contents into the blood. One side of the immune system – the antibodies – leapt into action. Another side – the early

healthrising.org/blog/2023/07/1… 2) inflammatory immune response that’s designed to quickly neutralize the invaders – did not, however.

Plus, an anti-inflammatory factor called IL-10 that both knocks down the early immune response and interferes with glucose metabolism in the gut was elevated in #MECFS.

That

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

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.

https://twitter.com/TomKindlon/status/1654609616611713024

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

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.

"@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 🧵

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

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 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

1) Beste Ruben Mersch,

Dank u wel voor uw artikel over disease en illness. Hoewel ik zelf het gevoel heb wat u schrijft al langer geopperd en over geschreven wordt, wilde ik u toch nog even over ME schrijven. U omschrijft het als een "vuilnisbakdiagnose" die in het biomedische

https://twitter.com/decorrespondent/status/1577167885155319810

2) model niet echt als ziekte wordt gezien aangezien de lichamelijke oorzaak (nog) onbekend is. Als je een illness hebt zonder een aantoonbare disease val je dus vaak buiten de boot. 

Het klopt dat er vaak lacherig over ME gedaan wordt, en dat patiënten vaak niet serieus genomen

1) For #severeMEday I've decided to post a picture of me in the light. I've been doing so the last couple of months. Since I've moved to my new place and crash less because the noise of my neighbours, I can allow myself to do things like quickly take a picture in 2) the light right before I'm about to get up without it making me too ill.

While these pictures seem like I'm doing rather well, these are just snap shots, and the rest of the day I still live in a darkened home, with earplugs, silent, no visitors & with some exceptions no

1) An interesting study, but an important limitation is the lack of data for post-exertional malaise and brain fog. The authors use the fact that these symptoms were not yet seen as related to Covid-19 at the beginning of the pandemic, and that this only became apparent at

https://twitter.com/EricTopol/status/1555320217827307520

2) a later stage, as an excuse that these symptoms were not included.

I thought this was an a bit of an odd statement. Both Tim Olde Hartman d Judith Rosmalen were members of the Dutch Health Council for "#MECFS" for 2 years, which was published in 2018. Post-exertional malaise

@ALKnieuws @FontaineBoeken 1/ De informatie over "#CVS" in het boek van Fleming is misleidend. Er wordt een veel te positief beeld van een CGT studie geschetst. 50 % die zich veel beter of heel veel beter zou voelen is niet wat de data daadwerkelijk laat zien. Jammer dat jullie dit

drive.google.com/drive/folders/…
@ALKnieuws @FontaineBoeken 2/ niet aanhalen.


Ook de meta analyse waar ze naar verwijst concentreert zich op psychosociale factoren waarom iemand slechter van CGT zou worden, maar het meest voor de hand liggende symptoomjournals.sagepub.com/doi/full/10.11…

1) Waarom ik de term ALK minder of zelfs niet succesvol vind is dat klachten die na een normaal "succesvolle" behandeling aanhouden of waar je normaal verwacht dat deze binnen een bepaalde tijd over zouden moeten gaan, en nieuwe ziektebeelden die ontstaan waar we nog te weinig 2) over weten, worden samengevoegd.

Als iemand die na een infectie ME ontwikkeld heeft, zie ik dit niet als aanhoudende klachten, maar een nieuw ontwikkelde & onbehandelde ziekte. Toch worden de klachten vergelijkbaar "behandeld" & benaderd waar ik meen dat dit niet (altijd zo)